Who is going to the reunion picnic on July 28, 2024?

That’s incredible! Congratulations to you all those you’ll meet with! What an amazing experience. I won’t be attending, but it sounds like a wonderful event. Enjoy and please post about it.

Celia, thank you! I have lived a miracle from day one! I truly believe I was transplanted for a reason other than the fact I was dying. When my transplant was done, I was told I would not have lived 2 more month if I hadn't had it done. Since then I was at the old Gift of Life Transplant House when it was the old convent and a separate house. I just happened to be in Rochester, in the same building, standing near FIVE different people, at five different times/occasion/dates, when someone uttered "I give up, I'm taking myself off the list and am just going to go home and die quietly". I got on my soapbox and gave them the "you can do this" speech. Not ONE of them gave up!! I realized that God had me there for those people, and if I had not needed that transplant, I wouldn't have been there for them. I knew then that I was on a mission... I lead by example. If I can do it, others can too. Sadly, age, and genetics have slowed me down greatly, with many post transplant (non related) surgeries, and other age related issues, but it hasn't stopped my working with transplant support. I am a very gifted writer (inspirational poetry) with a book published, and I help run near a dozen Facebook support groups with combined memberships of over 20 thousand! I am a musician, and have penned a few donor related songs, as well as some Christian music. I am truly blessed! I have been married to my bride for almost 41 years, and raised 5 children...
My biggest hope in attending the reunion picnic, is to instill hope in those who are newly transplanted, and those who may feel the statistics show shortened life expectancy. We can be the exception!!
Sorry for the long response, Im just full of joy for the days I've been blessed with!

I got off the phone with a nurse from the clinic, and was basically told that only patients that Mayo is following will be invited to the transplant reunion picnic. Mind you, this is a picnic that was envisioned, planned, and carried out by liver transplant patients, without the help of Mayo at all. Mayo took it over when other transplant fields began to complain they too wanted a picnic. I could no longer afford the 7k-9k yearly out of pocket to go to Mayo, and my PCP took over my care. I had a family to support, and that was more than 1/3 of my take home pay at the time.
To say I am highly disappointed, and heart broken is an understatement to say the least. I was one of the earliest liver transplants done at Mayo. I was #397, roommates with my friend Dean who became #398.... One would think with that many years behind me, they would welcome me as an ambassador of their program, and its success. Instead, I was told I don't qualify because I'm not an active patient.
So, if you are going, have fun, enjoy, make new friends, and remember me when they ask for the longest surviving transplant from each group... I would have been amongst the last standing..
Peace...

@bigjoek, I'm so sorry to see your enthusiasm deflated so quickly. Leave this with me to investigate.

Liver transplant #397! Really!?? That's amazing. I'm rolling out the red carpet for you here on Mayo Clinic Connect. Welcome!

Would you do me a favor and share more of your story? See this discussion:
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

I look forward to getting to know more about you and those early days of liver transplant. How far have we come? Do you know of things that have improved since those early days to transplant recipients? What was it like to get the call?

Thank you for your kind words. I would love to say I understand the clinic's stance, but just because I haven't spoken to an extended family member for a number of years doesn't mean they're aren't still family!
If they were to extend an invitation at this time, I would be inclined to decline due to the principle of this issue.
To answer your question, yes, I was #397, and room mates with a man named Dean who was #398! We had breakfast the Friday before I was called (October 31, 1992) and I was called that night, he was called I believe 3 days later. He has since passed, but was the first patient on Progaf to father a child! As Im sure I stated, I was transplanted on Sunday November 1, 1992, yes a Sunday AND All Saints Day! I was truly blessed!
I'd be happy to tell more of my story if you do wish, just let me know how detailed you wish it to be. I did a lot of firsts back then...
Thank you for reaching out. I've gotten over much bigger issues than this, I'll get over this easily.
Peace

Thank you. Click this link
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

Yes, please add your story. I'll let you decide the depth of detail you wish to describe. I'd like to hear about the first and how you're doing now.

@bigjoek & @colleenyoung I’m a post pancreas alone transplant recipient 2005. It was done at U of MN, a teaching hospital / transplant center. The pre transplant evaluation was adequate. The transplant itself was fantastic and felt like my own personal miracle; a Gift from God! The follow up from U of MN left a lot to be desired. I’m diabetic and pursued this transplant to help with diabetic complications such as vision problems, neuropathy and kidney disease.
In 2016 it was time to consider kidney transplant. This time I was evaluated at U of MN and Mayo. Let’s just say they aren’t comparable and I chose to list with Mayo. I encountered a Mayo statement around that time something like “Once a transplant patient at Mayo, always a transplant patient at Mayo”. (Lifetime guaranteed membership?) This is a loose translation because that was 8 years ago. I took it to mean that Mayo would support my post transplant needs & care for the long haul. When I inquired about this statement for clarification I found out 2 things that were a bit disconcerting. The 1st was that the statement didn’t apply to my pancreas transplant because it wasn’t their transplant work. I’m on my own to care for that. The 2nd thing was that the statement didn’t actually apply to me at all because I hadn’t had a Mayo Transplant yet! I mistakenly assumed that my pre - transplant evaluation, approval & acceptance for transplant at Mayo counted. Guess not. Not everything is as it seems.
So Colleen you are our smart, fearless, forward thinking leader. You communicate well. I look forward to hearing about your investigation. I think @bigjoek ’s experience and even my own to a far lessor degree make Mayo look bad. Transplantation is such an important and hope giving treatment. All the ambassadors that can be mustered are beneficial. I think this picnic could be an educational, inspirational and supportive event that would only further the great reputation of Mayo’s Transplant services.

I have tried several times to post my story to your site, but I think my story may be a bit too long for your page. I've been watching the "circle of death" for over an hour waiting to see if the story would upload, and so far, nahhh... It's just my string of luck... but I did save it before trying to share it, so I still have a copy.
On another note, thank you for what you're doing here. I think it's a wonderful forum for patients of all types.
Regards
Joe

Sorry that you've been watching that dreaded, never-ending red circle when a post won't load. Thank goodness you saved a copy. Would you mind trying again and splitting your story into 2 or more parts?

now why, as a writer, didn't I think of that?!! LOL I shall do just that
thank you! Is there a maximum character count or word count per post?
thank you again
Joe