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

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

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.

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.

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

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