Lisa's pancreatitis journey

2007-09-08T23:07:00.000-04:00

I wanted to post on here that I have started a new blog it is at the addy below.

www.mylifeafterpancreatitis.blogspot.com

I really hope if you have found this site that you will come to the new one, there is more to my life now.

Lisa Atwell LPN

2007-03-07T17:41:00.000-05:00

March 7, 2007

It is with a heavy heart that I write this last blog message. I haven't done the best job with keeping up, but my heart was in the right place when I started this.
My physicial condition has changed so much that I have been doing what needed to be done and with spring coming I don't want to miss another minute of life.
I set out to bring information to others who suffer so desperately with pancreatitis either acute or chronic. I know that I can check this off my list one off with a goal met.
I dedicate this blog to all the men, women and children who have suffered with pancreatitis. To those who came before me and to those who will come long after me. Life doesn't have to be this way, step out and take a chance. I can tell you with utmost certainty that pancreatitis doesn't have anything to offer you but a life of misery. Check that diseased organ at the door in Minnesota and don't look back.
There is a mystery about change, the unseen has a way to beckon us to it, for those with pancreatitis the unseen is a better choice than the life we know.
Please don't let pancreatitis take one more day of your life, it is too precious and it shouldn't be wasted having that type of pain. Each day on earth is a gift, enjoy your present, it is your gift. Blessings to all who held my hand through 10 years of Chronic pancreatitis. You know who you are. A big heart felt "THANK YOU" to those who helped through the ordeal in Minnesota.
To Michael I wouldn't be alive today if not for you. You walked into a bad situation and never looked back. You are truly my knight in shining armour. Now to a life that we have waited for, it began a couple of months ago, I hope you are enjoying it as much as I am.

Lisa Atwell LPN

2007-02-07T16:47:00.000-05:00

2007-02-06T17:24:00.000-05:00

February 6, 2007

I find myself remembering what pancreatitis was like. All of those long very long years of sickness...... sickness that is now gone. How did this get here..... It is as though I woke up one day and the pain was gone.... THANK GOD the pain is gone..... The pain that I thought was my liver was actually my colon. I have discovered that I have to be very diligent about bowel habits or I get another ileus. I have not had ileus in over a week, I believe I had a chronic ileus there for a few months and I would be symptomatic at least weekly. Since my new discovery I have been able to decrease my oral pain medication intake, and there have been days that I have had to take no oral meds. I think I went 3 days and took 1.5 pills which is wonderful for me. I have always said " if it doesn't hurt then I am not taking anything for it."
This is the life that I dreamed of...... it is finally here. How I long for warm sunny skies to bask in. To be able to dig in the dirt and smell that sweet fragrance of spring. I can't wait.... some how we pick up where we left off at.... to bad I am not going on 31.... I got sick when I was 30..... who would dream that a person would have to wait 10 agonizing years to feel better...... I wasted alot of time on pancreatitis but the information that I needed just wasn't there. Who knows if I had went to MN back then they might not have known what to do for me..... I did have a surgeon at IU Med Center who wanted to do surgery on me... all he could say was how bad I would feel after.... and what a rough surgery it would be.... nothing postitive.... thanks but no thanks.... by the time I had gotten so sick I was ready he had retired and I had to wait... 3 years to find Dr. Sutherland.
Now plans for the future happen. Meetings are going to take place. Meeting people who have help my hand that went through surgery before me, friends that have been made through time and space... the internet.... educational goals are high on my priority list.... returning to work as a nurse someday.... that in it's self would dream of all dreams.... I remember going to sleep on
9-22-06 singing a song in my head....Jesus you are the savior of my soul...... and forever and ever I'll give my praises to you...... Jesus you are the.... you just never know where God will lead.... listen to that still calm voice....
Someday I will get my husband to take my picture to post on here. I am quite skinny now as I have lost an addtional 25 plus pounds since surgery. I have fought the good fight the weight will return in time.

2007-01-24T06:31:00.000-05:00

January 24, 2007

Hello fellow followers I wanted to send an update. Here in Indiana winter has finally hit and we had our first real snow on Sunday. Usually it snows by November. Boy, OH, boy am I glad it didn't snow this past Novemeber.
My life has changed so much since my surgery. I no longer wake everyday with sound of my own voice screaming. I do have pain, but it is controllable most of the time, there are rare occasions that I have pain and nothing seems to help but getting off my feet and laying down. All in all it is still a great improvement from what it was. I had my first hemoglobin A1C completed and it was 6.1 the .1 made it high, but the pcp was pleased. I don't understand people that don't want to do this diabetes thing the right way. The complications from diabetes are so preventable, with a little effort and I mean a little effort.
On January 18, 2007 I had to have an ultrasound done for my upper abdominal pain and elevated liver enzymes, as I was checking into radiology I remembered it was a year to the date of having my j-tube inserted. I was over whelmed at how much my life has changed. Don't get me wrong I am not doing cartwheels and there are days that I can barely make myself get up, but eventually I do and push forward. I haven't gained any weight back yet and it seems all the clothes for grown women are in bigger sizes. Funny when I was heavier it seemed they were all in smaller sizes .... guess what we can't win the age old battle women and clothing. I am slowly working on getting my house back in order or should I say in some order. I used to be a rather organized person and tidy at that, amazing how being sick will interfere with every aspect of our lives.
I wanted to ask everyone who has had a tp/ict to make sure they have some type of medical identification especially the diabetes part. I wear a medic alert bracelet but I found some really neat ones on line at a decent cost. These are a little fancier than what I got, but what I purchased was the basic of the basic and I will put the address on here also, I am pleased with what I have, although it would be nice to have a fancier one for special events.

www.custommedicalbracelets.com

Apothecary Products Inc.
11750 12th Avenue South
Burnsville, MN
55337
usually takes 3 weeks for delivery I spent about $13.00 for my bracelet with 2 lines of script
it is silvertone with a very heavy chain, I thought Michael
would never get the extra links to cut off.
Well I will close for now, until my next update.

2007-01-17T22:02:00.000-05:00

Jan 17,2007

I am sorry I haven't been able to up date the blog lately. I was doing quite well until last week. I was to have outpatient labs done for hemoglobin A1c to determine long term blood sugars and a c peptide all of this for my insulin pump ( that I am suppose to be getting). I was sitting at the desk of the outpatient registration lady when I felt as though I had gotten kicked in the chest. I had felt these little pains before, but this one lingered. I went to sit down as the lady said " we are done wait for them to call your name". I went to sit down and could hear myself moaning. I thought this sucks having to be NPO prior. I kept thinking once I get something to eat this will to away. In my mind I kept thinking " whimp not the same girl who could go days without eatting". I thought a few times call someone and have them take you home but knowing my husband had a funeral home visit in the evening and that would make him have to get someone to bring him to the hospital to get the vehicle I left I decided I would tough it out and go home. Once home I took off my clothes, ate and went to bed. I had so much to do prior that I had drawn up my insulin and had it in my glucometer and was going to give it after I ate. I put the heating pad up as high as it would go, as long as I didn't move it didn't hurt too bad. I was soo exhausted. The next day it didn't hurt if I didn't move, I knew something was wrong. I called and made a Drs. appointment. I saw my pcp who thought that I had just done too much. I really haven't done anything except maybe laundry and cook, do dishes. I haven't had the stamina to do anything real heavy or hard for that much. He wrote orders for labs and ultrasound. I had the labs done last Thursday and have to wait until tomorrow for the ultrasound. I recieved a call last Friday from the nurse, stating that my liver enzymes were high, specifically I think spgt. I didn't have anything to write on and frankly didn't feel like getting up to write it down. The exhaustion from elevated liver enzymes is awful. I have talked with a few people who have liver problems and one lady said " it sucks, when my enzymes are high, it is about all I can do to get out of bed" I soo believe her. When I first came home from MN and had my first pcp visit he ordered labs and my liver enzymes were elevated then. I wrote Dr. Sutherland and told him and he said they were elevated when I was released about 10 days prior to the first elevation. I know that the elevation had went down they were checked when I had my ileus, soo I don't have an answer. I haven't done much today, no energy. Well I just thought I would post. I wouldn't want my faithful followers to think that I am having fun. Althought I will say I have been sewing a little and am about to finish a nightgown for myself. I have been playing with my not so new embroidery machine that my dh got for me 2 Christmas' ago. I have to sew in the basement as my 2 young cats are into everything and I don't even want to think about them into my needles and sewing stuff. The basement is rather cold this time of year, so I sew when it is warm and the weather is yucky. In the spring and summer I hate being couped up in the dungeon of the basement. Someday I will have a room to sew in, thinking I will take over dd room when she moves out ( someday) I think she is here forever. No matter what the surgery was still worth it, no matter what when ever I do have a good day it is because I had my pancreas removed. With thumpy in I wouldn't be able to eat and would be miserable 24/7 so with that said the surgery was worth it.

2006-12-30T11:16:00.000-05:00

December 30,2006
Well faithful followers I am proud to announce to you that it is beginning to seem as though the surgery was " worth it". I know there were a few people who were beginning to wonder what was going on. There were a few who were watching my recovery to decide if they should have surgery. The past couple of weeks I have slowly started having more good than bad days. The bad days are bad but they are not followed by day after day of bad days. I am still recovering and have lost alot of weight (actually 50 lbs)in one year. My strength is increasing, I have even started to sew a little got a nightgown put together ( it only took me 2 months to get it done) who says I am not persistent?
I still have some pain, but it is relieved with medication which did not happen with pancreatitis. Food is good, I can't eat much at one time, but it is still wonderful. I can't believe that for 40 years I had a small bowel obstruction that was only getting worse. At the time of surgery it was a complete obstruction, I would have never been able to eat had that not been fixed. The diabetes is minimal. I use 7U of Lantus a day, and I am getting an insulin pump as soon as the manufacture can figure out what they are doing. I need very small amounts of insulin ( like the pancreas would give) the amount that I take works all day long, I could use about a half of a unit when I eat, but there are no syringes that measure that small of an amount, thus the pump. The pump makes is possible to give a small amount all day and then give extra small amounts. The thing about the diabetes is it is sooo controllable with a little effort. I don't care how much effort you give pancreatitis it is never controllable, never, ever. The tube feeding site is healed and gone expect for the scar.
Michael says he is happy with the surgery and he has no other thing he would like to say. He wanted me to tell everybody that it has been 98 days since I had a cigarette. I had 2 cigarettes the day of surgery, but after that I have not had a cigarette not even a puff. There are days that I would love to have a cigarette, but I know that diabetes and smoking don't mix. I will not loose my feet or legs because of smoking with diabetes. My husband is a surgical nurse and all of the amputations they do are because of diabetes and smoking, it will happen if I con't to smoke and that is not an option. I lost 10 years of my life to pancreatitis I will not loose my mobility again especially for something I can prevent. There were times when I was wheelchair bound. There were times I was soo sick I couldn't hold my head up. There were times I was so sick that I couldn't walk. I would fall flat on my face if I tried to stand up. I can't believe that pancreatitis is a thing of the past, I no longer have pancreatitis..... what more could a girl ask for at Christmas time.... so we begin a new year shortly..... what will 2007 hold..... I don't have an answer...... hope.... hope for a future I didn't think was there...... hope that I will be here in 5 years...... I don't have any answers I am as clueless as everyone else. Will I get back all that I have lost? I don't know. Will I go back to work as a nurse? I don't have an answer. All I know is I haven't done so many things in so long. I want to work in the yard, plant flowers, dig in the dirt. I want to decorate my house. Sew, and sew some more. Watch old movies and actually pay attention to the plot because it doesn't hurt so bad that I can't stand it. Read a book and actually be able to keep up with it. Time will tell all that I will do. Just waking up and not hearing my own voice scream is a good thing for me. Come on 2007 get here I want to put the last 10 years behind me I am ready to move forward....
The picture below was taken 12-28-06 I had went to the Dr.

2006-12-30T11:13:00.000-05:00

2006-12-18T17:56:00.000-05:00

December 18, 2006

Well here we are and Christmas is almost here. Almost a New Year very soon. I made it to church yesterday, the 3rd times since surgery. People see me at church and say "you look good" this statement always used to honk me off when I had pancreatitis. One person asked me yesterday if I felt better when I said " I still have alot of pain" they didn't want to hear it, they were making nice comments. In the grand scheme of things people really don't care how we feel, they don't know anything else to say to us so they think that because we have had surgery everything is fixed now and should (their impression) be better, these of course are the idiots that never understood pancreatitis to begin with. I have little patience with people these day, less than I had before. I guess I was living with the dream that things would be different than what they really are. My family members sometimes will say stupid stuff like "well at least you can eat now" no the truth is I don't have a funcitonal bowel obstruction any more so you feel better now that you think I can eat. You don't listen when I say it hurts so bad after I eat that I wish I hadn't ate, and that it would be alot easier if the j-tube were still there, so I could hook it up and not have to eat. People hear what they want and tune the rest out.There are some who believe that I need more time to heal. Personally I am at a loss, there is nothing I can do about any of it anyway, go with the flow is what I do. We don't purchase Christmas gifts at the Atwell's anymore. Once my husband and I started going to church about 4 years ago, we went to the mall to get my husband a pair of tennis shoes to wear to work and we saw people out shopping like zobbies, " must buy Christmas presence" the sound in their voice like Homer Simpson, must buy must get and we saw the insanity of the mass mechandisers, the time of year that every CEO plans for. Notice I wrote Christmas presence, they are attempting to buy something that can't be bought. I opted out of this craziness along time ago. For the past 2 Christmas' I haven't even put up a tree, some might say " why" part of the reason, I can't drag the thing up from the basement, and I plainly don't have the strength to put it up and take it back down. There isn't a soul here who cares anyway. I will get my daughter and her boyfriend a small gift, but the days of blow out Christmas' are over here. I would much rather get up on Christmas and watch good movies and be with my family than open gifts I don't want much less need, especially to fulfill a messed up idea of what Christmas should be.
To close for this post, from our house to yours May you all have a VERY MERRY CHRISTMAS, AND A VERY UNPAINFUL NEW YEAR.

