I am new here too, but have had my pancreas tx going on 10 yrs. April 10. 2009. When I had my transplant, I didn't even know they did a pancreas alone tx. It saved my life! I was diagnosed with juvenile diabetes at the age of 15. I have had a lot of complications related to diabetes; from a heart attack at the age of 32, a stroke, as well as becoming visually impared and unable to drive anymore. This is tough sometimes, but I try hard to be a positive person. Attitude means so much!.
I was on high doses of prograf with my pancreas transplant and eventually it effected my kidneys. Started hemo-dialysis and continued that route for over 2 years. Recieved my kidney (cadaver) transplant in Octover 2004. Now I am on a low dosage of prograf, and try to keep my tacrolimus level somewhere in the middle of the two scales.
I feel very lucky and blessed to be alive. Although I am limited with my vision, I don't let that stop me. I love to play golf, bowl and travel...we will be returning to Italy in September! I do have a wonderful daughter and a great husband. A good support system is critical.
Please, let me know if there is anything I can help you with. I will try my best.
I too had a kidney/pancreas transplant. I just had my one year post tx check up. I was a diabetic for 35 years before my transplant. This indeed is a journey isn't it?! I am still trying to get use to NOT being a diabetic, still very strange to me. I was a very anal diabetic. I never had any problems until my doctor told me I was in kidney failure. Surprised even the doctors.
Lets "talk" any time.
Sorry for the delayed response...my "good" eye (L) hemoraged a week ago, and well, there we are.
I was diabetic for 38 years, with a number of complications, but mostly with my eyes. I am coming up on my 2 year post tx anniversary, and since last year, I've gained 20 pounds. My Endocrinologist, whom I've been with for 20 years, said it's not all fat, it's the prednisone, too. I'm only 4'11'' , and am now back on a portion controll lifestyle!
Have you had CMV? If you don't know what that is, THAT'S good!
Anyway, I hope to hear from you again!
I am new to this, but do hope to receive input and chats from many new friends. All these
letters sound so very much the same as my situation. I was a diabetic for 47 years, receiving
a p/k transplant 1.8/08. Had gotten a long perfect for 15 months, then suddeny received higher
loevels of Amylase and Liapase-- showing a slight sign of pancreas rejection. Has anyone
else experienced this? Would like to hear from one and all. Nancy
it was a month after my kp tx that I had mild rejection...I went to the hospital, at the request of my post-transplant group, and they did a biopsy, fed me an IV of a steroid, and I was okay! You've been in touch w/your team, yes? What is your amylase count? Do you drink alcohol? I do, and have done reseach on it as well.
Haven't chatted for awhile. Amylase/Liapase count is doing well... staying stable,
now my darn Prograf is somewhat jumping around unexpectedly. Guess it can happen.
They've been adjusted my dosage of course. Want to see it highter; was a 8 today.
Taking 3 mg am and 2 evening. See what happens next week. Have you experienced
this? Sounds like several have after reading some of these messages on this site.
Just reading through some of the messages that have been left by Pancreas transplant people
and saw yours. I'm somewhat new at this, but you've probably seen my name around already.
I was a diabetic for 46 years and received a pancreas/kidney transplant 16 months ago. Your story sounds a little familiar; as I was doing fine (I thought) until the creatiine level began to rise; and
later I was feeling the affects. I did PERFECT for 16 months and just in May had a "bump" in the
road -- level s began to rise and biopsy showed slight pancreas rejection, so after many different
treatments (IV) and hospital stays, things are getting back to normal ranges. My biggest
thing now is the higher doses of prednisone -- makes me feel strange some of the time. Never
been on this much and hopefully they will begin to wean me down. I guess rejection can happen
for no known reason; but it was a shock to me and my family (not to scare you).
Hioe things are going well.
