Happy "Transplantiversary"!

@cehunt57 I was unaware that they did pancreas transplants until recently. Do they do them for cancer in the pancreas or just for other pancreatic conditions? I ask because a friend's husband died from pancreatic cancer and I can't help but wonder about that. He went to the best hospitals, including the Dana Farber in Boston.
JK

I don't know if pancreas transplant is a viable treatment for pancreatic cancer. I have wondered about that myself. That would be a good question for some transplant team at Mayo. My pancreas transplant was due to very "brittle" and uncontrollable type 1 diabetes. I had complications that affected my kidneys, eyes, nerves and an inability to sense dangerously low blood sugar. The more traditional types of treatments weren't successful in getting my diabetes stabilized.

@cehunt57 I hope your transplant solved those problems and you are now doing much better. I presume some of the effects were probably not reversible but at least you won't have any more with your new pancreas.

You bring up an interesting point for me. What is considered to be dangerously low? After transplant my bg went up a lot due to the prednisone. I was taking insulin for a while there until my prednisone was reduced. They wanted me to call if it went below 80. I am beyond that now and take no pharmaceuticals for my diabetes but my bg frequently is below 80 in the morning and sometimes in the 60s yet I do not feel any effects from that.
Some mornings I feel shaky and am certain my bg is going to be low but on those mornings it is usually not, I'm just hungry.
JK

My pancreas transplant was my own personal miracle. I was not cured from my diabetes but for the first time it became manageable. The complications improved or at least stabilized: the retinopathy improved, the peripheral neuropathy improved, the autonomic neuropathy was treatable and the CKD stayed at a mild/moderate stage for 11 years. I got rid of the hypoglemic unawareness. The danger was in not feeling the decrease in blood sugar at all so I didn't know to test &/or treat it. During that time my husband & kids had to test my blood sugar and treat lows including giving glucagon injections and making some 911 calls. My blood sugar bounced daily between the 20's and 600 something back then. I'm so grateful that that is over now. I'm also thankful to have a medical team that works with me to establish a doable regimen with a personal target blood sugar range. It sounds like you have a team that does this as well. Keep testing bg and keep records for them to review. Make sure to point out the 60's, 70's and feeling shaky.
You brought up an interesting point for me - prednisone. When I had my pancreas transplant it was almost 12 years ago at a different transplant center than Mayo. At that time they were working on using a steroid free protocol as much as possible. I think I only had a steroid medication once while hospitalized, an injection or IV. I appreciated that. Years later I had 10-14 days of oral prednisone prescribed for pneumonia and my bg spiked into 300-500. I'm not looking forward to having that experience again. Is prednisone or some other steroid a given at Mayo with transplants? I will be going to Mayo for a kidney transplant when I find a donor. I suppose I should run that oncern by the Mayo team when the time comes.

@cehunt57, Yes, your pancreas transplant is a miracle to celebrate! Thank you for generously sharing your remarkable story.
I agree that your transplant team are the ones who can answer your question about prednisone.
I needed to monitor my blood sugar after my transplant, too, for a while. However, my levels returned to normal after my high levels of prednisone were tapered. I remained on low dose (5 mg) of prednisone until last year, because it was the level that my kidney needed for immunosuppression. I was approved to taper off last year. Our bodies each needs a different amount of meds for antirejection, so I know that your team will do what is right for you.
Rosemary

@rosemarya That's encouraging, that you are now no longer having to take prednisone. I am a low dose now though so that is not causing me problems. My blood sugar is fine and with that low dose I am not gaining weight. Prior to transplant I was on a prednisone regimen for a couple of weeks and I gained about 30 pounds! That doctor let me come off of it a couple of days early.
JK

@contentandwell, I saw your question about pancreas transplants for cancer and I was with our pancreas doctors yesterday, so I asked about it. Pancreas transplants are not performed for cases of pancreas cancer, except for very limited exceptions (when a pancreas has been removed for some other cause) but the transplant is not performed for cancer. Pancreatic cancer can be so difficult to go through. My sympathies to you and your friend for her loss.
- Kristin

@keggebraaten Thank you Kristin for that information. I know my friend went through a lot in those months leading up to her husband's death. We went to dinner with them and then we were out of touch for about a month. I called to see if they wanted to go to dinner again and he had passed away! I was stunned, not only because he looked pretty good when we went out but that she hadn't let me know. He had so many problems in the end there, I know it was very tough to go through.
JK

On this past Wednesday, April 22, I celebrated my 11th transplant anniversary. This year, it was a quiet day, and a reflective day. April 22 will always be a day of blessings for me.

I kept a journal, and here part of what I wrote on May 2, 2009:
"It is day 10 post transplant. I have been busy and had no time or energy to do any journaling. I will try to summarize and recall some memories that began with the phone call from my transplant surgeon on the morning of April 22, 2009 at 6:42 AM... I feel elated, thankful, relieved, and in awe of what just occurred. I feel so loved and so blessed to have had a successful surgery; to begin an "uneventful" recovery; to have a wonderful family who is here with me; to have prayers and support of family, friends, and friends of friends. It seems like everyone knows someone who wants to pray for me. They make it sound like I am doing something extra courageous. I am only doing what I 'have' to do. I expect that anyone in my situation would do the same thing. My medical team has provided the hands for this miraculous event. The credit belongs to my organ donor."

When is your tranaplant anniversary? What do you remember? How do you honor the day and your donor?

@rosemarya
Happy Transplantiversary! Your years of good health are such a blessing, and something I know you are very grateful for. I hope you have many, many more years of great health.
Hugs, Jane