2006-12-05T16:07:00.000-05:00

12-5-06

I have recieved some e-mails questioning how I am doing. I have not posted lately as I haven't been feeling well and it takes all I have to get done what little bit I can do. I was taken off the Duragesic patch on 11-20-06 and did well with little to no withdrawl symptoms. After about 2 weeks I started having that all to familar pain again, it is very distressing to think that I had this big huge surgery and it still hurts. What I have to remind myself is that I was once taking Actiq 800 mcgs 6 times a day in addition to valium and xanax through out the day. Those medications are gone and hopefully they won't be needed again. I think the idea of getting a patient off all their pre surgery meds is the goal, although it should be done appropriately. I want to be 100% who doesn't, I haven't been 100% in over 10 years now, why should I think it would happen in less than 90 days. I have always had high expectations of myself, I want a life so badly that I can't wait for it to get here. I should be glad that I am not tube feeding anymore, I should be glad that I made it home safely. I am human and I want more than what I am at this point. I want to paint rooms and decorate my house, all of the things that other people do and have the ability to do. I am lucky if I can take a shower and cook supper , someone else will have to do the dishes. I am trying to be truthful here. I have people call me on the phone and say " well are you better now" I want so desperately to say to these people " I don't know lay around for 10 years of your life and barely exist only to make it to Drs. appointments. Then spend years trying to find someone to help you, endure every barbic treatment known to mankind. Have a 14-16 hour surgery where your entire bowel is removed from your abdomen and placed to the side, pancreas removed, ground up and islets reinfused into a huge vessel and sucked into an organ that was never intended to the job that you are now expecting it to do, remove my duodeum and spleen, recieve 3 units of someone else blood, wake up feeling for months like you got into a fight with a tractor trailor truck and it won, how do you thing you would feel" I have put the pictures on here spared no shameful information how would you guys feel about such idiots? I have even had people call and say " we are coming over right now" my reply is " I don't think so" I guess people don't stop and think. When I say I don't feel good, I here that sound on the other end of the phone, not by those who really know me, those who really know me , know what the past 10 plus years have been like. Those who truely know what the past has been like tell me " it has been over 10 years what do you expect" " you are less than 3 months post op, big surgeries take a year to get over" My new years resolution is going to be " to be a little kinder to myself and not expect so much" I can't help it, I never planned this to happen, I would have planned something alot less painful, had this been my decision. I am not trying to depress those who are still sick, I just want them keep a realistic idea of what is truely going to happen. This is a chronicle of my life with pancreatitis. I did this because there is such little information about pancreatitis. Most of the information available is frankly just wrong. By telling everything that I go through it will give a more realistic impression of how this disease process effects one life. Not some book that gives just the medical facts, there is a human side to pancreatitis, and every sufferer knows that, it is the medical community that has little information about what we really need, or how to help us. There are Drs. who are willing and without them we would truely be in trouble, there is no way we can face the daily pain without a physician who believes in us as an individual. I will try to keep the blog updated at least weekly. I will have no shame in telling you if I am having lots of fun, that is why I went through this surgery. If I haven't posted, I seriously doubt that it will be because I am having soo much fun, one can just about conclude that it is because I am too ill to keep up with my obligations if the blog isn't being updated. My husband is bogged down with work and BSN school he doesn't have time to keep it updated, he barely had time to get me to MN. He had to leave to go back to school and be home to make the necessary arrangements for me. I guess I am grouchy, days of pain will do that to a person. I have made up my mind I am not suffering for anyone. I want this surgery to be a success more than anyone else, but I think we need to have a reasonable time frame and some things are happening too quick.

2006-12-01T20:08:00.000-05:00

12-01-06
If you have been reading then you have found out that purple is my favorite color, once I found the purple for the font I am hooked.
I had my intrathecal pump filled last week and the pain management Dr. wanted to decrease it by 10% which I thought was crazy since I was still wearing the Duragesic patch that MN had prescribed. My opinion was to stop the patch and then we would start decreasing the intrathecal pump. I still have alot of pain, and we will decrease the pump as I am able to tolerate. I did write Dr. Sutherland an email this week and he said that he would think that my islets are functioning at max capacity now. Amazing, my blood sugars are good, I get low to frequently, that is probably because my islets are working. My pcp mentioned an insulin pump, but currently I am still trying to find the "right" dose of insulin. I will continue to try. I am getting a little response to the blog, I hate that someone else has to be sick to respond to the blog, but that is life.

2006-11-22T17:10:00.000-05:00

November 22, 2006

Well it has been exactly 2 months ago that I had surgery. I was hospitalized from the 9th to the 11th with an ileus. This is a complication from the surgery. Anytime a person has a huge abdominal surgery this is a complication that can occur, I have been warned that once this occurs it could occur again within the next year.
The pain that I once had from pancreatitis is now gone. I do occasionally have some pain in my back near my scapula, but it is nothing like what it was before. It does take time to recover from this surgery, my analogy is this " you feel like you have been hit by a truck".
The diabetes is a little bit of a problem, high and then low, that seems to be the pattern for those of us that have had tp/ict. My pcp has suggested I use an insulin pump and my husband picked up the paperwork yesterday. I spoke with a man who just started using one about 30 days ago, he didn't want it at first but now he has such great control he wouldn't go back to giving injections all the time.
There doesn't seem to be anyone posting on this blog and no one has written me. I don't regret having done the blog, if it leads one person to Dr. Sutherland or tells one person that they don't have to live with chronic pancreatitis then it will have all been worth it. For those who are still sick because of pancreatitis, you don't have to live like this. Step out in faith that things can be better than they are, take the plunge, just have the surgery you will begin to feel better. Without the surgery you are never going to get better. Last year at this time, I had just been released from IU Med Center. They didn't have anything to offer me as treatments, and I decided that what could be done near here was not what I wanted. Hang tuff all of you with pancreatitis, you life can be different.

2006-10-28T12:38:00.000-04:00

Hi all I found this picture on my husbands laptop. I remember him taking these pictures, I forbid him to post it until after I came home I knew my daughter or my mother had not seen this and if they happened on to it they would be upset. I told my husband that people would see this and say " Does this woman have any shame"? I put these most embrassing pictures on here, not for people to say " my what a big belly" or " gee she sure has alot of strech marks" but for those who have not had the surgery and wonder what the post op incision looks like, so here it is, 2 days post op, and for those who are so analytical there are 38 staples on the wound. The staples were removed prior to my discharge and steri- strips were applied and lasted about 10 days before they feel off. I wanted to post that in the past 3-4 days I have been having some very familiar pains, they feel somewhat like pancreas pains. I have had to increase my oral pain meds again, and will speak with my pcp on Monday, I have an appointment on Tues. for my pump to be decreased again and I think I will cancel that appointment and let them take it down again when I go for my refill. I will try again, but I wanted to post that I am having some pain orgin unknown.

2006-10-17T18:49:00.000-04:00

10-17-06

I went to the pain management Dr. today and my intrathecal pump was decreased by 10%. My surgery has been less than 4 weeks and I am now already decreasing the amount of baseline pain medication. Everyone there was pleased with my progress. I also took all of my old medications and had them count and waste them. There were people in my family who said " why did you do that". My rationale is that I have no pancreas pain now, if I should develope pain that necessitates an Actiq then I need to be seen by a physician right away, something is terribly wrong. I have went weeks now with no pancreatic pain, I don't think now that I am eatting that it is going to return out of the blue. I still have some post- op pain and that is a deep pain, so much different from the pancreatic pain.
My BS dropped on me today, but it was my fault, the pain management Dr. is about 90 miles round trip and I didn't eat lunch. We were in a hurry and the office had moved we had to find it. Once in there I had to meet with the NP's and then talk with the nurse who fills my pump by the time we got out to the front desk I felt shaky, and I knew I needed to check it. It was 67 I felt shaky and nauseous, I used a glucose chew my husband was in the process of driving to Boston Market. I ate most of my food, especially the carbs. I checked when we got home it was 126. I am usually in the 120's after the 2 hour mark, I am so sensitive to the Novolog that I have only adminstered it twice and both times were in the hosptial. Every time I had it, there was a hypoglycemic incident. It is not unusual for the BS to be 149 2 hours after a meal and then 40 minutes later be 107. My weekly average is 117 for the past 7 days. Dr. Sutherland said " 120 fasting and 140 post pranial ( or after eatting)." The site of my j-tube has almost healed it is very small, about 1/4 inch in depth. All in all this surgery has been extremely succesful for me. Anyone who like to get into contact with Dr. Sutherland may call 612-625-7600 this is the office number.

Lisa

2006-10-13T22:49:00.000-04:00

Friday 10-13-06

I saw my pcp today. I recieved the injections that Minnesota forgot to give me. If you have a tp/ict you should have the pneumonia shot and menigitis shot and a flu shot every year. In addition to the injections I also had some lab work done to check liver function, the results will be back next week. I told my husband this year when the flu hits I will wear a mask in public, I am not about to get sick. I have had all of the feeling bad I want.
I have made another friend in this battle against pancreatitis. I met a mother recently of a 4 year old girl with pancreatitis. I gave her Dr. Sutherlands e-mail address and told her " if he can't help you he will tell you who can". It breaks my heart to think of a little kid suffering; especially this way. She is determined not to let this take her baby from her, which is a good start. I have encouraged her to join some boards to learn about the surgery and to speak with others.
This experience with pancreatitis was bad and painful, but I have met some fine people because of it. It is what we learn through the trying events of life that make us or break us. It is how we share the gifts we are given.
There are still many waiting for their surgery, I will be able to relax more when I know all of my friends have had their surgeries and they are all better. The way it should be....

Lisa

2006-10-10T15:53:00.000-04:00

October 10,2006
Seems that some of my fan club are wanting more information about how I am doing. First thanks Guys, without loyal readers there wouldn't be a need. I don't want to give the wrong impression that I am out running around, or eatting bowls full of food. This is the recoup phase, and boy do I need it. I don't know if I am getting old or if it was because I was so sick when this surgery was done, but I sure feel like I have been hit by a truck. I have been on alot of pain medicines over the years and Dr. Sutherland told me that would be the worse part getting off the narcotics, he said "you maybe one who can't, although you seem determined to me, even if you can't you really did have a problem, so it shouldn't be such a big deal". I just feel weak, I did loose 2L of blood and did have 3 blood transfusions ( 2 in surgery and 1 on the floor). Here is a picture of me when Michael picked me up at the airport. I still don't know how I did all of that, I guess you do what you have to do. It was about 1am last Wed. morning 10-4-06 when my flight came in.
I have been thinking about what I could do that would make it easier for those who follow in my foot steps. There were alot of things that I wasn't prepared for and things that I was too prepared for. When packing for this surgery, don't do like I did and take a bunch of stuff, you will be responsible for getting it back and believe me you will not feel like carrying all of the stuff you will have. I was told I might have physical therapy so I took clothes for rolling in the floor and never wore them one time, it was just stuff to lug from the hospital to the hotel and then to the airport. Don't take more than 2-3 outfits plus the one you are wearing. Don't worry about tons of underwear you won't be wearing them, I tried with the staples and it just rubbed them don't waste your space, take about 5 pair plus the ones your wearing. Do take a tooth brush one will NOT be offered to you, plus your favorite tooth paste. Do take a hair brush. Don't worry about a nice pair of pjs or gown you will be in a hospital gown your whole stay, I had the PICC line up until discharge and the way they put my in no arm opening was big enough except those big huge hospital gowns take at the most 2 pairs of something to sleep in. One thing I really like is clean socks, you will be up moving after day 2 take as many as you think you will need, the moving is not a constant you just get up and walk when you want to (no one ever told me hey get up and walk, I just asked if I could and once they saw I was steady on my own two feet they let me at it) I tried to walk at least 2-3 times/day around the unit and then of course I left the unit some for trips to the pharmacy. Let me touch base on this subject: if you get sent to pharmacy for YOUR OWN glucometer make sure that pharamcy gives you everything you will need or you will make unnecessary trips that you don't have the energy for this is what you need from them 1. glucometer 2. strips 3. lancets 4. control solution ( this will make more sense with teaching) make yourself a check sheet and put it in your bag and take it with you when you go that way you don't have to walk down there like I did multiple times, you will get NO sympathy from the nurses they will tell you to do it, go get it yourself. I think it is there way of making us responsible for our diabetes education. They don't understand how bad we hurt, that is one thing that I got right off the bat, rememeber no one understood pancreatitis either that is just the way it is.
Don't bother bringing things like make-up ( you won't feel like applying it) rollers ( no I didn't go that far) don't bother with things like books you can't give them your full attention, your attention is drawn up with all the information being thrown at you and resting. The biggest thing I can say is rest up, you will get NO REST in the hospital, just as soon as you think you are comfortable and a sleep they will wake you up for your hourly BS test. Don't take large sums of money with you for safety they will have you lock up ALL valueables don't take rings or jelwery with you ( they will take it off of you) everything will go into the safe, and make sure the bag has your name on it not someone elses like mine. You will need picture ID, I suggest 1 credit card, 1-2 blank checks ( just encase)and your insurance cards anything else leave it at home unless it is something necessary I have to carry a card on me that says I have an implanted device without this card I cannot board an airplane because I make the metal detectors go off and of course they search me they have even put their hands up my shirt before, once they feel the pump under my skin and see the card they are ok with it. Another thing that might make things a little easier that I did was I asked my primary care Dr. for my insulin syringes before hand because the pharmacy in MN tried to give me a case of these it is a huge box that I didn't have room for I got these before I went and took about 10 syringes with me and cut the Rx off the box to cover us if we got pulled over. They will load you down with medications so much that I didn't have room for them, becareful I had to throw out things and download some of my stuff I just had to choose between what was the easiest to replace and such. If you have questions feel free to e-mail me at LRSmith84@yahoo.com this blog is dedicated to those people with pancreatitis the men and women who came before me and the ones who will come after me, life doesn't have to be the way that it is, step out of your comfort zone take the risk that things will get better, life with pancreatitis is not something that I would wish on anyone, take heart there is hope, hope that I didn't think existed for a long time. The road is long and hard, but doable. Your life is never going to get better with this disease. I would have rather died trying than died of pancreatitis. Thanks again to the dedicated readers of this blog, if we can reach one person then our efforts and time will have been worth it.

Lisa

2006-10-07T11:13:00.000-04:00

It is Saturday morning and it is a good day. Lisa got up this morning and checked her blood sugar (94). She had been on 10 units of Lantis and cut it down to 8 and today she says she will cut it down to 7. Dr. Sutherland told her that maybe when she sees her primary care physician next week, maybe she will not need the Lantis at all. That would be nice, but if she does that is ok, too. Yesterday one of the sweetest people we have ever met, Beverly Baker, a friend from church, came over to our house and cleaned. She is a professional cleaning lady and has a business. I have never seen anyone clean that thoroughly. The house looks great. I told Bev that we have to live in one room of the house, because we will be afraid to mess it up. She was such a blessing from God. Lisa said that Bev was a very brave woman, because with a man and his 22 year old daughter living in a house living no telling what condition it would be in. We did a pretty good job, though. We (read: I) never let the dishes pile up or the laundry pile up (for a man, that is saying something). I know the blog is getting boring, but that is a testament to God’s mercy. She is not in the hospital or having a terrible time with her blood sugars. I work in surgery and believe me a long boring surgery is much better than in a long scary one. Take care.

2006-10-05T20:27:00.000-04:00

Post Op Day One

This is the picture of Lisa that she did not want me to post until after she was back and doing well. She didn’t want her daughter or her mother to see it and freak out. She was sedated and resting. The emesis basin was there from the night before.

She is doing well. When I got to Dayton International Airport to pick Lisa up, I saw that her flight was delayed. It was suppose to arrive at 10:55 pm and it was an hour late. It was storming real badly, so I wasn’t surprised. I was so glad to see her. I thought that the airport personnel were going to be pushing her in the wheelchair, but she came walking. She had a big grin on her beautiful face when she saw me. I asked her why she wasn’t sitting in a wheelchair being pushed by an airport employee. She said she just started walking, because she didn’t want to wait. That’s my Lisa (LOL). I had a wheelchair for her so sat while we waited for the luggage to arrive on the conveyer belt. On the way home it poured down rain harder than I think I ever remember. I had to come to a stop at one point at the side of the highway. There were semi-trucks pulled off everywhere. Not even pouring rain could keep Lisa from home. She was surprised to see that I had bought Hello Kitty Sheets and pillows for her first night back home. She just kept smiling. She said I would not believe how good it felt to be back in her own bed. She sent me out to the MCL Cafeteria to get her some baked cod and Harvard beets. I know the beets are probably pure sugar, but she said they were wonderful. She ate about ¼ of the serving. I am being the domesticated man around the house, and I am making her let me do the things that need done.

