@bszychow

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?

@colleenyoung

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?

Jump to this post

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!

@bszychow

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

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.

@bszychow

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

Oh so sorry. To. Here. That

@bszychow

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

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?

@colleenyoung

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?

Jump to this post

Well about a year ago I lost my job and medical insurance so I was placed
on hold for transplant. I was then referred to the university of Washington
for Transplant since this is in my region. I have been on hold ever since
fighting back and forth with medical insurance I’m to the point now where I
try not to think about Transplant sounds two stressful and everyday life
has its own issues to deal with. But since chosen to not worry so much
about and just living life my kidney function has gone up to 26 percent so
who knows I might not even need one when it’s all said and done I’m just
trying to enjoy everything and not street so much. I wish the best of luck
to everyone dealing with kidney issues. PRAY FIRST

@colleenyoung

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?

Jump to this post

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?

@colleenyoung

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?

Jump to this post

welcome 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.

@colleenyoung

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?

Jump to this post

@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

@colleenyoung

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?

Jump to this post

@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.

@colleenyoung

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?

Jump to this post

———- Forwarded message ———

@colleenyoung

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?

Jump to this post

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!

@ters1993

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.

Jump to this post

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?