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.

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.

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

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.

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.

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.

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.

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...

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.

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.

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.

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.

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

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.

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

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.

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.

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.

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.

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

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.

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.

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.

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.