2006-10-05T11:17:00.000-04:00

Good morning Richmond, In.
Thank YOU JESUS for getting me home in one piece. I may have lost a few pieces along the way, but I think they were garbage organs anyway. I am finally HOME. It is more wonderful than I could have ever imagined.
I am very tired, and worn for the wear. Those of us who have had pancreatitis, must be a special breed ( not patting my own back here, seriously) I don't know how we do it, I guess it is because we have too, I would not have wished the last 10 years on Satan himself, but that is all done and over with now. The surgery is a bigger deal than I ever dreamed, I am so very weak, and tired. But, the pain that I once had is gone. I still have some back pain, and I think it is post-op related. I don't know if I felt the bowel obstruction or the pancreatitis the most before, either way it hurt terribly bad and that is gone now. Now I just have to get my strength built back up. I am having a little difficulty eatting, I think it was because it had been so long since I had eatten any real quantity of food. It is however increasing amounts each day which is good. I didn't get where I couldn't eat over night and won't get where I can eat plates full of food over night either. I will take it slow. My blood sugars are doing well, and have only had to do the coverage insulin 2 while hosptialized. Each time that was only 1 unit of Novalog. I have actually lowered the amount of insulin they had me taking, it was to be 10 U of Lantus and my sugar was 68 at 3am in the hotel, so I drank half a cup of sprite and that brought it right up, seems I go low at night while I am sleeping and that scares me some, I am glad to be home with my family that way they can tell if something is wrong. Dr. Sutherland wants me to see my pcp next week, I am keeping a log of my bs and according to him, I may even have the Lantus discontinued next week, I sure hope so.
I just wanted to let everyone know I am home. Thanks to my frequent visitors and personal "pep team and cheerleading squad." You all know who you are. Thanks to my husband for being the best coach a girl could have. I love hello kitty and came home to a bed made with hello kitty sheets, and a new hello kitty pillow. What a guy... I don't know where I would be without him, my Knight in Shining Armor. There will be much more to tell later, I just want to rest and bask in the relaxation of "HOME".

Thumpy your dead and gone, you won't get my condolensences. Back to the dirt you came from, where you belong.

Lisa

2006-10-03T16:42:00.000-04:00

Lisa made it to the Radisson. She was happy to be out of the hospital and is very much looking forward to coming home. She had the bellhop run across the street to get her an apple juice. She is ordering a macaroni and cheese from Applebee’s kid’s menu and will probably have that for lunch and dinner. She can always order more if she wants some later. She says she does not have adequate pain control, but it isn’t so bad if she can just sit down and not move. She was just done arguing with them, and wanted out of there. Dr. Sutherland said he wants to see her again in 3 months and she will decide at that time if she wants to go. Right now, she just wants to be home and the thought of going back to Minnesota is unappealing. She may have a different opinion in 3 months….when it is cold. Ouch. We hate snow, but of course it snows in Indiana too, so that excuse is null and void. Thank you for the cards and E-cards and letters she has received. They came at times when she needed the most encouragement. It meant a lot to her.

2006-10-03T11:55:00.000-04:00

Lisa is feeling better about her release that will happen today. She was able to eat something (meat lover's pizza from Pizza Hutt...not). Her blood sugars have been a little more regulated today. She will go to the Radisson today and Will fly home tomorrow. She said there is just no way to prepare for this surgery, because you don't truly know what to expect until you are in the middle of it. She said it is like getting hit by a truck. She knows that people don't have this surgery unless they need it, and that she knew she had to have this surgery. She says she would have been dead in a year at the rate things were going for her and I do not doubt it. It was taking more pain meds to keep her somewhat comfortable. Those of you who suffer from this disease know the looks you get when you have to ask for more pain meds from your doctors and how you feel like you are crawling on your belly to get them. You are also afraid that maybe this will be the time your doctor will say, "No." You always worry about running out and whether or not your doctor is on vacation, and have trouble getting meds from one of the partners. We have been through the whole gambit, and I know you have too. Pharmacy techs and pharmacists giving you the evil eye. I was once accused of selling them by a pharmacists and then when I asked the tech for his name so I could file a complaint with administration, she would not tell me his name. She was trying to protect her own skin, but I had a right to know. Anyway....

She told me today when she ate, it was like she had a fire in her gut and that she could breathe fire. She is not sure whether she took too many digestive enzymes or not enough or what, but it is a learning curve. She had to go back to pharmacy to get the control solution for the glucometer because they didn't include it in the kit. It was $100, what a racket. She will be home soon. I miss her terribly. We talk on the phone often, so that is good.

2006-10-02T11:06:00.000-04:00

The doctor was talking about releasing her today, but she does not think she is ready. Her blood sugars kept dropping the whole night and they had to give her glucogon many times through the night. She is worried that because she is not eating anything, she will not get enough to sustain herself. She tried drinking juice through the night, but it wasn't enough to keep her blood sugar up to a managable level. She convinced Dr. Sutherland to keep her one more night, but she could tell he didn't like it.

2006-10-01T21:35:00.000-04:00

Hello everyone. Lisa wanted everyone to know that she will be released to a hotel tomorrow sometime. She is still unable to eat much of anything and to drink something is a real chore, but they feel she is ready to be discharged. She will be staying at the Radisson for a couple of days and then fly home Wednesday evening. I will pick her up at the airport.

She had to go the the pharmacy to get her glucometer for her diabetic teaching tomorrow. When she got down there to the pharmacy she discovered that they needed to see her ID and insurance card. Because she had been concerned that someone would steal the wallet out of her purse with her money, she had had the security guard lock it up in the safe. Before he took it, he had her fill out a paper that listed everything that was in it and fill our her name and information. When she called to have them get her stuff for her it took six hours for them to return with it. They had put someone else's name on her wallet. Can you believe that? They had to verify that it was hers, probably by the driver's license..... Brainiacs. When she got back to the pharmacy, she gave them her insurance card and they would not accept it. Lisa told the woman that she had a contract with our insurance company and it didn't matter. Lisa had to sign a paper saying that she would repay the hospital for it and it came to $300. When she got to her room, she discovered there were no test strips in the box and she will have to buy them separately. What a joke. She thinks that Dr. Sutherland and his team was great, the nursing staff needs improvement and they system needs an overhaul. I could lie to you, folks, but that would be doing you a disservice. Shortly she will be out of there and home, and the real recouperation will begin.

God is always faithful, and through this He has shown us his mercy and grace. He is sustaining us without fail.

2006-09-30T13:43:00.000-04:00

This morning for breakfast they brought for Lisa cream of wheat, two pancakes with syrup, coffee, milk, juice, and of course Bacon. She just looked at the tray with disgust. Then the resident came in and Lisa lifted the lid to show her. She said, "Is this what you want me to eat?" She said, "Oh heavens no." Lisa told her the problem she was having with the whole "I don't eat pork products" thing and she changed the diet order. The doctor was also upset that no one had given her any digestive enzymes. I am not sure how they thought she was going to digest any of it without supplements. She started talking about her diebetic teaching class she had had, and she was floored when Lisa told her she had not been through the class yet. Lisa is a little mad right now, and I don't blame her. The doctor before the surgery told her she would have to eat six small meals a day and they keep bringing her three meals she cannot eat, and give her the insulin. Amazing.

2006-09-29T22:46:00.000-04:00

Lisa said yesterday they were going to advance her diet to liquid, but not clear liquid. For lunch today they brought her a tray with turkey, mashed potatos, carrots, milk, coffee, and a piece of cake. The cake, incidently, was one of the kinds of things the dietician had told her to stay away from. She told the nurse that she couldn't eat this stuff, and asked her to try. She took four hours to drink the milk, the coffee was terrible. I hated the coffee at the hospital. The only decent cup I had was the Folger's we brought with us and prepared at the hotel. For dinner this evening, they brought her a piece of pork with mashed potatos on the side. She told them right up front that we follow a Jewish diet. She told me she made it perfectly clear right up front and they brought her pork. She had the volunteer remove it. She asked the nurses if any mail had come for her and said that nothing had come. She knew that her mother had sent her a card, but she had never received it. When she was our walking by the nurse's station, she saw an overflowing stack of mail in the inbox and asked if she could look through it to see if any of it was for her. There were several that were for her, and had probably been there for a few days. There was mail for lots of patients that was just sitting there overflowing the in box. Disgraceful.

Lisa' new roommate has a mother that will not stop talking and will not leave, and her roommate snores terribly. Lisa is not able to get much sleep at all. She said this lady snores worse than I do, which to hear Lisa talk is saying something. The nurses gave her ear plugs, so hopefully that will help. They removed her PCA and have her on oral pain meds and a duragesic patch. They are still checking her blood sugar quite regularly. She should be used to it by now.

2006-09-28T15:38:00.000-04:00

Lisa said they pulled her NG tube. She is going to concentrate on walking more. GO LISA!!

2006-09-27T23:36:00.000-04:00

Here is a picture of our male cat. Our daughter, Ashley, put eye makeup on him. I laughed so hard, I about cried. Poor cat (LOL).

I spoke with Lisa this Wednesday evening. She said they are going to pull her nasogastric tube tomorrow. I am sure she will be glad to have that one out. She was saying that she sure was glad she had it in, which surprized me. She threw up once today. She said she was a little sick to her stomach, and she said it hurt like heck. It was bile. She is getting up to the bathroom by herself, but it is a process that takes a lot of energy. She always complains that I try to converse with her as if she is feeling 100%, and she reminds me that she is not yet there.

Because very few people leave comments on her blog, she doesn't really know how many people are following her progress. She says she hopes it helps, and that if it helps one person, than it was worth it.

2006-09-26T20:14:00.000-04:00

I (Michael) made it home safe. I left Minneapolis at 4:50am (CST) and arrived at home in Indiana at 0730 (EST). It was a long drive, but God granted me travel safety. I am rather tired though. I know that others have traveled farther (Florida and California).

Lisa is doing great. I just got off the phone with her. Dr. Barnett told us yesterday that he was going to have the intrajugular IV discontinued today and a PICC line place. They took her to radiology to put the PICC line in her arm and while she was down there, her PCA pain medicine malfunctioned and she went an hour without receiving any pain medication. She was a hurt pup when they finally got her back up stairs. The two radiology techs paged a transporter to take her back up to her room, but when a long time had gone by and they still hadn't arrived, Lisa finally said, "Why doesn't one of you take me back, you are not doing anything but sitting there, anyway." One of them finally did. That's my Lisa, take the bull by the horns. She is walking more and getting stronger. We are hoping for a continued improvement. I figure if she has to stay the whole two weeks, she will be doing patient care on the other patients...Once a nurse, always a nurse.

2006-09-25T22:44:00.000-04:00

Sorry I have not posted much today. I was unable to get back on-line at the hospital after I posted that last one, so I had to wait until I got back to the hotel. When I came back in the early evening, I was unable to connect there in my room. The Radisson hotel has the worst wireless connectivity I have ever seen at a hotel. The signal always bounced back and forth between low and very low...anyway.

Lisa is doing well. Even better than we had expected. Her insulin levels on are running at 1 unit per hour. and her blood sugars have stayed between 88 and 120. When it gets above 110, they adjust it a little. She has TPN going with lipids. Dilaudid PCA, EKG, Pulse Ox, foley catheter, intrajugular venous access, which they will discontinue tomorrow and put in a peripheral IV, She should be adequately hydrated by now, so they shouldn't have too much trouble finding a vein. She is passing some gas now and has some bowel sounds on the right...just what she wanted the world to know LOL. The lady in the same room with her is being discharged tomorrow. She had a total pancreatectomy also and she is on going home on postop day 11. Good for her.

Thank you so much for your prayers. They are being answered. She walks to the bathroom almost without assistence (still holds on to the IV pole and has the nurse right there). She has been using her incentive spirometer frequently and talks about wanted to get better and take her life back. Before I left the hospital room she was getting the gauge on the spirometer up to 1250, and she on postop day 3. This morning she was getting it up to 500, just to show you the improvement. She still needs rest and she is very sore, but she is improving by the hour.

I am packing the van tonight, because I am going to leave first thing in the morning, and I don't want to get bogged down at 4am. I am hoping to be on the road before 4:30, so I can reach home while the sun is still shining. That way I will do my night driving while I am the most alert. That is my plan anyway.

Lisa wanted me to thank everyone for the e-cards that have been delivered. Your words of encouragement mean a great deal to her. Unfortunately they volunteers do not deliver them on the weekend and she received them in one stuffed envelope Monday afternoon. Keep them coming for her. She was grateful. Although I will be home tomorrow evening, I will continue to post her progress. Thank you for reading this blog. I have enjoyed keeping our friends and familiy and coworkers informed. She hopes that maybe someone will benefit from her story. Goodnight, friends.

2006-09-25T12:08:00.000-04:00

This is Emily. She is an RN taking care of Lisa. As I am typing this Lisa just walked about 30 feet from the bed to the hall, just a little in the hall and to the bathroom.

2006-09-24T23:56:00.000-04:00

She doing well. She was up in the chair for an hour and a half. She is using her incentive spirometer. When I was sitting beside her bed speaking with her (she was in bed) I noticed that the tape on her NG that should have been attached to her nose was about four inches from her nose. She pushed the call button and the RN (Megean) came in and pushed it back in and taped it to her nose again. Lisa sure was glad I noticed that one, because the thought of having them put one in while she was awake did not seem appealing to her. I left her room about 8PM and she said that before the evening was over, their goal was for her to walk to the door (about 20 feet away) and back to her bed. It may sound easy for us, not for her right now...

2006-09-24T15:32:00.000-04:00

I went to see her this morning about 10am. I woke up later than I wanted to, and I was planning on going to church, which started at 10:30. I had to leave after a few minutes. There is a nurse named Tom who is taking care of her today. He didn’t seem too keen on having his picture taken so I didn’t take one. She was hurting, but more awake. I smooched her head and went to church.

I got in the van and punched the address into the navigation system, and I think it was having trouble with my starting position, because it gave me the directions, but wouldn’t give me voice prompting for right or left. Finally it got its stuff together and guided me. It was running a little behind on the turns and I missed a few. It recalculates if you miss one, so it was not a big deal. When I got back I went up to see her again.

She looked much better. She was awake and carrying on conversations. She looked more like her old self. She has an incentive spirometer that she uses every hour for 10 breaths to prevent pneumonia. It helps her get air down into the deep parts of her lungs. When Tom told her that he was going to get her up in the chair today, she said, “Ok, I will do what ever you tell me to do.” Her roommate is a small lady who apparently had a total pancreatectomy a couple of weeks earlier without the islet cell transplant. Apparently her insurance company didn’t want to pay for that….that just sounds so familiar for some reason, but I cannot quite put my finger on it…. Her roommate is up walking around and leaves the room. They have been bringing this lady food trays and everything. I made sure Lisa knew that this lady was very functional.

2006-09-24T00:28:00.000-04:00

Not much to report. She is doing ok. She is missed very much by me, and although I am sitting a hotel room, my heart is a couple of blocks away. I only saw her three times today, for probably less than 10 minutes. I know that might seem a bit dramatic, but she is my baby. I will be so glad when she gets to feeling better. Today I was thinking about her and I remembered when she spoke with the human resource lady and got the approval this last time. She was so happy, and she was jumping up and down (relatively speaking) and crying. Then I pictured her today in the hospital and was struck by the contrast between the two extremes. I know that this pain she is having now is only temporary.

A Letter to Thump (the pancreas):
You have tormented my wife for the last time. I have many memories of the hell you put my wife through. You tried to control how my wife would live, and you tried to steal her joy, but you failed. Her joy comes from her savior, not from a state free from pain. The Apostle Paul had an affliction, but his joy was in Christ Jesus. Somewhere right now, you are a vapor in the wind, void of power and control. No matter what pain Lisa would have from Friday forward will not be pancreatitis. We have fought this fight for many years and the battle is over. You lose.

