Anyone else out there that's had a pancreatic transplant?

I was diagnosed with type 1 at the age of 43. I had very severe hypoglycemic reactions to insulin and got a new pancreas six years after diagnosis on June 17, 2008. I’m no longer diabetic and don’t take insulin or any other diabetes meds. My blood sugars are fabulous. I feel physically fantastic and I can go back to work. I also go to the gym daily to lift weights and use the treadmill. The only bad thing is all the meds I take-antirejection, antiviral, antibiotics, and several others. But I don’t have any side effects.If anyone is considering a transplant and has any questions I’d be happy to try to answer them.

Colleen Myers

Thanks for sharing your experience, Colleen! I am still friends with Deb Butterfield, who was a big advocate of pancreas transplantation (although her transplanted pancreas failed in late 2006 so she has been back on insulin while she is on the registry for a new pancreas). Anyway, I may have some additional questions, but where did you have your transplant done (e.g. which medical center and which surgeon)?

Hey Scott! I had my transplant surgery done at Indiana University Hospital in Indianapolis, IN. More pancreatic transplant surgeries are done there than at any other medical center in the country. My chief surgeon was
Dr. Jonathan Fridell. He is supposed to be the best pancreatic transplant surgeon in the country. He’s also the first surgeon to do a pancreas-liver transplant simultaneously. I have nothing to say but good things about IU.
I was hospitalized for 6 days after surgery and the nurses, physicians, everyone were wonderful. I am so glad I had it done because my quality of life is so much better. I absolutely loved my job as a drug rep and now I can go back to work. I work out and I feel I’m in better shape physically than alot of people my age. My husband, mother, family, and friends no longer have to worry that I may die from hypoglycemia while they’re at work since I did die once.It takes alot of stress off of them and me. The only downside is the followup and the drugs. When you first are discharged you have to return to see the surgeon twice a week and you have to be there from 8:30 AM to about 3PM. The reason you’re there so long is they have to wait for lab results to come back before you see the surgeon.But I’m down to every three months now. The drugs are just a pain in the ■■■ because there are so many pills to take. But I don’t have any side effects. I have free long distance. If you have questions and want me to call you just leave me a message and I’ll get to you… If you want to call me I’m at 260+492-2126. Thanks. Take care. Colleen

While I agree that, if successful, it would be a great change in lifestyle. I have even looked at the Islet Cell transplant Program as a possibility. BUT, aren’t you just trading a lifetime of insulin for a lifetime of more or different drugs? So what is the difference?

Hey George! The difference is that my antirejection drugs don’t lead to severe hypoglycemia. I died once and was hospitalized in a coma for one week in the ICU on a ventilator with a swollen brain. The neurologist on my case advised my husband to decide which institution he’d like me to go to because I would probably be permanently brain damaged upon awakening. The hypoglycemic effects of insulin were so severe that my husband, mother, family, and friends worried about me constantly. Also I feel a million times better physically since the transplant. I’ll finally be able to go back to work and my career as a pharmaceutical sales rep has always been very important to me. I have no side effects from the drugs post transplant. It’s just a hassle taking pills three times a day. I would recommend this surgery to anyone suffering from severe hypoglycemic reactions. It’s the smartest decision I ever made. Colleen

Hi Colleen,

I had a transplant, not a pancreas though. It was a liver transplant and I was so sick at the time that they could not wait for a pancreas. Anyway, I was just wondering when you had the transplant. Although we had different transplants, I know i started off with a lot of drugs, but now only take anti rejection pills (Sirolimus/Rapamune) once a day. I would definitely take that for life instead of injections, pricking, calculating, lows, highs…etc.

Hi Preta! I had my transplant June 17, 2008, not quite four months ago. One week after discharge from the hospital I was at a Foo Fighters concert so I obviously did very well. I feel wonderful, better than I did six years ago before the diabetes was diagnosed! I’m on Valcyte, an antiviral, for 2 more months. My antirejection drugs are Rapamune, Prograf, and Cellcept. I take other drugs like Aspirin and a sulfa antibiotic. The drus are a hassle but atleast I don’t have side effects where as insulin kept me alive but was my enemy at the same time. I lived on glucagon injections,which my husband gave me when unconscious from low blood sugars. Between death and comas the antirejecton drugs are a much better deal than insulin. Why did you have to have the liver transplant?
If you are going to have the pancreas, trust me the surgery was a piece of cake for me. I wish you the best of luck. Colleen

i had the liver transplant because since I’m diabetic…I’m kinda prone to auto immune disease. I developed auto immune hepatatis. It apparently was something I had been suffering a long time with, but it was never caught. In September 01 I was yellow and my stomach was bloated, I couldn’t eat a thing and was very weak. They did a bunch of tests and found out what it was and that I had literally not much time left. Two weeks later I had the transplant and a little under two weeks after that I was out and about.

I originally took Tacrolimus and Cellcept, but after a year they started damaging my kidneys. I have been on just Rapamune ever since and have never had any rejection…knock on wood lol.

I’m glad you are feeling better, I wish you good luck and best health!!

Hey Preta! I think all of the antirejection drugs can cause kidney damage, esp. Prograf. You can’t take anything OTC except for Tylenol for pain. No nonsteroidals like Alleve or ibuprofen. That’s because they can cause kidney damage too. My doctors said the reason I got type 1 was because I have Hasimoto’s or autoimmune hypothyroidism. They say that if you have one autoimmune disease you’re more at risk for others. You exemplify this point perfectly. Hopefully we won’t end up with lupus. Let me know if you get a pancreas. Where did you get your liver? I got my pancreas at Indiana University Hospital in Indianapolis. Take care. Colleen

Oh god, I hope lupus is not in our future.

