What's your Liver Transplant experience Mayo Clinic (Arizona)?

Posted by singh1 @singh1, May 1 10:29am

It was diagnosed in 2015 that I have fatty liver. But the doctor did not educate me about that. I kept drinking alcohol 2, 3 shots before dinner. In 2021 I start gaining weight, rash on body, swollen legs, vomiting a lot for about 6 months. My doctor still put me on Pantoprazole. I wonder he did not notice from the symptoms that its cirhosis. I ended up Emergency when internal bleeding started, and was told that it's cirhosis, got educated very well about it. Was getting taking care at my local hospital since than. Now I got referred to Mayo for liver transplant. My evaluation has been done.
Now I am looking for anyone who has had liver transplant recently from Mayo Clinic to share the experience.
I'll appreciate it. Thanks

Interested in more discussions like this? Go to the Transplants Support Group.

Good Afternoon

I totally understand your predicament.
It is rather strange they could not diagnose the matter thoroughly and ensuring confusion.
Now that you are under treatment from the hospital, do you know your MELD score? Most decisions are made and based on that number.
I was diagnosed rather accidentally. I was at my Primary for yearly checkup and they found my white blood cells were low and requested me to go the emergency for infusion. For some odd reason they did not discharge me and kept me in the hospital for 4 days. After which it was divulged that that I had cirrhosis in my liver. Only option is transplant.
One of nicest Oncologist called the UVA hospital in Charlottesville VA and they replied and my treatment started from there. My transplant took place on the 17th of January 2019 and I am still around. Mine was a live donor transplant. It so happened an extraordinary young lady donated part of her liver to be transplanted to someone who needs it. It was anonymous at first and then when I met her I just almost fainted. She was a young lady 23 years old from Allentown PA. It is like hitting a lottery. Even now I cannot imagine this had happened and will be ever grateful to her for what she did
There are couple of ways to obtain a liver. Via person who is passed or a live donor like a close family member etc.
When they checked my MELD score it was very low and do not qualify to place me in the waiting list. One has to get close to 18 to 25 to get to the waiting list. Meanwhile one can feel that he or she is feeling ill, by the face getting jaundiced, gain wait and fluid retention in the liver. This needs to be syringed out at a hospital setting.
This not to scare you of anything, but to keep you informed what liver damage can do to someone.
At this stage you need to do certain things:
No alcohol-zero, mild exercise like walking 2 miles a day
No fatty items in your food. Stick oat meal and low glycemic rice and just chicken only and plenty of vegies. Please avoid, nuts, Grapefruit and fast food.
It’s going to tough for you to make the adjustment but you will get used to it.
Usually the hospital will find ways to obtain liver for you depending on the condition such as health etc.
In my case I just had three months to go. The donation just came of the right time. The way I approached the situation is to just stay calm, no panicking and just take one day at a time.
God will look out for you and he will find a way to get you healed.

REPLY

Hi @singh1, allow me to tag some members who have had a liver transplant at Mayo Clinic (not all of them at Mayo in Arizona) like @rosemarya @giuseppe @blbird33 @ajdo129 @klm3 @emilyw @jerrydrennan @amyintucson and others.

Singh, how are you doing?

REPLY
@colleenyoung

Hi @singh1, allow me to tag some members who have had a liver transplant at Mayo Clinic (not all of them at Mayo in Arizona) like @rosemarya @giuseppe @blbird33 @ajdo129 @klm3 @emilyw @jerrydrennan @amyintucson and others.

Singh, how are you doing?

Jump to this post

I have not posted in awhile but am glad to share my experience @ Mayo Phoenix. I received my transplant in 12/2018, deceased donor.

Over an 8 year period prior to transplant I had numerous esophageal varices that needed to be banded, all done by my wonderful local GI doc here in Tucson. Was on the transplant waiting list about 2.5 years during which I made basic healthy lifestyle choices and tried to not beat myself up when I slipped up.

Listen to what your local and Mayo docs advise, be honest with them and yourself. MELD scores count but are not the only factor in who gets the next transplant. I tried to be patient and grateful that those sicker than I got the liver when they needed it.