2006-09-23T12:20:00.000-04:00

University of Minnesota Medical Center. The surgical waiting room is the long set of windows under the car port.

Two of the nurses taking care of Lisa. Shelley on the left and Gwen on the right.

I went in to see Lisa this morning. She is a lot of pain and is swollen, which are to be expected. She is on 6B room 6232 bed 2. She has the window seat. Dr. Carlson said he wants to have her up and walking by this afternoon. I asked him if that was realistic and he said, "Oh, yeah." I told the nurses and they said if she will be able to sit on the side of the bed and dangle her feet, she will be doing good. She is in a lot of pain, which is understandable. I will not post pictures of her in her hospital bed without her permission. She has that right. Thank you, everyone, for your prays. They are being felt.

I noticed last night when I put the chain on the door in the hotel that the piece that the chain goes into was reversed, so that when I applied the door chain and opened the door, the chain would just fall open. I told the front desk and they sent a maintenance guy up to fix it. He was flabbergasted that it had never been noticed or perhaps reported before.

2006-09-22T20:44:00.000-04:00

Dr. Sean Barnett just came out and spoke with me. He said she is doing great. As far as islet yield they got 370,000 (I think). She may require a little Lantis in the morning once all her islet cells take hold. She is going to be on 6B, but at this moment I don't know exactly where. He said she will feel ok tomorrow (relatively speaking) because of the honeymoon effect, but that Sunday will be her worst day. She has an NG tube and he said once she begins eating, she should have no associated pain with food consumption. Praise God. Dr. Barnett said that they made the incision about 9:20 am and that the actual surgery went pretty quick, but it takes about five hours from the time they take the pancreas for them to return with the islet cells. They said her spleen looked ok, but that had to take it because the blood supply would be compromised, because she had small secondary arteries, and it was best to just take the spleen so it doesn't cause her trouble in the future. She had 7500 cc's of fluid and 2 units of blood. It is going to be a hard road of recovery, but it is all downhill from here. Once she gets up to her room, I will go get something to eat, go back to the hotel and then get some sleep. I am stiff from sitting in this waiting room. I saw lots of people come and lots of people go, and still I sit here. I think if I don't leave soon I will be considered furniture.

2006-09-22T15:37:00.000-04:00

Here I am in the waiting room. If I am boring you with the details, I can take it.

2006-09-22T15:06:00.000-04:00

The chaplin Becky Swanson just came to visit and say hello. She apologized for not being able to see her preoperative. We prayed and she told me where the chapel is (7th floor).

Dr. Sutherland just came to talk to me. He is very nice. He said they are waiting for the islet cell yield. He said as far as pancreases go on a scale of one to ten with ten being the worst, hers was a four as far as condition goes...which was good news, because less scarring could mean a higher yield. He said that condition of the pancreas does not necessarily corelate with the amount of pain one is having. I guess it all depends on the proximity of the damage to the nerve system.

He took her spleen, and the anastimosis is completed. He suggested we not put in a J tube to replace the one she had, because the plumming hook up is complete, and she will have a naso-gastric tube. She won't like the NG tube, but Dr. Sutherland said that she will have it for about 5 days and then pulled, as opposed to a J tube which will require another surgery to discontinue. She will be on TPN for a couple of weeks he says. She hated her J tube anyway, and was always worred that it was sticking out from under her blouse. One of her goals is to eat again, so maybe if she concentrates on that for the next week while she has the NG tube it might soften the blow, because she hates NG tubes. He asked me what I thought, and I told him that I would trust his judgement. He said they would know more about the islet yield in a couple of hours.

2006-09-22T14:34:00.000-04:00

Thumpy came out at 11:51 I am waiting for an update from Dr. Sutherland.

2006-09-22T11:14:00.000-04:00

Lisa in the preoperative holding area

Dr. Nancy Thorvalson, Anesthesiologist

Lisa getting a nebulizor treatment

Scott Saylor, Registered Nurse Anesthetist

Dr. Sean Barnett, Assisting Surgeon

Friday is finally here. Getting up wasn’t as much of a chore for her like it usually is, probably because she didn’t have her tube feeding going last night. We got up at 4am and she showered again with the antimicrobial soap. It is raining and cold here today but as far as I am concerned the sun is shining. They drew blood for a type and crossmatch for blood. They took a 12 lead EKG (normal sinus rhythm). Dr. Thorvalson, her anesthesiologist, came in and interviewed her. Because her lungs were a little noisy, they ordered a nebulizor (see picture). When the nurse anesthetist, Scott Saylor, and another nurse, Cathy, tried for 20 minutes to start an IV on her, they gave up because they have to start a central line in the neck anyway. She has been very strong today, and her spirits are high. She went to the OR at 8:22 am for them to start the intrajugular access. I cannot say she hasn’t shed a few tears, because this is serious business. Ahe says that the fear of the surgery is not stronger than the fear of living life like she has. Her nurse anesthetist is Scott Saylor. Dr. Sean Barnett is going to be the assisting surgeon. Dr. Sutherland came in to the holding area to see Lisa before they took her. Dr. Sutherland said he was going to give her an On-Q marcaine pain pump for the incisional pain control. I was happy about that. They usually last about two days, and when they run out all that is required is to pull it out like discontinuing an IV. It goes subcutaneously.
Celeste told me about the cafeteria on the 8th floor and she was not lying. I have to finish this post so I can study. It is going to be a long day for me, but her recovery from pancreatitis has begun. Thank you Celeste and Jerry for your support and encouragement. You are terrific people.

2006-09-21T10:52:00.000-04:00

21 September 2006
Here is a picture of Lisa with Ann Marie from Dr. Sutherland's office. She is the scheduler and gets the patients squared away in the paperwork department. I took this yesterday, but I didn't want to put a fifth picture on the last post.

Things here can be a little pricey if you aren't careful. A coke from the refigerator in the gift shop in the lobby is $2 but the same soda from the machine on the third floor is $1.25. Stamps in the gift shop costs twice the price. So if you are going to have a total pancreatectomy, don't forget to bring stamps. I know you will have bigger things on your mind than stamps, but when you go to the gift shop, you will remember this post. LOL.

On today's agenda are chest xray and killing time waiting for Friday to get here. I know it will be here before we know it.

2006-09-20T23:17:00.000-04:00

Resident Dr. Carlson...Nice guy, compassionate. Broke his arm playing basketball.

Lisa being interviewed by Dr. Sutherland...Super nice guy...Not much on small talk.

Nurse Kerri taking a health history.

The front of the transplant building.

September 20, 2006

We had to be at the transplant building at 8am today and Lisa does not do early appointments well at all. We arrived at the office at 0803 for our appointment with Sutherland and to get what ever lab draws and preop testing they wanted out of the way. While I went off to get a couple pictures, she checked in with the lady at the desk. When I get back Lisa was mad. They told her that her preop appointment was for next Wednesday. Lisa said she about deficated in her drawers. She got angry and told the woman she was going to have surgery THIS Friday and that her appointment for preop IS today and not next week. The woman at the clinic said that her surgery was definately scheduled for September 22, but that her appointment for the preop interview is scheduled for September 27th. Tell me she wasn't sipping from a hip flask. They worked us in...imagine that. Kerri got Lisa's vital signs and shuttled us into the same room we were in two months ago, and we waited for 1.5 hours for the resident doctor to come to see us. Dr. Carlson was very nice. I kind of think he was stalling until Dr. Sutherland got there, but that was ok.

When Dr. Sutherland arrived, he went over all the usual and customary warnings and patient education stuff. When Dr. Sutherland was finished, he left and the resident went over some of the same material, but he had to fill out his part of the paperwork. He said that he would be taking care of Lisa on the floor for part of the day. When he was finished Kerri came in and told us to wait in the waiting room for lab work. Dr. Carlson forgot to tell us where to go or when to be there the day of surgery. Kerri did her best, but she usually works GI preop. Lisa had some blood drawn and gave a urine sample (her own). Kerri told us when to be at what building on Friday but forgot to give us the soap she is was to bathe with on Thursday night and Friday morning. We had to remind her when we were on our way out. When we got back to the hotel, it was 4.5 hours later...talk about not getting in a hurry. We received a call from Sutherlands office about 2 hours later telling us Lisa needed to return for a chest xray, because it was forgotten. We negotiated and we will be there tomorrow at noon. Her surgery is scheduled for Friday at 0800. We have to be there at 0600.

We went to the Mall of America. Someone in Minneapolis is making money for all those stores to remain open. We rode the merrigoround. When we got married in 1999 in Tennessee, we went to Dollywood and we rode the merrygoround. My favorite picture of that day was Lisa riding a goat, so I had to get one today of her riding another goat. We laughed and laughed. The ride for the two of us came to $4.80, but it was worth it.

2006-09-19T23:27:00.000-04:00

19 September 2006
I am posting a picture of Lisa sleeping at the Best Western. She had awakened and once she got the pain under control, she laid back down and got a couple of hours of sleep while I surfed the net and ran for McDonald’s coffee. She has her tube feeding going, and she is sleeping in her normal position. Note Wilbur (the tube feeding pump), her companion who follows her around, who knows, maybe she is following the pole rather than the other way around…Food for thought.

We have arrived in Minneapolis. It is very busy here, of course, but we are glad to be here. We are staying at the Radisson attached to the University of Minnesota, and it is so much nicer than the Best Western that we stayed in last night. Avoid the other if you are coming up here to see Dr. Sutherland. We traveled on I-74 from Indianapolis and west until Bloomington, Ill and straight up I-39 to Wisconsin. We did it that way to avoid Chicago. We are so glad we did, because our stress level was much lower. We hated that Chicago drive both up and back. I-39 was a wonderful drive as was I-74. We listened to a variety of music on the way up here: Carpenters, Hillsongs, The Beetles (she tuned them out as best she could), Slow hits stuff from the 70's.... My God, I think we are getting old! Since when did all this stuff sneak into my life. In high school I was a heavy metal fanatic. Thank God God happened. We are getting ready for bed because she has to be at the transplant department at 8am and she doesn't do well in the morning, so she needs plenty of sleep. Thank you for reading this blog.

2006-09-18T22:02:00.000-04:00

18 September 2006
Well, we are finally on the road. We stopped once we got into Illinois to get some coffee and to relieve our aching bladders. We like McDonald's coffee when we travel and when we saw the sign, we hit the off ramp and when we got near the McDonald's, I said, "Oh my Gosh. I don't believe this!" It was the same McD's that was next to the Best Western in Danville we stayed in that night we got the call from the insurance company denying us in August. What are the chances.
We miss our Ashley and our cats. We are staying the night at a Best Western Clock Tower Resort in Rockford, Ill. (7801 East State Street, Rockford, Ill 61108) Room 1103. It is small, but we will be gone tomorrow anyway. We will arrive in Minneapolis late afternoon or early evening. We don't leave first thing in the morning, because Lisa cannot move well in the morning due to her illness. It takes a while for her to get moving and that is ok. We don't have to be in the University of Minnesota until Wednesday morning anyway.

Michael

2006-09-11T19:39:00.000-04:00

In my hot little hand I hold the contracts signed by the insurance carriers and the University of Minnesota. The surgery for September 22,2006 is a go, I have to be in Minneapolis, Minnesota on the 20th for clinic. We will leave on the 17 as it takes 2 days to get there, and my clinic appointment is at 8am. They will be in for a site, I am not fuctional at 8am, let them see me scream, it is about time.
The fear of surgery is not there, the fear of life as I know it is more real. I would rather die than stay this way. But, that is not God's plan, I will live to Glory his name again, and tell of his wonders and love for his people. Maybe somehow my story will bring someone to know Christ. Maybe, my testimony of all I have been through will bring someone to know that who can be against you if Christ is for you. I know that I am more than just a conqueror, for my KING has conquered the grave. He held the keys to death and the grave and asked it " death where is thou victory, grave where is thou sting" He knew before the foundation of the earth, before you or I existed how it would be. How it would be for each and everyone of us. He is faithful. I say that not because I have gotten what I wanted, but because he is faithful and his will be done. Even if God never did anything else for me, the price that was paid for me the day Christ died and took the punishment I deserved then that would be enough. Either way I win. If something should go wrong, I go into eternity to him, what could be better than that? Nothing I could imagine. Quote from Hillsong. Jesus, Jesus, you are Holy, Heaven and Earth declare your Praise both now and ever more, I will glorify your name.

2006-09-10T13:17:00.000-04:00

Well today is Sunday and I have never received any of the documentation that was to be held by my husband's employer. I don't understand the HR benefits person, calling me and telling me she had the documentation in front of her last Friday ( before the long weekend) and to schedule my own surgery. Then to find out later last week that no one has ever signed the contracts. I waited all week long for them to fax me a copy of something; as I am not leaving my home without some documentation. I did received a fax after calling and demanding one from the nurse case manager, which is the same documentation they have provided the University of Minnesota for the previous trip ( when they called us, and said we aren't paying for this surgery)
I am to have major medical insurance and transplant insurance, but for this surgery the transplant insurance is only going to pay for the islet cell solution, harvesting and reimplantation. There are so many people that do so little, I don't honestly know why they even have a job. It appears that each insurance company has at least 5 people working behind the scenes, and then each hosptial has the same amount, multiply these together 2 insurance carriers to hospitals and then add the stop loss carrier there are approx. 25 people working ( I wouldn't really say they are working, if you were to ask me) on this, it appears that there are 25 people making somthing so simple way too hard. I was told on Thursday that the Drs. administrative assistant wants to cancel the surgery date, and the financial services person says we are not cancelling this time, we will just make them give us what we need. It remains to be seen if this surgery will occur. If it has to be cancelled I assure you that it won't be done by me this time around, I will physically go to my husbands work and make the lady who called me on the phone make the call and cancel it this go around. My husband earlier in the week told them we need something in our hands, as there are arrangements that need to be made, hotel accomodations, travel arrangements, FMLA needs to done. I still have nothing signed. I will keep this updated as things occur. My husband has been given the name of attorneys by surgeons he works with, I would prefer to not have to go that route, but I won't promise that I won't when all is said and done. We have transplant insurance that is suppose to pay for lodging, travel and meals, even though I don't eat, my husband does and he will be with me in MN for almost a week. This policy is to cover these things, and I just personally think they don't want to pay for anything. There is some blame to place on the employer for having a policy that they can't find and for not taking a look at it since it was purchased 12 years ago. Someday they will have to pay for neglect of duty. But in the mean time I just want fixed, to live a normal life, like other people and not be so sick that I can't do what needs to be done.

