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Happy "Transplantiversary"!

Transplants | Last Active: Apr 24 9:52am | Replies (35)

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I am going on 12 years post pancreas transplant. I mark it on the calendar and mention it on Facebook. The past year I've got stage 4 CKD and will be needing a kidney transplant. I've been preoccupied with that lately and looking for a living kidney donor.

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Replies to "I am going on 12 years post pancreas transplant. I mark it on the calendar and..."

@cehunt57, Thank you for taking the time to share how you remember and honor your pancreas transplant anniversary. If you feel up to it, would you be comfortable to share how your facebook mention of your anniversary is received by others? In addition to celebrating, this is a powerful testimony to encourage organ donation.

I am sorry to hear about your recent diagnosis and your future need for a kidney transplant. I can understand your preoccupation with that. That is why I included, "if you feel up to it" earlier in my message.
I wish for you to receive a living donor.

Sending you prayers for strength,

I'm not exactly a social butterfly and don't really have a large group of friends on Facebook. I rarely post anything on Facebook and don't have followers. Most people that know me know I had a pancreas transplant and some know that I am now in need of a kidney transplant. I welcome the opportunity to tell my story any chance I get. Most people know very little about Transplantation and are curious. People never heard of pancreas transplants and aren't aware that kidney transplants can be done with a living donor. In my quest for a living kidney donor I would appreciate any advice or suggestions of search strategies from others who have been there or are there now.
Cheryl. @cehunt57

Great question, Cheryl.
You might wish to ask Josh about the resources and tools he's using to help find a living donor. See this discussion thead:
- My plea for a donor http://mayocl.in/2rrKt1U

You can also learn some strategies from the Recipient Toolkit in the Transplant page that our transplant team has put together: http://mayocl.in/2lSxf7C

I agree that very few people know about transplantation. How do we make average Joe public understand? Big question.

@colleenyoung Colleen, I think even those who do realize the importance tend to feel there is no rush and procrastinate, probably not knowing how simple it is. Also, let's face it they do not want to think they might die unexpectedly. No one wants to think about that, particularly young people. I know a few people who said they would sign up but I think they have not yet despite being given the web address where they can go to sign up. I really do not want to nag either but knowing how close I came to not being here and that I "dodged the bullet" thanks to the caring of some person out there, I am thankful all the time and really feel the need to "pay it forward".

@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.

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.

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.

@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.