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,
I started off taking problably around 9mg 2x a day of prograft and 1000mg of Cellcept 2x a day. It was eventually tapered down to 4mg then in Feb down to 2mg and cellcept to 500mg 2x a day. My dose has fluctuated quite a bit in the last 2…"
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Unfortunately This is more common than you may think . Not my personal experience granted but have heard & read of this happening.
Out of curiosity what were your Prograf levels over the 2 yr period? & doses? As this plays a…"
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