2006-09-06T08:59:00.000-04:00

September 6, 2006
It is with great joy and PRAISES that I tell all that I have a surgery date. I found out yesterday from UM. They had a cancellation and my surgery will occur September 22,2006 that is the tentative date, as yesterday they were still awaiting documentation, which I have been assured is at my husbands work.
The transplant carrier is not covering the whole surgery as they should, but at this point we just want the surgery, those issues can't be delt with at another time. I am to be in MN on the 20th for clinic. I am so relieved, I just want the beast that dwells within my body out. Soon this will happen. I know that this will not be easy, nothing in life that is worth doing is ever easy, but we do what we have to, take the good with the bad and push forward. Everyone in my house is happy again.
I am still very painful and will be until this creature that has assumed a life of it's own is gone, but at least there is again hope that life without a pancreas will exist.
I am also greatful that we will not be traveling in MN during the winter, my biggest fear was that my husband would have to commute back to Indiana for school, during a MN winter. They are pretty bad from my understanding.
I wanted to say a big heartfelt thank you to the patient advocacy foundation, who really helped with this, without their assistance and Tonya Walker this would not be happening. If you find this blog and use their services you will be amazed that there are still good people in the world. I owe them my first born ( joke)for all the work they have done on my behalf. Here is a link
www.patientadvocatefoundation.org they can and will help you, there are no financial guidelines and they help with issues other than health problems such as debit crisis. At least check them out. They also have a group that you can join that helps individuals connect with their elected leaders. I highly suggest that all Americans get involved in the process, we put these people in office and they work of us.
Most of all the Praises I sing are for my KING, Jesus, whom without I would be lost. There were times that I felt the doorway to heaven was bolted shut from the inside. As my Pastor always says" People want the testimony without the test, they just want the mony" It is turly after we have been through the fire that the bad has been burned off, and we come out clean again. I close with the words to one of my favorite songs written by Hillsong. HOLY ONE, HOLY ONE, all creation bows to worship, hallelujah, hallelujah, glory in the highest, I will sing, and I will sing you, Praises, forever, glory in the highest and I will sing you Praises forever, God he REIGNS. God he reigns, holy is the Lord of heaven, God he reigns ,God he reigns forever more.
There music is some of the most beautiful music I have ever heard, there have been times, when I have went to bed at night with this music on my Rio ( chepo ipod) and listen to this in my sleep. I does help my spirit. I will keep all informed as to how things go, my husband will do the updating while I am hospitalized but it is all in God's hands as it was before, nothing will happen as a surprise to him, nothing ever does. This surgery will not happen one minute before God is ready for it too, and I will not leave this earth one minute before he appoints that I should go.

2006-09-02T09:21:00.000-04:00

September 2,2006
Yesterday I received confirmation from my husband's employer thru the HR dept. They have a breakdown of all of the charges. Transplant carrier has decided now to pay for the islet harvesting fees. The other will fall under the major medical portion of my insurance. I was even told by the HR person over the benefits that everything as far as the charges have already been broken down and are all in writting, I was instructed to call MN and ask for an appointment for the tp/ict surgery. I informed her that they won't take my word for it, they want it from the responsible person and will want documentation to make sure this time that they don't scedule a surgery and then have it cancelled. This looses money for the hosptial also. When they block off 12-14 hours of surgery time, and then it is cancelled these are surgeries that are planned months in advance. So it appears that I will be having the tp/ict after all, now all I want is a date, and I hope they don't make it in December. I have even told them I will take an on call status, in the event that someone would cancel, I will take their spot. I want this pancreas and duodeum out of me so bad I can't stand it.
I don't know if has been the stress or just the progression of the disease in and of itself, but I have had 2 ER visits within 10 days and it took mega doses of medications to stop the screaming that had started at 4am. I had home care with IV fluids for 3 days as I could not tolerate half strength tube feeding. Then again this Tuesday I woke up to my usual screaming only could not get it controlled enough to calm back down, so back to ER; they could not get an IV established because my veins are trashed and I was dry, so I received 2 shots in the rear and then was taken to radiology and had an IV established under ultrasound, and it hurt. But we do what we have to, my back hurt worse than the IV. Once it was going then I could obtain pain meds through the IV by then I was already getting sleepy from the injections, would sleep and little and wake up and say " it feels like my spine is collapsing" I was finally discharged with my pain under control and given 10 higher strength pain meds to have when this occurs. None of these visits should have EVER happened I should not have had a pancreas at that time, but after the surgery is over and I am healed that issue will also be delt with. I encourage anyone who is reading this blog if you are having problems with your insurance carrier not wanting to pay for things that you know are covered and they are trying to get out of it , I emplore you to contact this office, it is a non for profit agency that has the staff available to address these issues for you . Being ill, I would have never been able to fight them without assistance, and I am to sick to be running all over Gods green earth looking for an attorney. It is because of this foundation that my surgery has been approved they can be reached at www.patientadvocate.org an intake worker will take your information turn it over to a nurse and then they will contact you. The only thing is that you have to sign a paper giving them permission to work on your behalf. The nure I worked with was awesome she knew exactly what to do. It was her idea to split the charges between the carriers. This is what they are there for. I will post as soon as I have a date . I leave with this " My Savior, reedemer lifted me from the miry clay, Almight,Forever. I will never be the same since you came near, from the everlasting, to the world we live, the fathers only son, you lived, you died, you rose again on HIGH, you opened a way for the world to live again, hallelujah for all you've done." Words taken from a Hillsong tract titled : For all you've done.

2006-08-29T19:21:00.000-04:00

August 29, 2006
My second ER visit since the 20th of August. I knew that my pancreatic disease was progressing, but I didn' t not realize the rate of the progression. I had told my husband prior to our leaving that this surgery would be coming right on time, as I knew I was getting more ill as the days went by.
Since I did not have the surgery, and my disease pancreas and duoduem remain, I am quite honestly miserable. None of the pain meds work as well as they did. I am going to attempt to make an appointment with chronic pain managment to increase the dose on the pump. I had thought about it prior to the surgery, but decided against it, as it would just be more meds to detox from. But at this point the only decent rest I have had is in the ER twice in the last 8 days. I was dehyrated and they could not get my IV started and had to wait 2.5 hours for the radiologist to get it, and she did a terrible job. She used a 2 inch catheter which was in the bend of my arm, thus if I moved my arm wrong the machine would scream " occlusion". I know the last Sunday it took 12 mgs of Morphine to stop the screaming, I don't know how much medication I received today, probably enough to kill a normal person. This disease process is causing so much problems. I am unable to do what needs to get done, I am grouchy because I can't sleep at night more than 2 hours and the unrelenting pain, just won't stop. Having the pump being increased is not going to take the place of having 2 very diseased organs still in my body, but there isn't a whole lot that I can do about it at this time, but roll with it and attempt to tough it out. I have however made up my mind that I am no longer pretending that everything is alright with people I see out and about, ( which I have been to 4 places in the last 3 weeks) twice to the ER, once to a partial church service and then to Wal-Mart). I feel like a prisoner sentenced to life of misery and there are no options. I have started to ask God at night to not let me wake up anymore, just let me fall asleep and die. I hope this blog is helpful to someone with pancreatitis.

Lisa

2006-08-21T14:39:00.000-04:00

August 21, 2006

Today is my wedding Anniversary, and sick again. I have been diagnosed with acute pancreatitis again. My husband had to take me to the ER yesterday as the medications I have at home were not helping and all I could do was scream. I was however given the option of admission to which I declined. It took 12 mgs of IV morphine to stop the screaming. Once home I was able to finally lay down and get some sleep. I have called my pcp requesting to stop the j-tube for a few days and go with home care and go straight IV's to rest things. The pain is so much worse when the tube feeding is going.
I did talk with the nurse case manager and she agreed with the home care. I can take care of the IV myself as I am a nurse. She did have some postive things to tell me, but I won't post them as of yet, as they may fall through. I am begging any one who reads this blog to take action and stand up for those of us with this disease. The following link will take you to the Patient Advocacy Foundation that helps people like me, who have issues with there insurance.
www.patientadvocate.com then at the top where it says different things. Go to AAA this is where you can join and they give you the chance to say something. Tell them you want to see total pancreatectomy with islet cell transplant as standard of care for those of us with chronic pancreatitis. And that you want it to be Medicare payable. Making our representatives in local and state and government aware of our situtation is the only way they will ever know about us. As Dr.Sutherland say's if you have had symptomatic pancreatitis for more than 6 months the pancreas needs removed, it will never heal, it will just keep getting worse. Pancreatitis is a progressive disease, no matter what you have been told, it is progressive. ERCP's will not help, neither will stenting and opening of the ducts or anything else that is standard of care at this time. It makes more sense to pay for the surgery than to have people on SSD and medicare for the government to pay for them, fix them and make them tax paying citizens. I have no problem working, but I can't work like this. I have not worked since 2000, I had no idea that this surgery was even available until earlier this year; since then I have been attempting to get it done. I need to go to bed now, as I am fighting the demon that lives within my body. One last thing, I calculated what the insurance company pays for pain meds for me it is almost $45,000 a year plus having my pump filled every 50 days is another $1200.00 which makes more sense spend the $19,000 and be done with this or continue on until I have used up all of my insurance on pain meds, and the real problem has not been addressed.

Lisa Atwell

2006-08-17T12:08:00.000-04:00

August 17th, 2006

I feel like I should be posting something on here. Even though I have no news to post. I know that there are some faithful followers out there who read, even though you won't leave a comment.
I have to leave the surgery issue behind me now and focus on what I can do to prevent this from happening to someone else. I would like to embark on a new journey of HOPE. I would like to being by saying that the surgery Total Pancreatectomy with islet cell tranplant should be a standard of care for those with chronic pancreatitis if they choose to go this route. I would appreciate any assistance from anyone who knows anything about legislative reform. One question I keep getting asked if why doesn't medicare pay for this aspect of the surgery. The problem for everyone seems to be the cost of the University of Wisconsin Solution needed to obtain islet cells for reimplantation. My answer is I don't know. The only thing I do know is that the hosptials will not book an operating room with insurance approval to pay for this solution. I need a driving force in my life and I have choosen this one to be it. Any assistance that anyone could give me would be so helpful. You don't know when the next person maybe someone in your family that might need this and I don't want anyone else to have to fight to get this done.
I will leave this I am a human, a person who is here, I should be taken care of if the technology is available to take care of me. I am not asking for a hand out, I am the type of person who is willing to work. I am a nurse by profession, a care giver. Although pancreatitis took this away from me, I am still a nurse in my heart, and that is something pancreatitis will never get. It makes more sense to me to fix me, let me work and pay taxes and be a productive member of society than to let me push a tube feeding pole around for nutrition and live off pain medication to make it from hour to hour. The technology is available to fix me, but it seems that I can't get it paid for, this is the craziness of the world we live in. This has to stop.

2006-08-11T13:21:00.000-04:00

August 11,2006
It is with a heavy heart that I post my surgery was denied. My husband and I had left for our appointments, had stopped for a potty break and a drink for him and the cell phone rang. I had just bought it a prepaid for him traveling back and forth. I knew no one had that number except home. Apon answer it was the major medical insurance carrier. I guess there was a question as to the cell transplant and the transplant carrier had denied. I know no more today then I did initially. I have spoke with many people from my husbands work and their major medical carrier but have heard nothing from the transplant carrier. I cannot appeal something that I do not have a written denial. No one had even bothered to notify MN, when I called and told them that had no clue.
At this point who knows what is going to happen. I know one thing my j-tube needs changed. It was suppose to be changed a month ago, but I knew it would be changed in surgery so I spoke with the radiologist and he said it would wait. I didn't want to waste the 4k it would cost. So I need to get that done. For now the blog will stay as it is, if I ever get any information I will post it. So we learn to continue to live with pancreatitis, knowing there is treatment available but I can't have it. Unless, of course I want to pay the $18,883 for the cell transplant, for which I do not have. So another day, another week, another month will pass, islet cells will continue to be destroyed, if there were very many left anyway. What ever will be, I have no control, and no money, so that is life, another learning experience. I will however NEVER leave my home again without some written documentation that I have received approval, to which I have been told will never happen. That there will always be a disclaimer on there, not a guarantee of benefits and that benefits will be determined after procedure is submitted. I don't know how they look themselves in the mirror or sleep at night. I do know there will come a judgement day and for them that day they will pay for their Sins, and I am sure they will get what they have coming. I am a child of the MOST HIGH GOD. Jesus is my King, my Father, and MY PRINCE OF PEACE. He is my advocate, and in the end I would rather be a child of God than of this world. That is one thing no insurance company can take from me. I choose Jesus, because he choose me first, I was on his mind, while he hung there dying, I was on his mind, and that is GOOD enough for me.

2006-08-06T16:37:00.000-04:00

7 August 2006

We are getting ready for our upcoming trip. I packed all the electronics and she has been packing all the clothes. We are going to be leaving on Monday some time, but we haven't pinned ourselves down to a particular time yet, because we want to leave when we are ready and not before. Lisa is very anxious but knows that this is her best shot at having a normal life again. When people ask me about the surgery and say that it seems drastic, I tell them this: This surgery is like being in a house fire, trapped in the second floor bathroom, and the only exit being that little window with a long drop to the ground. It isn’t your first choice, and you wouldn’t squeeze your butt through that little window until the smoke was rolling under the threshold, but when the time came you’d do it. No one chooses to have this done unless the disease forces them to. God is our strength, our rock and our refuge. When we are weak He is made strong in us. God didn’t take us this far to drop us off of a cliff, and we know that He has a perfect will, and we pray that it will be done. This will not be easy, but others have gone through it and most have had a marked improvement in their qualities of life. We trust God for a healing and a safe and speedy recovery.

Michael

2006-08-04T09:43:00.000-04:00

August 4, 2006
Well one year older nower, still don't feel any different than I did the year I turned 8 and got my purple bike with the big white basket on the front ( I hated the basket) it was 70's still with big flower " flower power". I mean inside I don't feel any different. The body however is shot and I know that one.
I went to the pcp yesterday before going to MN. I wanted to have everything available to me, I know MN provides insulin syringes and such, but I don't want to get loaded down with all that stuff and have to make my way by myself through the airport.
I asked for a few more Actiq as my needs have been higher with the levels of pain. My pcp the greatest of Drs. just looked at me, I know that disappoving look, what am I suppose to do get to MN and run out.
My nerves are gone, I am terrified, the nurse in me knows what they are doing, and everything says " don't do it, back out" but if I let this opportunity pass me by, I won't get it again. When I think about it I cry. So there probably won't be many posts by me until my husband posts from the hospital.
I have to go to get my pump filled today as there is not enough medication in there to last for the post op period, it is a must. Plus almost a 200 miles drive total. On the way back from the Dr. yesterday my maintence required light came on Yet I have to drive today and then MN this week. I called it the dealership it is a reminder to have the oil changed, for which I made an appointment for Saturday. I cannot imagine life without the way it has been for so long, the pain, the hassels, I will trade this away in a heart beat to be normal again.
It is the fear of the unknow that always gets me, I am worried about my husbands safety traveling back and forth for school. But there is no one else to help, so we do what we have to and hope this works. I don't have the strength to think if this doesn't work, what I will do if this is not a success, I can't let my mind go there. Deal with one thing at a time.
The last thing I want to say is that if someone with a family is reading this and they have a person they know that has pancreatitis. The pain you see if real, it is not made up, we don't know what to do or how to handle it either, if we could stop it we would. No Dr. usually knows what to do with us, we are the faceless the the crowd of ill people. I have heard pancreatitis described as an invisible disease because you can't tell by looking at the person. The pain we feel is real, the social isolation is horrible we feel so alone, because no one understands. People that really CARE try to be available for us, to help us, but it makes us feel worse, because the last thing we want is to be a burden. We hope, we wait for life to return to what it once was, and it never comes back. Days turn to months, and months turn to years and nothing changes, everyday it is still the same pain. No running away, no getting away, no where to avoid the God aweful pain. People begin to call us " drug addicts" and look down upon us, we loose our independence because we can't work anymore. It just sucks. Have I planned suicide before you betcha as most of us do. I was going to hang myself in the gargage until I realize my daughter would be the first one in the garage coming home from school, that wouldn't work, I couldn't let her find me like that. So I chose not to do that, no I only traumatized her childhood and young adult life while watching someone slowly die, from pain. The screaming and yelling and pacing the floors, the hospitalizations not knowing what each day would hold. For that I am truly sorry, if I could have changed it I would. Maybe it made her the person she is today, maybe someday she will meet a person as a nurse with pancreatitis and remember Oh, yea, I know how bad this is; my mom lived like this and she will be a better person and more appeciative of a life without pain, and treat people better with pancreatitis than a nurse who has never seen it.
I am closing my part of this today, I hope you all that have read have learned something about us, we are humans who deserve to be treated with respect. You never know you may wake up some day your life forever altered by an organ gone bad, because of nothing you have done. Bad things happen to good people, why, the eternal question; that one I can't answer. Strive for the best, never give up, keep putting one foot in front of the other, eventually it makes a step and then two. And before you know it you have won the race of life.

