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I have been type 1 Diabetic for 39 years. As a child my blood sugars were never contolled. But as an adult I have kept them pretty well. I am a nurse by trade but last year I started to get burning in my hands and a lot of pain in my feet and legs. I scheduled an appointment at University of Chicago. They ran a lot of tests and diagnosed me with severe neuropathy and a small amount of kidney damage.. I have had retinopathy since I was 10. In the last year my complications have rapidly gotten worse. I have had to quit working also. My doctors are suggesting a pancreas transplant. I am being screened next week. I feel like I dont really have a choice, with how rapidly the neuropathy is getting worse. Is there anyone out there who can tell me how the procedure was and how the antirejection drugs affect your life? I still have a child at home so I just need to be as healthy as I can. Thank you to anyone who can give me any insight about this.

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  • Wendy, I usually check in once a day or so. so keep me posted on how things go.

    Just to let you know, while my life is fairly normal right now, I do not consider myself well enough to work. Due to a series of other medical issues, I'm just not reliable enough, even on a part time basis. That said, I met and married a great guy between my transplants and we as a couple are doing well.

  • It's a tough decision to make. A pancreas along, an skpt (simultaneous kidney/pancreas tx) or having the panc and the kidney one after the other are all a big surgery. I am a PAK (pancreas after kidney) so I got my kidney from my cousin in 02 and my panc in 08. I was pretty much dying on dialysis when I got the kidney and was in much better health when under going the pancreas surgery 6 years later. But it was still a big op.

    I was told that the best I could hope for would be a stopping of the progression of my complications. What I found was that most of my neurological issues gradually cleared away. My gastroparesis got better (but not totally gone), my rapid heart rate decreased to closer to normal, and while I didn't have significant peripheral neuropathy, I do have much better feeling in my feet.

    As for the drugs, I was put back on prograf for the panc, but got off it as soon as I could. I my cousin's kidney didn't like it and so the prograf toxicity for the kidney was not a good thing. Although the 14 months on prograf didn't do any permanent damage. I also found the prograf made my gastroparesis much worse and I couldn't sleep. But keep in mind, once you are past the first year or 18 months, most drugs can be swapped for others that may work better for you.

    I am currently on rapamune (not a good drug for pancreas transplants, but it seems to be working for me). I don't have any side effects from it although many people get very high cholesterol and/or mouth sores.

    I am also on imuran, which doesn't give me any side effects except for a slightly lower WBC. But I use hand sanitizer with moderate frequency and so I don't get sick easily.

    I'm not on prednisone - yay!

    The first year after transplant is the toughest especially at the beginning. The constant labwork is never ending. The first month or more (depending on your center) you will be getting labs drawn 3 times per week. But it gradually tapers.

    The bottom line for me is that the procedure was a lot easier than the kidney as I was healthier. But standard post op rules apply. No lifting, etc. And I made the mistake of accepting a CMV positive organ and I was CMV netagive. I got massively sick so I would suggest you not do that. Don't be afraid to say "no" to an offered organ. It doesn't affect your list placement and if you have doubts about something they tell you about the donor, trust your gut and turn it down.

    Feel free to ask lots of questions.

    Oh, and my 9 year old pancreas just gave me an a1c of 4.9%

    • Thank you so much for replying Cora! They havent talked to me about any of the drugs yet as I am just going for my screening on tuesday. From what you have said it doesnt seem like the side effects are too bad. I am excited to hear that your neuropathy symptoms have nearly gone away. sometimes the burning in my feet is so bad I cant stand to put shoes on and I have recently had a few falls because sometimes my feet go totally numb. Where did you have your procedure done? What is a CMV positive organ? a1c of 4.9 sounds good too. How does that make you feel? Do you in general feel better?

      • Wendy, how you react to the drugs.....welll, the only way you're going to find out is when you start taking them. I used to react to everything, but not so much these very important drugs (thank goodness). On the plus side, there are a lot of different drugs that can be tried.

        I had my transplants at the U of Mn Fairview in Minneapolis (great place!)

        CMV (cyto megalo virus) is a common virus (kind of like herpes) that most people have had (typically flu-like symptoms for a day or so). But I was one of the rarer (about 15% of the population) that's never had it. So I got it from the panc and got very sick (although there were other things going on as well).

        The really beautiful thing about having the pancreas is how sensitive I am to bg changes. I never had problems with lows (always kept my awareness) but now if I'm lower than 4.5 (80) and 6 (108) I really feel it. I had a really 'bad' meal the other day with a lot of dessert and hit 7.2 (130) and it felt like I used to when my bg machine simply said "hi"

        It's just such a relief. You don't realize the burden of carb counting, testing, expecting the unexpected, etc and when all that work of consciously being your own pancreas goes away, it's very relaxing.

        As for the neuropathy, have you tried the DPN cocktail? (diabetic peripheral neuropathy) It's made up of vitamin C, ALA (alpha lipoic acid) and GLA (gamma linelenic acid). It takes some time, but it can help.

        Keep one thing in mind though. After quite a few years of stable retinopathy, mine has come back a bit (had a few lasers and a few injections). So there is no guaranteed stability. In the overall though, I can say that now that I'm out of the woods I would do it again (didn't feel that way the first 2 years or so).

        • I have tried the alpha lipooic acid for the neuropathy. It made me feel really sick. Im currently on 150mg of lyrica a day and have started taking norco at night. I dont like the way it makes me feel. I wake up feeling really groggy but it takes the edge of the pain away at night so that I am able to sleep. I do have some severe lows, 32 to 45. I cant really feel them anymore. That is scary. I always just check before I drive and usually wake up at least once a night to check because I am afraid I will bottom out. So are you able to maintain a normal lifestyle now? My life has changed so much in the last year when all of this started.  Can I talk to you again wednesday after my appointment with the transplant team? I am so glad to talk to you. I have a lot of support from my family, but its heartening to talk to someone who has felt the same physical symptoms as me.

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