Successful Pancreatic Transplant

[allisa]

Morning all.....

I was up late last night looking around at the JDRF site and came across the PROMISE TO REMEMBER ME campaign.....it encourages children and families to contact local senators and representatives to keep Diabetes research and funding a priority.

So at 1 AM I e-mailed our local rep....and by 9:30 AM I had recieved a phone call to set up a time !! Can you believe that !

ANyways.....the man who called me (the reps asst.) told me that Diabetes was VERY important to him personally because he was a FORMER diabetic...I figured he was Type 2 that got his diabetes under control.....no.....he has had Type 1 for about 35 years and 2 years ago underwent kidney & pancreas transplant in Baltimore !!

I was MUCH more excited by THAT news than hearing that the rep would like to meet with Ty.....we talked for quite a while....and it was just so hopeful to know that there are answers coming !

He mentioned success that some researches have of implanting islet cells into healthy kidneys and they produce more islet cells within the kidneys.....

So anyways.....Ty is trying to tackle a few reps in this area for the REMEMBER ME campaign and this first one left us feeling quite hopeful !!

[Chase's mom]

WOW I'm so excited to hear this. My son just last night was talking about how he hopes by the time he gets older that there would be some kinds cure. Kudos to you!!!! For stepping up.:D :D

[Tracy B.]

I have heard about the pancrease transplant about a year ago. My husband was reading the USA today and there was a man that had type 1 and was tired of picking his fingers. He chacked into the transplant and everything was successful and he no longer has diabetes. I wonder how long the waiting list is for that?

[EmmasMom]

You can typically only have a pancreatic transplant if you are already getting another organ, (usually a kidney due to renal failure). The reason is all organ transplants require life long immune system repression with medication that has terrible side effects. It wouldn't make sense to trade insulin injections for 75 pills a day to prevent your immune system from attacking the new organ.
The research with Islet cells alone being transplanted is very promising, however. If they can just find a way to stop the auto-immune process that kills them in the first place... :rolleyes: We've spent time with a new researcher at our med school that is working on this very problem. Fascinating Stuff!!!

[allisa]

Amy, I'm not sure a trade off of immunesuppression medications is any worse than the protocol our children are now under on a daily.....hourly basis.

I sure would rather give my son insulin in a pill form than in an injection. I have NO clue about immune suppression medication.....but if you poll every person who has a successful transplant...I'm sure the overwhelming majority would think it is worth it.

This gentleman I spoke with DID have the double transplant that you spoke of....but when I researched it online.....there were some successful transplants that were pancreas only....and some that were from LIVE donors.....ie.....just a PORTION of a donated pancreas were transplanted.....thus opening a possibilty of a family member donating !!

I really want to be hopeful about the cure coming one day.....

And I truly do believe that the JDRF is doing an AMAZING job bringing Type 1 to the general public and educating about the difference in the 2 diabetes.

[EmmasMom]

I agree completely that research about "grafting" portions of a pancreas, or individual cells is exciting. I hope that someday it works well long term, is safe and widely available. I have four type 1's in my family and if any of them could be cured it would be amazing. I would do anything to cure my daughter, as long as I knew the benefits outweighed the risks.

I just don't want new parents here, or people reading through these posts to think they can put their child on a waiting list for a new pancreas, or that it would fix everything. It's much, much more complicated than that, and whole organ transplant is done only as a last resort.
I don't know of any doctor who is willing to try even an Islet cell transplant on a child at this time. As far as I know you must be at least 18 to participate in this research.

We are all hopeful that our children will be cured... and I believe that they will be.:cwds:

[jeep_bluetj]

I'm not sure a trade off of immunesuppression medications is any worse than the protocol our children are now under on a daily.....hourly basis.


I can speak a bit to this.

My sister (Type 1 diagnosed a 9, now 44) has a transplanted pancreas and kidney. She had the transplants done about 2 years ago. She was on dialysis for about 2 years before the transplants. Pretty much had the textbook long-term complications from type 1. (She had poor control for most of her life, I'd guess a1c's of scary levels when she was young, before BG meters were invented.)

She's much healither with the new organs - the kidney was badly needed. BUT, the immunesuppressants make her miserable. She has stated she would rather have had good control than the transplant.

So we try very hard to keep very good control with my son. If it takes 10-30 more years for a cure, I want to be able to keep him heathy until then.

[cydnimom]

I just wanted to say too that my best friend had an islet transplant 2 yrs ago. It didn't work completely - she still takes small amounts of insulin daily. It has helped her A1c come into a normal range - 5.6. The only reason she had the transplant was because she had no hypo awareness or very little. The transplant has helped in that regard.

The bad thing is the immunosuppressing drugs and she has said that she wished that she would not have done this at all that she would have pursued some other way. Now they have the CGMS, which I believe may have helped in her situation to some degree. She is sick most of the time and her quality of life has gone downhill. She is a guinea pig in my eyes and her eyes. They do "inform" you of the side effects of these drugs but I think because they are so excited about finding another willing participant that they don't stress them enough.

Don't get me wrong - we do need willing participants to help in research and I wholely support the JDRF - they are wonderful in many ways! They do spread their money around to many different areas of research as well.

I, however, wouldn't recommend a transplant to anyone unless your life depended on it - as in the case of a double transplant of kidney/pancreas and such.

Just my 2 cents.

[Jana]

From a former Thread:

Transplants (of any kind) are most often used as a last resort...when a patient will not live without the transplant. Immunosuppressant drugs (anti-regection) can be pretty nasty. Some of the side effects include:

High blood pressure

Kidney & liver problems

Increased chance of infection (after all...immunosuppressants suppress a person's immune system). Pheumonia is a big problem.

Difficulty treating infections in a person

Increased chance of uncontrolled bleeding

Inability to receive immunizations (such as smallpox and flu) because a person's low resistance to infection can cause them to actually get the illness/disease the vacination was supposed to prevent.

React with many other medications...increasing chances of side effects...making other medications useless...etc...

Shortened life expectancy

Transplants are not optimal for children (such as Type 1 kids) that CAN live a full life without them. Insulin treatment isn't perfect, but a person can live a long, healthy, happy life on it...with less side effects than immunosuppressents can bring on. Besides, transplants aren't exactly elective surgeries.

AND...most transplanted organs do not have a particularly long "shelf live". They give out and need to be replaced.