Mayo Clinic Connect
Does anyone know
Hi All, I have only been on the list since 9-11-2015. Got my first call in less than 2 months, but died waiting on a plain. 2 other calls with an EBV Pos. but I am EBV Neg. I am slowly going crazy. I don’t know what a year or more would be like?
Jump to this post
You said “but died being on a plain”. What do that mean?
What that year must’ve been like @sandras. I cannot imagine. But I bet you can imagine how @sophiadelgado must feel. She’s been waiting over a year now.
Sophia, I forgot to add the link to the message with information about being on multiple lists. Here you go: https://connect.mayoclinic.org/discussion/i-have-been-added-to-the-transplant-list-for-a-liver-at/
Sandras, how long ago did you have your transplant and how is the recovery going? How are you doing today?
I had my transplant Dec 21, 2013 afer a long long road to recover (i regected 2 times and had many complications) I am now now longer diebattic,free of insuline. It is a miracle that i made it! But i feel so very grateful especially to my doner and his family for giving me a second chance! God bless!
Yes I am type 1 for 40 years, and the pancreas was on a commercial flight that got held up some ware.
I was waiting for it being prepped but its usable time had passed and was not there yet. so it was cancelled.
Oh so sorry. To. Here. That
Hi, I waited for a year and also had many calls. It is frustrating but hang
in there! I personally know what is is like to wait.
Hi @bszychow @sandras @sophiadelgado,
It’s been a while since we’ve heard from you, so I thought I would check in. Sophia and Bob, would love to get an update. Is the waiting over?
Sandra, how are you doing?
Well about a year ago I lost my job and medical insurance so I was placedon hold for transplant. I was then referred to the university of Washingtonfor Transplant since this is in my region. I have been on hold ever sincefighting back and forth with medical insurance I’m to the point now where Itry not to think about Transplant sounds two stressful and everyday lifehas its own issues to deal with. But since chosen to not worry so muchabout and just living life my kidney function has gone up to 26 percent sowho knows I might not even need one when it’s all said and done I’m justtrying to enjoy everything and not street so much. I wish the best of luckto everyone dealing with kidney issues. PRAY FIRST
Liked by Scott
So good to hear from you @sophiadelgado. Sorry that the news isn’t better re your transplant wait. But I have to congratulate you on your attitude. Wow! Mind over matter and increasing your liver function. Well done.
@bszychow and @rosemarya will you join me in welcoming Sophia back?
Glad to know there is some good news in all that mess. I have been through so many jobs and in and out of insurance. one thing I did find was biofeedback in witch I can control some of my body through my mind. no joke it works. now on the list for a year, still waiting. Hope more things start going better for you. keep that positive attitude, it is a big help. Your in my thoughts.
@sophiadelgado, In 2014, I replied to you that I “admired your positive attitude”. That statement goes double, and even triple today as I am reading your post. I am sorry that you have been facing so many detours of the medical insurance system. It is remarkable that in the midst of this mess, that you have been able to focus on living life, and that your kidney function has actually gone up! Are you on dialysis? My experience was pretty much an emergency event, so I do not have any background in what %function makes dialysis necessary. I want you to know you will be in my prayers. Rosemary
@bszychow , time does pass slowly while waiting. And, as if waiting alone is not difficult enough, it sounds like you have endured more than your share of trouble. It also sounds like you have a positive and optimistic outlook. That will help carry you forward. I am happy for you that the biofeedback has been working for you. Our minds and our bodies are capable of amazing accomplishments! Would you be comfortable to share a little about how you used biofeedback? Rosemary
My husband had a kidney and pancreas transplant at Mayo in 1993. He had a second kidney transplant in 2003 but the original pancreas transplant is still functioning. All his transplant numbers look good. Wondering if there are other transplants this far out from Mayo and would like to compare notes. Feeling blessed but support could help.
Liked by Rosemary, Volunteer Mentor
———- Forwarded message ———
Hi Sophia – it looks like you tired to post a message in response to Rosemary, but it is blank. Can you please try again?
So glad to hear from you again!
Hi @ters1993, welcome to Connect.
Wow, so great to hear about the longevity of your husband’s transplants. We have a few members who are long-time transplant recipients. @rosemarya, I believe you are 7 years and counting, right? @dglass4040 was your transplant 2011?
I’d love to move this conversation to the discussion called Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/ Will you join me there?
version 184.108.40.206.9.5Page loaded in 2.578 seconds