Mrs. Michael "Lisa" Atwell

2006-07-31T20:13:00.000-04:00

What a lovely picture of a swollen belly. This is what happens to me at times. Yes, that is my j-tube, this is not a picture perfect shot. But I felt it necessary to take, so that others who deal with similar circumstances won't feel so alone. Once you have had a child everybody and their brother has already seen EVERYTHING one has to offer anyway. Pancreatitis is what it is and if this embrassing picture helps one person then so be it.
These past two weeks have been trying. Everything I have attempted to do has been a huge hassel. If I make it to MN in one piece it will be a gift from God. There have been several times I have thought about going to the hosptial, pain control is not working. I have come to the conclusion that the only thing that will help, is removing these disease organs. 2 weeks from today it will already be a done deal, thumpy will be out, and then the recouperation period will start. I worry about pain control with the surgery as I am soo very opoid tolerant. After 10 years who wouldn't be. I just have to keep the faith that God will see me through. I have not been the good Christian that I should be these last few weeks, and I am hoping that God will look beyond my humaness and see my suffering. My heart is true in my efforts to help people with this disease. I guess I just need to spend more time reading my Bible and give it up to him. I keep too much inside myself, and keep myself too stressed. If any of you from the boards are reading this, I think of you all so often and wish for ALL of us that this could be so different then what it is. God bless and no that you are all always in my thoughts. Especially you Sandy, Susan, Celeste just to name a few that come to the top of my head. I am very painful now and must go sit on my homedics back massager and put the heating pad to my aching pancreas. Keep those chins up, someday this will all be over. We will have new bodies, perfect and without defect.

2006-07-30T06:28:00.000-04:00

July 30,2006
It is now 6:24 am I have been up for hours now, in pain. I always wake up at night. I went to bed at 11:45 later than usual. I woke up about 4am, to the usual pain, pain, pain. I get my usual meds in me, but my body still reacts to the pain I feel. It has quited down enough that I no longer moan. But as I sit typing or trying to watch TV the tears roll down my face. To which I have either gotten so use too or no longer pay any attention too. The brain is made in such a way that when we have physical stressors or physical pain this is a response to that pain. I really don't even realize I do it any more, until I have to get up to wipe my face because it is soaked. I am not even aware that I carry tissues and have them stuffed everywhere. This has went on for so long I don't even think about it anymore. This is me, I don't want pity, I am just writing about my life and how pancreatitis affects our lives, mine in particular for this blog. I can't fathom that 10 years of this nastiness has passed by me.
In addition to the pancreas pain, I am having some issues with the implanted pump (intrathecal pump) when it was placed I had some complications. Apparently I had unknown arthritis of the spine, what was suppose to be a relatively easy procedure was a nightmare. I woke to the feeling of my toes on the left foot feeling like hot saws were cutting on them. I took off the provided hospital socks ( only lt sock) and knowning everybody in surgery because my husband works there. For some reason everyone felt the need to touch that uncovered foot, sending shooting pain up my leg. By the time I got to my hospital bed, it was worse. The Dr. at the time, said he thought he touched the L-4 nerve root ganglion attempting to get the catheter in. I was laying in the bed screaming asking the nurse to help me. All she wanted was to get her assessment done and finish my history and physical. My husband was begging her to do something, while I screamed and cried. Eventually he had enough of her questions ( Mrs. Atwell how many times a week do you have a bowel movement) I was obviously distressed, my husband left the room to get her supervisor. They all stood around my bed, looking, the supervisor says to my husband" well how does she usual act" He told she is in chronic pain, but this is different, he finally got tired of it and went and got the Dr. He started telling them orders to which they stated " we can't do that here, she has to be on a monitor for that, we aren't prepared for that here". supervisor said " if you write it then maybe" I heard him say " shit" and left the room. Prior to the nursing supervisor coming into the room, I told my husband " take the pillow out from under my head, smoother me with it, put it back under my head, walk out and let them find me and call you and tell you they found me dead" I was serious, his reply " Lisa I can't do it" I begged him, I realize now that was more than he could do, I just could not take anymore. The Dr. did give me an IV injection of versed to calm me down and ordered IV steriods to calm down that irritated nerve. On occasion I will feel that twinge down my left leg and it is quite painful. I tried taking Advil once, without food wouldn't recommend it. It was like taking battery acid about 40 minutes later. I will be glad once the tp/ict is over maybe in a year from now the pump can just totally be shut down. They tell me now that is the beauty of the old style pumps, they can fill them with sterile saline and then shut them off, they are there if you need them otherwise just shut it down. That is my goal shut it down. I am just trying to make it day to day until the surgery. The surgery, the surgery. I want it done and over with and to all ready be back home recouperating. I have said before it is happening right on time, much more of this and I would need a major medication increase. I don't want to increase the meds in the pump, it will just be more to have to detox off of, and that really isn't so bad, but if I can avoid it I will.
I guess it is the old nurse in me but I am a planner, plan, plan my life away. I have considered even writing out funeral arrangement, I have to have it the way I would want it. One can never be too prepared. What songs, what clothes, all that type of stuff. I learned early in life the only way to get something done, is to do it yourself. It is to time consuming to talk others through what ever the issue and they don't usually care what ever the issue is anyway.
I am contemplating getting one of the video services that delivers movies to the door. You pick out your wish list and when you return one then they send you another. If nothing else just for a few months. There are alot of movies that I would like to see, I just don't take the time to watch them. I think I have adult attention deficit disorder, always on the move, never sit down, until I am so painful I have no other choice. Maybe it comes from being a single parent and doing all the jobs that 2 people should normally do. Previous to pancreatitis, I worked as a nurse, mowed the grass, shoveled snow. Kept the house up; inside and out and did all the cooking, cleaning that had to be done. I even once had a life where I could plant flowers. Flowers in the yard, love them. Especially periannuals they are such a gift. Back every year like clock work, short lived but back every year. I can't wait to do this again. I once loved to decorate my home. We have since moved and I haven't had the strength to do major things to our home. It has the potential to be a nice house. I really am quite particular about how my house is kept. I have never understood people who get up go to work and live like pigs, for heavens sake it is hard earned money, why make an investment and then not take care of it. I do however need to let others in the house take responsibility for their part in the upkeep. They know if they don't do it, that Lisa will eventually see to it that it is done. My own fault I suppose, I refuse again to live like a pig. What I have I worked myself almost to death for and I refuse to let it fall apart.
I am beginning to get sleepy, so off to bed I go. Another Sunday of missing Church, hopelully God understands? I can't wait to go to bed at night and get up the next day, ready to tackle the day.

2006-07-28T18:22:00.000-04:00

Friday, July 28, 2006

July 28, 2006My time that I feel productive enough to get something done has been consumed with attempting to cook and freeze food for my family. Last year, while trying to find something that I could eat ( that would not cause terrible pain) I saw on TBN a man named Rubin Jordan. Who has an awesome testimony about a G.I. disease that almost took his life. If your interested to read the website is www.makersdiet.com I started this diet and put everyone in my family on it. I did learn some things although this diet focus' alot on fat which we all know we can't tolerate. I will say that between the time I started this diet and the tube feeding it did keep me going. I ate things that I never EVER thought that I would eat. Something called kefir which is basically spoiled milk, I used it on organic cereal as protein intake was real hard. Meat is terribly hard for me to digest and I had to come up with an alternative. I tried protein bars, but they hurt just as bad as meat. I gave up all simple sugars and pitched out everything in my cabinets that weren't whole grain. I joined a food co-op for the ability to try new foods and spices. There I can buy 1 teaspoon or less. It was an interesting lesson. They cook lunch there everyday as it is located on the grounds of Earlham College. I did buy some cooked cousous once with roasted veggies and rosemary. It was quite tastey actually. Everything they cook there is vegan, so when in Rome do like a Roman I suppose. We are all eagerly awaiting Augusts arrival, wish our lives away. I just want thumpy out and anything else that has to do with thumpy, so I guess that would the duodeum since they are one and the same. I am glad for the week end my poor husband works full-time and is in an intensive BSN class. It is a get it done in 18months type deal and each class that would normally take months at a University lasts no more than 5 weeks with the way he is doing it. It will be over in the spring on 2007. Then on to graduate school, for what he has not yet determined. He kicks around the idea of NP ( nurse practioner) but he is not sure. What ever it is he will do well with it. I will brag on him, he ALWAYS has the highest GPA in the class, it will settle for nothing less. If my surgery is successful I plan to return to high education again myself. Probably a degree in health care adminstration, since nursing is out, with the lifting, tugging and pulling on people. I have worked in a nursing home when I was a young nurse and it was ok then, but my skill level when I left nursing had grown so much, I don't think I would ever be able to go back to that type of nursing. I worked in occupational health when I left it was a subdivision of the ER and I worked in the ER in the mornings until our Dr. arrived. Boy, I sure did learn alot there, you either learn or leave, adapt or get out.The pain from the pancreatitis is getting worse. I think the timing for the surgery is going to be right on time. Any later and I don't know how much more of it I could stand. The j-tube is holding up. It was suppose to be changed last week, but I discussed it with the radiologist who placed it and I believe Dr. Sutherland mentioned replacing it so I saw no need to do it twice within 3 weeks of each replacement. I want to save what insurance money I have, I may need it. I am quite suprise that no one ever leaves any comments. Does that mean that no one comes here? I don't know. Am I doing this as a waist of time? I guess if one person stumbles across and finds help then it will have been worth every word of it.If you do come here, if you don't want to comment that is fine. Ask me a question Iwill get back to you, I promise.The picture that was drawn was done by my husband. This post picture of my daughers 21st Birthday last year. I am the one with the white long sleeves and brown stripe shirt. The little dish next to me is my baby.

2006-07-23T18:53:00.000-04:00

July 23,2006
Purple my favorite color. Yes, it is beautiful. Every flower, or at least most that I have ever planted in my life is purple. My wedding dress I wore was actually purple. The picture that was posted yesterday was drawn by my talented husband. Why he puts up all my non sense I will never know. It would be so much easier for him to just walk away.
I woke up this morning at 3 to the sound of my own voice. It was about 3:10 the only thought I had was, they programmed my pump to give me 0.5 mg extra of morphine why am I doing this. Then I thought " boy I would really hate to think what it would have felt like without the extra medication" I stayed up until about 7 am cruising the internet. Not much out there when your in pain. I then went back to bed and slept until almost 12:30pm. I had my husband shut the door so the cats wouldn't walk on the head board and fall off. Or try to get to the dresser that has the old tube feeding bottle that I switched out when it went dry ( cats can smell milk a mile away, trust me on that one)
My days are filled with nothingness, to painful to get involved in anything, it takes enough pain medication to just sit. I haven't gotten dressed today. I did get dressed yesterday, it lasted about 3 hours. I have although brushed my hair, yea for me. I am quite the critic of late. Don't have anything to say and when I do say anything it is usually not very nice. It is not anyone at this houses fault, but sometimes we take things out on those we love the most. Not intentionally but just because they are here. My husband never waivers in his resolve to me, and his faith is much more than my lately. He believes that God will see us through. I am ashamed to say it " but I have given up that on that one" " Is there a God that would let us go through such things?" I don't know anymore. The gates of Heaven are boarded shut and locked or so it seems to me. Honesty is what you'll get from me. Am I damned to hell for this one, only He that made me knows that one for sure. Is this hell, you betcha. Hell for all involved. Would it not be easier for the insurance company to just come right to my house and put a bullet in my head. Yea, and right now I wish one of them had the guts to do it. I would probably help them, I know I would let them in. In the end we live in an unjust world, and people everyday die from the indirect hand of people with far too much power. The power of the written word, the power to make decisions that affect and effect the whole world. This world is a cesspool of what it was intended to be. I know one thing for sure "you reap what you sow" and for those in the decision making processes of life, they will get what they have coming eventually. We may never see it or hear about it, but I have known for years " what goes around comes around" I am going to try and download of picture of me attempting to get comfortable today, not a pretty sight.

2006-07-22T20:11:00.000-04:00

July 22, 2006
I have not posted for several days as I had an appointment with the Dr. that fills my intrathecal pump and while I was gone I had received a call from Minnesota finacial services dept. I knew immediately that something was wrong, it was too late however for me to reach anyone there.What was the issue that day and was resolved has now become a different issue. I personally believe that the file sat on someones desk too long and they are attempting to determine a way out of the approval that had been given previouslyI can assure you that I am pissed to no end, and am ready for what ever fight is to ensue. I knew that when I had approval for this surgery in 6 days that it went to well, especially for an insurance carrier that has denied routine hospital stays for dehydration. Believe me, this is not the first time they have denied medical procedures. When I had the j-tube inserted they would pay for the j-tube insertion but not the food " as nutritional supplements are not covered" give me a break. Anything I eat causes so much pain, I wouldn't begin to eat. That is why I lost 40lbs duh.I truly understand why people go "postal" I really do. There is only so much that one person can humanly take. I have gotten the plan book out and it discuss this type of transplant which is no different than a bone marrow transplant. There are other types of these transplants just I don't feel like listing them all. It basically boils down to they don't want to pay for it. I spoke with the lady from fianicial services at UM and she said " they have NEVER recieved authorization and then have taken away". Never. They have not cancelled the surgery, yet. Only time will tell how this will play out. I can tell you that they are aggressive looking for a way out. The HR person at my husbands work can't even say the name of the procedure and then told me that their so called insurance company pays a physician board to determine what classification it falls under. No they pay them to deny services, my husband works with a Dr. who once worked for an insurance co. and they would give them HUGE bonus' to deny surgeries anything to save them money and if they saved them enough then they would give them big incentives to continue to do so. She finally left because she knew they were killing people. I have honestly said " I was not looking forward to this surgery, I was afraid, but that I knew it was a means to and end" It is terribly difficult to see the light in the tunnel and now have the tunnel capped of to prevent you from seeing the light. If it doesn't happen, then I was willing to have it done. I even told the HR rep what kind of idiot am I that I would willingly let someone take out my pancreas, duodeum, spleen and 1/3rd of my stomach? Does that tell you how bad I feel that I am willing to let someone do something so radical to me, in hopes that it will work. I can no longer eat enough to sustain life, they have been told that without this surgery I will probably never eat another meal. So I guess they don't think that in the long run with all of the tube feeding supplies, and the pain meds, and the pump refills, and the surgery to replace the battery when it is dead ( in 2 years approx) that they would save any money. They don't look long term they look at what has to be paid out in one sum. It would be cheaper for them to pay for the surgery and be done with it, than to continue paying for all of the other stupid stuff I have to have. God is still on the throne he has left for one day and he isn't going to. God's will be done.