Like to hear from you,
According to the National Diabetes Educational Program, one in ten Hispanics over the age of 20 have been diagnosed with Diabetes. However, small changes in lifestyle living, e.g., healthier eating & exercising are key. Nugget: Exam=Prevention.See More
Hang in there - I have been caregiver to my husband for 7 years, and he's been through many surgeries and illnesses....and we both have our worries and down days. I will keep you in my thoughts - and hope for the best possible…"
Hi,First post folks. I'll begin with quick background: My 15-year old daughter had a heart transplant 6 months ago after having severe dilated cardiomyopathy with left ventricular noncompaction (now known to be a result of a genetic mutation original to her). Anyway, transplant was at the highly acclaimed Columbia/NewYork-Presbyterian Hospital - to which we moved for waiting for the heart, transplant, and follow-up care. Now, 6 months after transplant, we moved back to our home. Our medical team has a different protocol for checking for organ rejection.Whereas NYP's protocol is cardiac biopsy every month for first year, every 2 months for second year, and every 3 months for third year, our hospital's protocol moves to every 3 months after 6 months, then every 6 months after a year and every year after 3. Bottom line- much fewer cardiac biopsies.I'm wondering if you know the different protocols in checking for solid organ rejection / heart - and how they differ from different medical…See More
Hi, My wife had a double lung transplant, 16 years ago this Sunday. At the age of 27, dying from CF, she was gifted life by the transplant team at MGH in Boston, and two non-related living donors. We've been together for 8 years and I play both roles of husband and caregiver.Although her sweet 16 "Lungaversary" is Sunday, on Monday she goes for a major surgery (not pulmonary related). I sure am nervous. I've witnessed her resilience, self efficacy and recovery from multiple pneumonias, illnesses and painful secondary ailments caused by medications. But this total open abdominal procedure will really immobilize her and expose her to infection (inpatient or out). I'm scared, but can't fully express it because she is scared and seeks emotional comfort and strength from me. Every day I "should" be grateful, not worrying.I apologize for writing so much on my first post. I hope to find some support and insight here.StefanSee More
I recently injured my hand and now have to have surgery on it to repair it. They are going to be putting me out for the surgery. Now grant it, I, on a regular basis go to my transplant center for different procedures(ie;allomap, biopsies, heart caths, etc) and feel completely at ease in doing so, it has been 4.5 years since my heart transplant, Yet I have found myself with a lot of anxiety going into this surgery, one that they are putting me under, two, it is not at my transplant center but at another hospital. It is really weird that i seem to have more anxiety concerning this surgery then I did about my transplant. The faith I have been granted affords me to have confidence in my eternal destiny to be with Christ and that is what/and has guided me through my entire transplant journey. Can anybody shed some light on their experience they have had with other surgeries following transplant. With a grateful heart, JeffSee More
"Hi Phil, Before transplant I had hepatic encephalopathy which my gastroenterologists treated with medication. My reflexes were slow and my judgement was often faulty. Until the fall before my following Spring transplant these episodes were few. They…"
"Hi there! I notice people are not that active on this page. I had acute liver failure, had a transplant in 2011. I take 3mg of Prograf only. I also, on the advice of my Mayo Clinic transplant surgeons take the vitamins Calcium, E and magnesium. I…"
I lived with stage 4 (end stage) liver disease for 15 years. The fall of 2010 was the beginning of a rapid decline. I received a transplant in May of 2011. As you know a transplant gives you a new life but does not cure the hepatitis C, it begins its damage of your new liver immediately. Thanks to the incredible staff of the Mayo Clinic Liver Department and new drugs Solvaldi and Olysio I have been virus free for over 5 months and hope that my 6 month blood test will be still be negative. Interferon and ribovarin would show no virus and then a month or so it would rear it's ugly head. I had no side effects from the two new drugs. These drugs are very very expensive but I was fortunate that Mayo knew where to go for help with these two drugs whose combined costs is $58,000 per month for 3 months. $174,000.
A group for those of us who had a liver transplant due to acute / fulminate liver failure. Here we can discuss our experience with this unexpected form of organ transplant including psychologically, physically and all else that goes with it.