I am in the process of geting my name on a transplant list for an pancreas only. My insurance has ok it. Can any one help with the fear and excitement.
I am in good health have had d for 33 Years have been looking for a cure for the last 10.Has any one had this done, not sure if this will make things better or just different.
David, this lady had an islet cell transplant http://kathy-mynewislets.blogspot.com/2012_07_01_archive.html. She is very nice and I'm sure would be happy to answer any questions.
My daughter has had 23 years of a diabetes-free life due to a transplant when they were experimental. She had hers at U Wisconsin, Madison.
The whole process has been well improved since then, and you will find you'll be taking a bunch of anti-rejection drugs and having pre-transplant anti-rejection infusions that have reduced the likelihood of rejection many times over.
Yes, she says she likes the diabetes-free life! She is an athletic person who has worked ever since, age 52 now.
Best wishes and keep us informed about how you like it.
Those who have had transplants don't get back on here much because they are suddenly free of diabetes, but you will be having a process that others on here would be interested in.
I had one back in the early 90's...................didn't work but for 2 years for me and the D came back but I have heard & know other's who has had a better time of it. And PLEASE remember this was when it was HIGHLY EXPERMENTAL. GOOD LUCK!!
If you are in the process of being listed on the UNOS waiting list they will explain everything during orientation. The side effects of a pancreas transplant can be significant, so a pancreas transplant is typically reserved for those who have serious diabetes complications. A pancreas transplant is often done in conjunction with a kidney transplant.
You will take anti rejection drugs for the rest of your life and the side effects are deadly in the long run, but if your facing death it maybe the only option. You can also receive a organ that has cancer or some other issue that is missed during the organ screening proses. If your Kidneys are damaged from diabetes then the drugs will finish them off at some point.
If your in good health I'm not sure why they would put you on the UNOS waiting list.
thank you for the good word
i am in good health i test 12 to 15 times a day can not tell if i am 30 or 300 that is why i am on the list. i have read all the info from them. just wanted to hear the real word from friends an people i trust.The universitie i am talking with did 746 pancreas only transplants last year that is more them 2 a day.
I have done my home work just wanted to talk to people who have been there .Thank you for your input.
Would you do it again
There are only 2 reasons they do a pancreas transplant. Kidney failure or severe hypoglycemic unawareness. So you do fit the bill. I had my kidney transplant in 2002 and in 2008 I went ahead and had the pancreas done (I figured I was immunosuppressed already). The drugs are not as scary once you are on them as they sound on paper. I have minimal side effects - but I am not on prednisone so no bone issues. You do have a slightly higher risk of cancer with the drugs, but it's not huge and you need to be careful with wearing sunscreen. I have had mine for 4 1/2 years now. I was told the "average" life expectancy of a graft nowadays is about a decade. But I don't plan to be average - I plan to get much more life out of it.
You will find that your blood sugar will be incredibly stable. My last a1c was 4.9 despite a horrible diet (I have other stomach problems that leave me eating calorically dense and soft foods - so a lot of junk). My cholesterol improved significantly as well.
Feel free to ask lots of questions
Cora
To tell the truth? No I wouldn't. I told the drs that when the transplant failed and they wanted to put me back on the list for another. I told the drs I knew how to live as a diabetic but when I was in transplant things were so different and OMG those anti-rejection meds and all the other's I had to take Oh lets not forget the steroids thay gave me back then roo. But I hope that they now have an easier way to do things
I think you really have to consider the trade-offs. For me, T1d is a known entity and even with it, I am pretty healthy. I do have some mild hypo-unawareness, but nothing that I can't handle. Diabetes is time-consuming, expensive, and downright scary at times, but I know how to deal with it at this point in my life.
I did look into transplantation not long ago, more out of curiosity than anything. I decided that even if I was a candidate, I would not do it. The anti-rejection drugs have some pretty serious side effects, including (ironically), diabetes! In fact, I knew of someone who had a lung transplant and ended up being insulin dependent as a result of the anti-rejection medications. In addition, there's the risks associated with surgery and the very real possibility that the t1 diabetes could return (if you have antibodies, those antibodies may end up attacking your new pancreas as well).
I am kind of a "leave well enough" alone. I am able to keep myself alive, I feel great, and don't seem to have any limitations in my life because of T1D (in fact, I think being diabetic keeps me much healthier than I would be otherwise!)
BUT.....
You have to do what is right for you. If, in your case, having this transplant would make your life better, even taking into account the side effects of the drugs, then you should do it. We are all different and you need to do what will give you the greatest quality of life.
i am definitely interested in this too. but do not understand the side effects, what are they?
The anti rejection drugs cause kidney damage, high BP, cancer, Hyperglycemia and your immune system is shut down so you can catch anything.
You just put into words ervry thing going through my head.
Thank you for your honesty. I know we all want a cure . As hard as live is some time I know I am very lucky to be in as good a shap as i am .Thank you
Will keep you posted.
Those are all listed side effects, but are not common. And if they begin to happen, they will switch you to another drug. 8 years ago I began to get damage from one of my drugs on my transplanted kidney. They switched my meds and I have been fine ever since.
And please do not subscribe to the urban legend that your immune system is shut down. It is not - at all. I do not get sick any more than I did before the transplant. In fact I get sick less because now I use hand sanitizer when I touch things that many people handle (like grocery carts - yuck). In fact, last winter my husband had a horrible cold and even kissing him did not give it to me.
The increased incidence in skin cancer is only about 5%. So if you are careful with your sunscreen, the odds are in your favor.
Again, if your glucose goes up due to the prograf, they can change the med and often this gets reversed.
Cora
Thank you you all have been my life line for me to talk to .
May the sun light up your life every day .
Cora you rock I am going to keep moving forward
wishing you the best of luck! please let us know what happens, really interesting!
Congratulations on your 8 years post transplant. I'm only 14 days post transplant and can only hope a pray that I do as well as you have. Staying positive is important and I thank the Lord every day I get out of bead... It's precious.
The decision was simple for me I was diagnosed with Hepatic cellular carcinoma in February and was placed on the transplant list with B+ blood which is 9.4% of the US population. I had survived most of my adult life without any diabetes related complications and went from being a very healthy PWD to very terminal PWD after one MRI and one doctors visit.
I wonder if you'd do better with a diabetic alert dog and cgm to help manage your blood glucose levels?