2006-07-17T17:30:00.000-04:00

July 17, 2006
Another day awake at 4am. Pain meds in at 4am and then 8am and then able to go back to a light sleep. Up again at 11:30 awaiting that half an hour for more pain meds. I managed to make it through without taking pain meds again until 3pm. Can't say that they are helping that much anymore. I keep telling myself hold on just another few weeks and this "monster" inside will be out of you.
It is terribly hot outside, probably too hot for me to go out. There are things that I need from the store, it will wait until it gets a little cooler for me.
I have to drive on Wednesday for my pump to be filled. I have an intrathecal pump ( pain pump) it has to be filled about every 6 weeks. If your interested in learning about them the web site is www.medtronic.com this thing helped so much when it was first put in. I went from being bedfast to up and able to bathe myself without assistance. It truly was a gift from God. What I really needed was to have my pancreas removed, but there are few surgeons that are willing to do such a radical surgery. I may have heard of the tp/ict before, but some how didn't think it was for me. With the tube feeding a failure, I feel I have no other option, and I can't continue on the way I am. I will be 40 in the next few weeks and if I don't get off of the pain meds then I am going to have issues related to them. Kidney or liver problems, so the tp/ict must happen. I am however going to be truthful and say that I am not looking forward to it, but it is a means to an end. If I get a 25% reduction in pain then it will be worth it. Today has been bad I may not make it to the store, I will probably be lucky if I get supper fixed for my family before I am back in bed. I didn't get dressed until 3pm, I hate for my husband to come home from work and see me still in my night gown it looks like I haven't done anything. Which is not true, I like the way they hang from my shoulders no pressure around the abdomen or j-tube site. Soon this will no longer be an issue. August 11th get here soon. Better yet make it September 1st so I can be back home, with my husband, daughter and feline children.

2006-07-16T16:22:00.000-04:00

July 16,2006
Another week gone by. Getting closer to surgery. I will be glad with this is all over and I am back home. I don't want to leave home, it is my safe harbor, but unless we step out nothing will ever change.
The pain has been a real challenge this week. I am having great difficulties doing what I need to do. I also lack the energy. I am always so tired, that is one of the things about pancreatitis, the fatique is awful. If your not in pain, your too tired to do anything. Sometimes I just have to go to bed for a couple of days and sleep. However, this does seem to help. It is once I am back up, the things that I would have or should have been doing are backing up around me ( laundry, dished,) you get the idea.
Then you wear yourself out again, trying to accomplish the things that are never ceasing.
I missed church again, even went to bed early to go, once the alarm went off, I didn't have enough strength and the pain was to hard to get controlled. I looked at the clock and it was 9:29 not enough time to get ready. I would have been miserable anyway. I checked my e-mail and then went back to lay down, I got terribly sick to my stomach so back to bed for me.
I am spending more and more days in my nightgown, clothing is too uncomfortable. When I do get dressed it is only for a few hours. I think this surgery is coming at the right time, waiting any longer and I will be way too sick.
I have had 2 friends from the internet boards I belong to have this surgery done in the last 2 weeks, and they have had some complications. Hopefully these will be slight set backs and there healing process will begin to kick in and they will get the life they so desperately want.
Some how we learn to live with this, is it God's grace that gets us through. I can't answer that one right now. It surely must be because I haven't the strength for this much more. I remind myself once again that I am fearfully and wonderfully made in the image of God almighty. Nothing surprises him, him the one that numbers the hairs on my head. Him the Great I AM, Him the author and perfector of my faith. I look up to the hills from where my help comes from, for he is with me, carrying me every step of the way that I cannot carry myself. God's will be done.
I think more and more about my husband, daughter and cats. What would their lives be like if I didn't come back. Would they be better off? My grandma once told me about her husband dyings and this is her statement " you never get over it, but someday you learn to live with it". I feel that way about pancreatitis, the person I was died along time ago. The desires the dreams the ideas, the everything is based apon the actions of one diseased organ. If you let it; it will take everything from you. It is a day to day fight sometimes hour by hour or minute by minute. I know that the days of this organ dictating my life are short. Soon it will be out and then life will go on, the way it was suppose to be. Then the things that I had once taken forgranted will become important again, hopefully. I don't want to even think if this surgery is a failure, if it is then I have done everything humanly possible to have rid myself from the monster inside me. I am ready for life to begin again. For some purpose other than maintain pain control. There has to be life away from pancreatitis, there just has to be.

2006-07-14T10:39:00.000-04:00

July 14, 2006

Not much going on around here. I have been up since before 5am the usual. Wake up in pain, and try to get it controlled. At least now I have my medication. I was due to have the j-tube changed next week which I thought was a waste of money. So I talked with the radiologist that put it in and he agreed. So the j-tube will stay until surgery. Dr. Sutherland I believe said they would put a different tube in. He said I will have trouble eatting in the beginning so we should probably keep one in there.
I think I am going to sew today. There is only so much one can do at home, and besides there are 2 other adults here. They can do dishes also. I love to sew, usually never feel like it and it takes more than half an hour or an hour to get anything accomplished. I just get my feet wet with an hour and then I get upset. When you don't sew frequently you forget how the machine works and by the time you re orient your self it is time to close up shop.
Once I have recouped from my surgery, I have been thinking about vocational rehab. I hate being at home. I don't know that nursing is in my future, only God know's that one. I will want to return to work, I know that for sure. I liked working, it does something to and for the mind to be productive, or at least feel we are being productive. Sickness and illness occur, but I am not to thrilled about being a Social Security reciever my whole life. I have worked, so feel that I was eligible, but when or if I can return to work I most definitely will work. I need that sense of accomplishment.
Pancreatitis, shows it's ulgy head at the most aweful times. Stress makes it worse, and it has been a stressful week. I do have some good news a friend I met from a board had her tp/ict and was in and out of the hospital in 9 days including discharge day. I think that is pretty awesome.
I am being to have fear of the unknown, but I know I have no choice. I am an only child, and invert in times of stress. I am unique, I can entertain myself and am happy with that. I do realize that the closer the time gets the less I have to say to people. Just me, I am a strange one. I just want it done and over. My birthday is August 3 and I will be 40 this year. I have tried not to celebrate a birthday for a long time, mostly I was just plainly too sick and didn't care. It was just another day of misery. I have birth defects of the pancreas, so for me it was like ok lets celebrate everything that went wrong, somewhere during fetal developement.
It will soon be time to celebrate life without thumpy (our name for my pancreas) my husband can actually put his hand on my abdomen and feel it move. He is a surgical nurse and no it is not the bowel moving, it is the pancreas, it feels like it is trying to push it's way out. Yes, I have thoughts of the "Alien" movie many times. I think next year instead of birthdays we will celebrate my surgical anniversary or liberation day for me.
Still no word for our local newspaper, I didn't think they would pick up the story. I said I am nobody important in this town. That is what is all about, if my family were rich and had donated money to some city event or to the latest cause in town then it would be plastered everywhere. So those people in Richmond, that have pancreatitis will never know that there is a place that can help them. Well off to sew.

2006-07-12T15:26:00.000-04:00

July 12, 2006

What a week. My male cat was neutered on Monday. When brought him home (the love of his life, his sister cat) hated him. She wanted to KILL him. They say it has to do with the smell of the vet and it brings back bad memories of being in the pound. I have spent Monday and Tuesday attempting to keep them apart. I got up today and all is well. Thank YOU LORD!! This was absolutely breaking my heart. She would try to beat him up and he would just look real sad at her " what did I do?"" I am sorry" I have pictures of them laying on the back of the couch together so intertwined you can't tell who is who. The thought of them not loving each other was more than I could stand. Apart from our family the only thing they know is each other; as they were cage mates at the pound. But now all is well with the " Atwell's" When the children are happy, mama is happy.
I did some much needed cleaning today, of course I had alot of feline help. It makes things take much longer, but they are an eager bunch to stay right beside mom and learn EVERYTHING!!!!
Pancreatitis, yes, it is still there. I have less than 1 month now before surgery. My mother called our local newspaper to tell them about this and of course I have heard nothing. Probably never will. I am nobody, my family isn't rich, we don't have a prestigious name so it will go know where. Sorry about this color, it is hard to see. At least the grey day is over.
Pain med issues AGAIN. I called for a refill, which isn't the problem. I get my RX's through my husband's work. They know that around every 15-18 days I will need a refill, of course they didn't have enough in the vault. I have to wait until Thursday when the shipment comes in. Oh, I could take the 31 they have and forfeit the rest of the 60. The hateful lady tells me " but you will not get it split up" In my heart of hearts I just wanted to say " did I ask you to split it up?' Some times I want to say " what license do you have?" I know she doesn't she is a pharmacy tech. Then when I come off with the medical lingo and jargon, she realize's oh, no she must be a nurse. I did tell her " if I decide to take the 31 you have and forfeit the other, you will write a letter to my Dr. telling him that you didn't have the rest available and that I DID NOT RECIEVE IT!" Who would be stupid enough to sell the only thing that keeps them from committing the unthinkable, not me. As with everything with pancreatitis, they don't get it either. There is one lady that works in pharmacy there that if looks could kill I would already be dead, she has her preconcieved idea of what I am or what she thinks I am and nothing is going to change that one. Once I went to get an RX and she looked at me, and said something smart. I told her my husband is an employee here and this is where I get my RX's filled. She said " it will be about an hour" I said" fine I will go to the gift shop and look around and I need some tube feeding supplies" I will be back. I just want to tell her" look the Dr. wrote the script I haven't altered it, if you want to call, call he will tell you to fill it" I have had problems with this place as they don't understand why I need pain medication. It just couldn't possibly hurt this bad. There are some there that are alright and will try and help with ordering the tube feeding solution. There have been times where I have wanted to say " are you trying to imply something, don't imply just come right out and say it" I have discussed these issues with my pcp and I have told him, this is a benefit that my husband has, and I am going to use it.
Nobody here wants to talk about surgery, everybody is busy with there own life. Work, school whatever, it is all consuming to them. I don't think that anyone has even considered that I might not come back. I am not saying there will be a problem, but who knows. I think I will cover my butt and get a durable power of attorney for health care decisions. The last thing I want is to end up in some persistant vegitative state hooked to a ventilator. If there is no hope, then turn it off. Sorry but the organs ( what are left of them) are probably destroyed from way too much pain medication. Probably wouldn't hurt to have a will made out either, will keep the arguing to a minimum. I plan on coming home believe that, but I also am a planner by nature. Why else would I have 5 extra bottles of dish liquid in the garage. I think alot of my hoarding comes from being sick and not being physically able to go get what I might need. So the basics of life ( the everyday stuff) is here in bulk.
The cooking food and freezing it is coming along. I just fix a little extra and then what is not eatten it goes in a freezer bag and labeled what it is and the date it was fixed. Should work just fine.
I have been putting more thought into what it will be like having to carry a glucometer and insulin and syringes. I always kept a RX from the box with me just encase I would get pulled over so that I have a prescription on me that explains why I carry narcotics. Now I will need that for the other. If it takes the pain away I will carry cases if need be. Well my shoulder is hurting referred pain from pancreas ( thumpy).
The previous picture was taken when I was about 22 my daughter was about 4-5, How the time goes bye. Notice she is holding on the pool for dear life, now she is a fish when it comes to swimming and ready to turn 22.

2006-07-10T09:27:00.000-04:00

July 10,2006
I guess I am in what we call full blown pancreatitis. I have not been dressed since Friday, yes same night gown I put on Friday night. I think I did manage to brush my hair once. I wonder if people come across this and think yeah right, nobody can be this sick. Well I am here to tell you that those of us with pancreatitis, get this sick and we can get sicker than this.
I was suppose to have my male kitten at the vet between 7-8 am today for his neutering. What kind of people make these appointments. I am just going back to sleep at 5 am after being up most of the night. I am never out of bed before 8:45 am. Never. Call me lazy today I really don't care. I am not a lazy person, I get most all of the groceries that come in here, put them up and cook them and by the way I don't eat them ( I have a tube feeding) I do all the laundry that is done around here, wash just about every dish, iron clothes, sweep floors the only thing I can't do is mop or scrub the tub. The repeative motion causes too much pain. I have a lady that mops for me once a month. I usually take a wet cloth and kick it around the kitchen to clean up spills, and that is the truth I use my foot to push it around in the corners and then in the middle of the kitchen. Would it hurt anyone around here to mop, no , but then I know better than to ask.
My daughter Ashley saved the day by getting the kitten to the vet, thank you LORD. He is becoming man cat around here. Yesterday I found a bite mark on my lady cat from where he has been being mean to her. Without those testicles he will calm himself down a whole lot. I looked at him last night those sweet little ( devilish eyes, he is a stinker) and thought I can't do it too him, it will hurt him to bad. These cats at times are the only thing I have to talk too,.I spend so much time alone, with my husband and daughter at work and then both go to school also. I guess I didn't get them from the shelter to be mean to them I got them because everyone else wanted them. I knew I couldn't handle 2 cats, but with the death of our other cat. My family wanted more cats, you guessed it, I feed them, clean their litter boxes, do just about everything for them. The last picture I posted was of my Sheba she has gone to be with Jesus now, but she is far from forgotten. I miss her terribly, she was me in cat form. We had the same personalities, she was so sick. She had triaditis, inflammation of the pancreas, liver and biliary tree, which is a precursor to cancer. She was too sick to continue to live, so I did the thing that cat owner's who love their pets do. I stayed with her while she was put to sleep. There are times I wish that was available for us, it was ever so peaceful.
I have been to sick for too long this time and am becoming quite cynical. There have been times in my life, where I have sat and pondered what did I do to deserve this. I have even said that I was sorry for what ever I did that caused this to happen. I once had the idea that it had to be a punishement for some grave Sin I committed.
Church, is another touchy subject to me now. A few years back they would call me and ask me to fix meals for people that had experienced a death in their family. A birth of a child you name it they call. I started missing church alot this spring ( because of pancreatitis) I get these letters in the mail from our Pastor that say " when your not here your presence is missed" so I make myself go the next Sunday sitting in a pew crying because my back hurts so bad and then the Pastor wasn't there ( he was preaching somewhere else). He knew when he sent me that letter he wasn't going to be there. I don't get it. There have been many times they have repeatedly asked me about pancreatitis. I have had multiple procedures in the last year and been to many different Drs. out of town. We have never recieved one meal ( remember I don't eat). They know that I have pancreatitis, I told myself the last Sunday I went this is the last time, I will not sit in these pews crying in pain. God ( Jesus) knows that I am sick and he understands. I have heard offer it up as a sacrifice of Praise to him. Believe this getting out of bed on Sunday at 8am is sacrifice enough, let alone sit there in misery. It is very obvious to the reader I am grouchy, I am in pain, and I have had about ALL that is humanly possible in the form of pancreatitis.
This disease is more than a disease of the organs in our gut. It makes us hateful from pain, it takes every ounce of enery that we have. There is no life away from it, everything is based apon do I have enough pain medication, do I have enough tube feeding supplies. What do I do if I get to the store and can't finish my shopping. What if I wrecked my car, would they say I am under the influence because I have the intrathecal pump and had pain meds this morning. Would the insurance actually pay a claim if I had one. These are things that people with normal lives don't think about. Yea, the insurance carrier knows I have the pump, but I am not stupid enough to ask should I be driving? Don't get the idea that I sit around " stoned" all the time, it doesn't work that way. I am lucky, if I get relief from the sledge hammer pounding into my back, and the red hot poker or dagger that feels as though it is slowly being pushed into my rt rib area.
I keep hoping that the next day will be better, I have done this now for 10 years. There is of course acute exacerbations of the disease process that make it more painful, as if the daily pain weren't enough.
Someone asked me the other day if this was a release for me, because reading it was a release for them. I haven't figured that out yet. Somedays it seems like one more task to do, other days not so bad.
I have avoided having my picture taken for years, so that if I died my family wouldn't have to relive any of this, so there aren't alot of pictures of me. I regret that one, take pictures, illness is apart of life, just as birth is. Don't let pancreatitis get in your way of life anymore than it already does or had. I will check my archives and see what I can find.