I was down about no more ibuprofen, but now I totally prefer Tylenol…maybe cause I’m use to it now.
I got my transplant at the Toronto General Hospital, Toronto Canada.

I’m going to inquire about the pancreas…take care Colleen.

Kitty Castellini (also a member, and the host of Diabetic Living Today) has also received a pancreas transplant. She is in her 4th year after the transplant now.

Thanks Manny! I left Kitty a message. It’s interesting to communicate about the disease and the transplant. I never did this when I was actually diabetic . I think then I just didn’t want to focus at all on the disease. I was sure I was going to die again or have other serious problems so I tried to avoid it as much as I could. Although I believe that diabetes has a major impact on one’s life. It’s hard to forget it when daily you are checking BS’s, counting carbs, taking insulin, and going high and low. I sure don’t miss those days. This transplant seriously gave me my life back. It’s that simple. Did you watch the presidential debate tonight? I’ll tell you, I don’t care for Obama or McCain. With the current financial crisis it’s hard to decide which one could screw things up any worse. I’m voting for McCain though because I’m strictly pro-life.Have a great night and take care. Colleen

If you can come to Indianapolis for the pancreas that would be great as they do more pancreatic transplants annually than anywhere else in the world. But I’m not sure how that works if you’re a Canadian citizen since you have nationalized healthcare.I hate to say this to you but I sure hope we don’t get a nationalized system. And if Obama becomes U.S. president we will.I hear alot about people coming from Canada to the US to get surgery and they pay out of pocket because they have to wait on the surgery in Canada. Anytime our government gets control of anything it becomes a less effective, more expensive system.
Of course you could be a US citizen who went to Canada for the surgery. My transplant surgeon, Dr. Jonathan Fridell, is from Canada and went to med school there. He is also supposed to be the best pancreatic transplant surgeon in the world. See, more than good rock music comes out of Canada! Take care Preta.

LOL, yes our doctors go to the states to make $$$. I have no complaints about our healthcare system. Nothing is perfect, but I know that if I am doubling over in pain today I will get the help I need and I won’t have to re mortgage my house to get it done. Especially for someone like me who is diabetic, private insurance wouldn’t even look at me and I know. Before I had medical benefits at work I looked into it. I love our health care system, no one is left behind. We all have the right to be healthy and get the care we need. There is no way I would have afforded the transplant surgery if we didn’t have nationalized healthcare. And I had the best care possible when it was done. The nurses and doctors were the best. But like I said, nothing is ever perfect…it is not perfect here with nationalized healthcare and it is not perfect in the states when you fend for yourself.

I would still have to wait for a match no matter where I went and that is the drag. Thanks for the info about the transplants. Take care Colleen

Hey Preta,

I only waited for sixteen days after insurance approval for my new pancreas through Indiana University. The wait there seems to be less than at most centers. Plus you only need a pancreas, which would make it sooner. I don’t know much about the Canadian healthcare system. Here in the US, even with our uninsured, no one goes without medical care if they need it. Unfortunately our uninsured go to ER’s, which is the most expensive way to get medical care.I saw my transplant surgeon yesterday and everything is going great.Where abouts do you live in Canada? I have friends in Toronto and they love it up there. Take care! Colleen

I live in Brampton which is 30 min west of Toronto.

I too don’t know much about the US health care system. I only know what I deal with…lol. To go to the states would cost even more for an outsider I believe than living in the states.

I’m glad that everything is going well with the transplant. I was lucky too…some people have a rough time with rejection. Good Luck and take care.

I would love a transplant. I was trying to get into a clinical trial for islet cell transplant, but then they told me you can’t get pregnant while on anti-rejection drugs. So, that flew right out the window. But maybe someday…
I am so glad it has worked so well for you! If I ever get to the point of having a transplant, I will check out Indiana!

I had one about two years ago. While I do love the freedom it gives me and do believe I have a vast daily quality of life improvement… it is NOT A CURE!

I’ve been hospitalized four times for infections, landed in the ICU twice. Immunosuppression can be a b****. :wink:

I did it because I have an unusual absorption profile of insulin. Humalog takes about 1.5 hours to kick in in me - and yes I did try other variants like Novolog. Combine that with gastroparesis - which makes it difficult to take your insulin early - and I was screwed. I’d routinely peak at 300 post meals, only to turbo crash in the 20’s a few hours later. I never ate more than 20g of carbs in a sitting because the peaks were so bad.

If I fasted, I had 100% perfect basals. Food was and is my enemy. Eating is a chore!

I personally would never advise someone without complications to get one. If you are well-controlled, it’s not worth the risk in my humble opinion.

I have gastroparesis too! I don’t know anyone who has even heard of it - even some of my nurses!!
My BGs are very volatile b/c of it, and often I crash because I can’t eat as much as I thought I would. I have a more mild case, but it is steadily getting worse. yuck.
I have other complications too. I am hoping that by the time I am ready for a transplant the islet cell transplants will be perfected!

Some of the scariest moments of my life were crashing and having no way to bring that blood sugar back up - my stomach was not moving at ALL. Gastroparesis is a hidden truth of diabetes and more people have the early signs of it than doctors admit. Chronic constipation? Dumping syndrome? All signs that the nerves that control your digestive tract are being affected :frowning: I was written off early as IBS - try again!

For me gastroparesis isn’t just about the stomach - it is my whole digestive tract, all slow. Are you taking any medication for it? I found reglan to be of some help although many are scared of the side effects.