2006-07-09T17:34:00.000-04:00

July 9, 2006

I picked gray as my color for the day. I haven't felt well for a few days now. The afternoons get better, but the nights and the mornings well they just truly suck. I am tired of hearing myself yell. I wake up to the sounds of my own painful moaning, and then realize it is me. The pain, Oh, does it ever end. I had taken break thru pain medication 3 times by 12N today. It started at 3am as usual; take my medication and lay there with the TV on waiting for it to work. I think that once I hook up the tube feeding it makes it worse. Dr. Sutherland did tell me he had never seen a tube feeding stop the pain. He said it was like eatting, sure seems like it to me. I know that I can't eat enough to sustain myself. At least my finger nails are growing again, and the little stubs of hair that had broken off are about 2 inches long. That's about the most postive thing I can say for thousands of dollars of tube feedings including the insertion and the rental cost of the pump and pole.
I made hotel reservations for my husband yesterday. I looked at the calendar today and in a month I will be in Minnesota. I am ready for thumpy ( what we call my pancreas) to be out. I wish they could have made the date a little sooner. We live to learn to be more patient. Not our time, but God's time. I haven't been the Godly little trooper I should be, I almost fell down our basement stairs the other day, and said some pretty foul stuff. It really scared me though. I am getting irritated at the smallest things. I don't know if it is the pain, lack of nicotine or just nerves. The smoking thing isn't going the greatest either. One thing is I am starving, I can't eat anything, can't drink anything, so what the heck am I suppose to do. I broke out this old pillow case I was hand embroidering for something to do with my hands. It is so ever blasted ulgy, why did I pick butterflies with sunflowers? Who knows, must have been popular 5 years ago when I started it.
I have a friend that has the tp/ict on Monday, she called today in great spirits. Actually best yet. I am happy for her. This just isn't a life that anyone should have. I don't want pity or people to feel sorry for me. I just sometimes wish that people would acknowlegdge there is a problem. A real problem. I don't want to hear, we are believing that God will heal you. Has it happened yet, NO! No I have to have just about internal organ I have left remove with the exception of my heart and lungs. I guess they don't know what to say. Let me start with a hint, the worst thing to say to someone that is sick is this " Well gee you don't look sick" or Wow you look really good today. One that makes us think the last time you saw us we looked terrible. The gee you don't look sick makes me instantly think " they don't believe it". I have never been one to hold my tongue. I am a straight forward ace in the hole. Tell you like it is, try to keep from hurting your feelings; but if you ask me if I like the outfit you have on and I don't I will tell you truthfully " No I don't like it". It is the same with gift giving. I stopped that many years ago. Now I go buy what I want and hand it to the person and say " Thanks you bought this for me for my birthday" I don't care if I get the money back. There is only one way to make sure you get what you want buy it yourself. So much for my grey day, thank you Lord it is almost 6 pm it is almost over. It will begin again promptly around 3 am that I know for sure. Thumpy your days are numbered, soon it will be your hours are number. Dear pancreas I promise this, you will be laying on a table and then stuck in a solution to dissolve the only good thing about you and the rest I hope they burn. If I didn't need what you held so near and dear I would personally ask for you to stomp on you. Enough said.

2006-07-07T22:19:00.000-04:00

July 7,06

I haven't posted in a couple of days. My husband put the picture of our kitties ( children) on the site for me. I am not real computer literate and I was having some problems with the site 2 days ago. Probably more user error than site error.
I have been having alot more pain the past couple of days. Of course the busiest days this week for things that need to done outside the house. I have decided to attempt to make ahead meals for my family and freeze them as individual meals. Time will tell if I have the strength to do this. I have given it alot of thought and think that if I cook one extra thing with supper then I will get it done. I would prefer that they have good meals while I am away and while I am recouperating at home. I have also considered just making extras of what I would cook for supper and freezing that. I am a homemaker by heart, true to the core. I have not one masculine bone in my body. I am a girlie girl to the core.
I have been giving more thought to the idea of insulin dependant diabetes, which I have been told by Dr. Sutherland will more than likely be the case. So, thus I am attempting to stop smoking. Now I wish I have never started, but then who lets a 12 year old smoke? Oh, well that's the past and we go forward. If it keeps me from loosing limbs then it must be done. I did go to get a cigarette the other day and my husband had taken tape and written things like, blindness, toe amputations, kidney failure and stuck it to each pack in the carton. Really makes one think when they reach for one.
I am being to have apprehension regarding the surgery. I will go through with it, it does not mean that I cannot be afraid. I do know that God's hand is in this so it will be alright.
We are beginning here to talk about hotel arrangements for my husband and is driving from Indiana to Minnesota so frequently. He is in BSN school and cannot miss more than one day of school so he will have to return. He is enrolled at Indiana Wesleyan University, this is an intensive 18 month program for previous RN's with families. It meets one night a week and there is so much homework. Mostly papers to write, that man can write a paper. His papers usually end up being at least 20 pages ( easy). I feel bad that he will have to travel so much, and he will have to work on his papers while I am hospitalized. I wish there was a way this could wait until his school was over. I asked him if he wanted me to put this off. He wants for me to be well and have a better quality of life, so thus we proceed forward. That is life if we don't move forward then we are moving backward. The thing about moving backward is that we accomplish nothing. I look at the things in life that I have been given the opportunity to accomplish and I am very grateful. Pancreatitis has kept me from meeting alot of goals that I had set for myself. I think that sometimes things happen so that we don't let the goals of life interfer with what God has planned for us. Sometimes what we plan and what God has planned for us are two different things. Issues are a way of getting back on track for Gods plan. I don't have any word of wisdom about pancreatitis. I know the clincal aspects, I know what the pain feel s like, I know that I dispise it. I only know that I have to try and if this surgery doesn't help then I have done all I can. I have also reduced my pancreatic cancer risk. I try and look at the postives in life. I will close with a picture of my daughter; Ashley. I will mention more about her later

2006-07-06T14:05:00.000-04:00

Here are our two cats. They are such a joy to watch.

2006-07-05T11:28:00.002-04:00

July 5,2006

I have decided to add the date to each entry so it will be easier to identify.
I spent most of my night awake, in pain, or some degree of discomfort. I usually wake up about 3am and stay awake until about 5-6am. Then take over the rest of the bed after my husband leaves for work and sleep until 9am. It is amazing to me the amount of sleep this disease requires. I am usually in bed by 10:30 and dozing until the pain kicks in. Thank God for Court TV, I am addicted to it. I am a "mystery solving" lady at heart. It started with Nancy Drew books as a young girl, in most movies I can pick the villian in the first 15 minutes max.
Back to the reason I started this. The dreaded pancreatitis, I have met so many amazing people with this disease. As with most diseases it knows no cultural, no gender, socioeconomic boundries. I have met people who have lost about everything they own to pancreatitis. People who would willing work if they could, and find they have to depend on the government for assistance that they have to fight to get. This is wrong, if the technology is available it should be available to all. When I first go sick I had the thought process that if only famous people would get involved and bring this out in to the light. Maybe there would be more funding to find a cure or better treatment options. I wrote many famous people (some that had come out with their own personal health care crisis') to no avail. Our own Vice President had pancreatitis a few years back, from what I believed to be a stone lodged in his common bile duct. It was reported and then dropped.
I never thought that I would live long enough to have this impending tp/ict. The hospitalization through out the years have been many and long. I finally quit going and asked for home care, which was a joke. The nurses were so lazy they didn't even want to try and start an IV. I called an old friend from my days of nursing ( She is turly the one stick wonder) and got it the first try. The home care agency begged me to tell them who started it, are they crazy, she did me a favor all they wanted to do was schedule me for a surgical procedure I didn't want. I wasn't telling anyone.
The hospitalizations have been mainly for low potassium, and magnesium. These are the problems I have had from pancreatitis: the EKG report as two infarcts ( heart attacks) seizures, hypothryodism, urinary retention requiring me to cath myself. Steatorrhea to the point of near renal failure. A few admissions for pain control. I don't think that Drs. are ever prepared for people with pancreatitis. Mainly supportive care, rehydration and pain meds. Replacement therapy of the missing electrolyte and time. I will post another day on treatments for pancreatitis.
I wanted to mention today my other support system. My husband has already been talked about earlier. I have a daughter who is learning to help, she will be 22 soon, where does the time go. I have 2 cats that recently become members of our family. We had an untimely death in April of our beloved cat of 15 plus years. It just wasn't home without the pitter patter of feline feet. Now we have 2, a girl cat named Dora Anne ( after Dora the explorer) long story. A boy named Keliahila (after a super kitty my daugher and her boyfriend watch on the cartoon network). Our Pastor has a daugher named Keliah and I always thought it was such a pretty name thus the cats name. I will put pictures in for everyone to see my children.
I also have to mention my grandmother Thelma Russell who from the year 2000 to 2002 did everything that needed to be done at my home. My husband was in RN school and I was bedfast. I was in bed about 20 hours a day. She is now 85, you can do the math, she is my inspiration. I have always loved her so much, she is like a mother to me ( in my house she is called mamaw) I hope to carry on the tradition some day when I am a grandmother myself.
The surgery, the surgery, it is a scarey thought. No one told me I had to have it. I found out about it myself. Printed out the information from the net and took it to the Dr. and asked to be sent to a certain hospital ( I won't name the place) did their battery of tests ( or their multi thousand dollar test). We made 4 trips total, after they told me they couldn't find my pancreas problems we left. 2 weeks later I got a call that said" the radiologist has reviewed your last ERCP from IU Med and you do have an annular pancreas, pancreatic divisum and SOD, and no minor papilla, the Dr. wants you to have a whipple surgery."
I asked modified or radical ( once a nurse always a nurse) her reply " I don't know he handed me your chart with a post it note stuck to it and said call her" What a joke, we went back to talk with them and they wanted to leave the most diseased part of my pancreas in. I finally realized what they were doing. Do this surgery even if it won't help and then we can do the tp/ict that would really make them alot of money. Plus they had no plan B for surigical complication, the tp/ict needs to have the University of Wisconsin solution available for islet isolation, it would not have been there, God only knows what kind of mess I would have been in. People take note " when your gut feeling says walk, walk don't look back there are some not so nice people in health care" I was always taught patient care comes before anything, not anymore health care is a business and the people at the top look only at the final dollar. It is not about the patient anymore it is about the profitablity, even for non- for profit hospitals. I am long winded and have alot to say, this is my passion. I want so to return to nursing, God's will be done. I think God knew that I would need this knowledge for when to say enough is enough. I don't know what I would have done without all of the knowledge I have learned over the years as a nurse. I probably would have had alot of things done that were definitely not necessary. Life is what you make it, you take every day one day at a time. Some days are an hour at a time, you push forward, keep going, one step equals two and then three. Before you know it you have completed your task, there is always another task awaiting but that is life. I am not afraid to die, I would however prefer to stay here with my family. I would gladly trade this life for a life with Jesus. But that is his say, when he calls me home believe me when I say this but once in his wonderful glorious presence I will want to stay with him. I would probably say " Love you all, I will be waiting for you, but I don't want to come back now". God's love is extravagant!

2006-07-04T19:11:00.000-04:00

I made this pair of pants. I hate trying to buy clothes, nothing ever fits. My abdomen is larger than the rest of me. Making it hard to find clothes that fit in the belly. Uusually purchased clothes are huge in the hips or rear if they fit around me.You can see my dressing for my j-tube, I had worked on these for about an hour, you can see that I am very tired. The tail on the back is the elastic that I had inserted, I had my husband take a picture so I could get a good look at how they fit and to see what they really looked like on me. I love to sew, and do crafty type things. My illness takes alot out of me, and I don't usually feel like doing anything. If I get done what needs to be done for my family I am doing well. The pants were too big, I have still never finished them. Oh, well at least I tried. It is terribly difficult to get up and down the basement stairs with the tube feeding. I have to take it off the pole and carry the bottle and then put it on another pole and keep it plugged in, the battery doesn't work very well.

2006-07-04T18:56:00.000-04:00

Here is a picture of my husband and me taken in 2005.

2006-07-04T18:28:00.000-04:00

I have suffered from pancreatitis for 10 years now. I have been through a medical nightmare. I was born with a lot of birth defects of my pancreas. Annular pancreas, pancreatic divisum, sphinter of oddi disfunction, and no minor papilla. These are what we know currently. I have been scheduled at the University of Minnesota to undergo what is known as a total pancreatectomy with an islet cell transplant. The pancreas is removed and the insulin and glucagon making cells are isolated and harvested, the duodenum and spleen are removed. The pancreas is placed into University of Wisconsin solution to digest the organ and release the islet cells and then they are infused on to the liver and the portal vein. I have read that sometimes heparin is used, apparently this helps the islets to settle in.
I am scheduled for surgery August 11, 2006. This surgery would not be possible without the help of my God Jesus Christ my King. And of course a very supportive spouse Michael Atwell. This man has stood beside me, when most would have probably walked away. We met and fell in love, and he knew from the very beginning that I was sick. He never waivered in his commitment to me, or my disease process. There have been many times Drs. have not believed me, and when the final diagnosis was given, he said " I have never doubted you once, I knew you had pancreatitis. I dedicate this blog to my husband, lover, friend to you Michael Atwell. I truly believe that God put us together. Without you I would have never lived this long. I wake up everyday and push forward for you, you are the reason I keep going. I will try and make a daily post as to what it is like to have chronic pancreatitis, what it is that we go through, the good the bad and the ugly. If you happened here because you googled pancreatitis I can lead you to more board sites that will be mentioned at another time, as I will need their permission to list.
Pancreatitis, is medically known as inflammation of the pancreas. Most consider it a disease of alcohol abuse. I for one am not an alcoholic and have never been. As I stated earlier I was born with defects of the pancreas, for what reason, only God himself knows. But for those of us out there I will say that "I am fearfully and wonderfully made" and that" I am made in the image of God Almighty" by his own wonderful hand. God makes no mistakes. Please sit back with a cup of coffee and begin to read my life, it will be a "good read". I will show you that with perseverance and a lot of help from God that those of us with this disease can and will do what ever it takes to live a normal existence. There are a lot of hardships along the way. Governmental assistance such as SSD which takes too long to get and is a horrible fight. Attempting to find a pain management Dr. or any Dr. that has any clue about pancreatitis can be a nightmare in it's self. Drs. who only want to make more money by doing procedures that have little to no postive effect. Being deemed a drug seeker or addicted to medication, that I need to keep myself as comfortable as possible. The pain never goes away, it only becomes tolerable with enough medication. I have an implanted intrathecal pump (pain pump) which has helped a lot, but it does not stop the damage that is being done on a daily basis, by an organ attempting to digest food, which is in reality only digesting itself. I have a tube inserted into my small bowel for nutrition that is called a J-tube. I eat no food as food is too painful, it stimulates the pancreas to digest the food and the cycle of pancreatic digestion starts again. I wake up most days unable to walk until I have taken pain medication. Some days I wake up to the sound of my own voice screaming from pain. Some times I wake up to my husband saying "Baby open your mouth your crying in your sleep" attempting to put pain medication in my mouth. This is a disease I would not wish on anyone. I personally believe that sometimes we as people become so obsessed with things of the world that we have to go through some trying times so that when those times are over we will truly understand how sweet the taste of life can really be. I will close with this, it is true what doesn't kill you does make you stronger.