I would be happy to chat or answer and specific questions anyone has.

Peace.

REPLY
@colleenyoung

Hi @singh1, allow me to tag some members who have had a liver transplant at Mayo Clinic (not all of them at Mayo in Arizona) like @rosemarya @giuseppe @blbird33 @ajdo129 @klm3 @emilyw @jerrydrennan @amyintucson and others.

Singh, how are you doing?

Jump to this post

Hello Coleen and everyone,
Life took a radical turn for me in April. I got very sick very quickly. My husband and I would have been at Mayo Phoenix right now waiting to see if I'd be accepted tomorrow. Instead I was rushed to UCSF in San Francisco. My MELD shot up and I had an unrelated problem with being allergic to statins. Atorvostatin was slowly destroying my muscle mass!
I was list at UCSF in 4 days and on 4/20 a liver came in. At last minute the surgeons told me it wasn't right for me and I was taken back to my room. One half hour late they took me back to surgery because a SECOND liver came in. I woke the next morning with a 'new' liver!!!!!
I feel like I cheated in a way because I only had one serious bout of illness after living with Hep B and Hep Delta for decades and the bout only got bad in late March of this year.
I'm doing really well. The staff at UCSF was wonderful but I found the liver ward caotic, I'm sooo glad to be in my humble little house. My husband is an excellent care giver. I'm improving rapidly.

REPLY

I will not continue with the Mayo support groups. I've found a group in my town and that will be sufficient although i know I can always come back to your group. Thanks for you support even though I barely participated. With gratitude, Joe B.

REPLY
@giuseppe

Hello Coleen and everyone,
Life took a radical turn for me in April. I got very sick very quickly. My husband and I would have been at Mayo Phoenix right now waiting to see if I'd be accepted tomorrow. Instead I was rushed to UCSF in San Francisco. My MELD shot up and I had an unrelated problem with being allergic to statins. Atorvostatin was slowly destroying my muscle mass!
I was list at UCSF in 4 days and on 4/20 a liver came in. At last minute the surgeons told me it wasn't right for me and I was taken back to my room. One half hour late they took me back to surgery because a SECOND liver came in. I woke the next morning with a 'new' liver!!!!!
I feel like I cheated in a way because I only had one serious bout of illness after living with Hep B and Hep Delta for decades and the bout only got bad in late March of this year.
I'm doing really well. The staff at UCSF was wonderful but I found the liver ward caotic, I'm sooo glad to be in my humble little house. My husband is an excellent care giver. I'm improving rapidly.

Jump to this post

Hi Joe, that is quite the turn of events, but what a great finish. Congratulations on your new liver and being comfortable with your husband in your quiet little house. That sounds like home sweet home in many different ways.

As you said yourself, you are alway welcome back to Mayo Clinic Connect and the support groups here (transplant or for other health issues) should the need ever arise.

Thank you for sharing your gift of life journey.

REPLY
@giuseppe

Hello Coleen and everyone,
Life took a radical turn for me in April. I got very sick very quickly. My husband and I would have been at Mayo Phoenix right now waiting to see if I'd be accepted tomorrow. Instead I was rushed to UCSF in San Francisco. My MELD shot up and I had an unrelated problem with being allergic to statins. Atorvostatin was slowly destroying my muscle mass!
I was list at UCSF in 4 days and on 4/20 a liver came in. At last minute the surgeons told me it wasn't right for me and I was taken back to my room. One half hour late they took me back to surgery because a SECOND liver came in. I woke the next morning with a 'new' liver!!!!!
I feel like I cheated in a way because I only had one serious bout of illness after living with Hep B and Hep Delta for decades and the bout only got bad in late March of this year.
I'm doing really well. The staff at UCSF was wonderful but I found the liver ward caotic, I'm sooo glad to be in my humble little house. My husband is an excellent care giver. I'm improving rapidly.

Jump to this post

Joe, I am thrilled to learn that you got your liver transplant! It sure sounds like you had a rollercoaster-like journey and can now enjoy being at home. Fantastic!
You are lucky to have located an in-person support group nearby, and we are lucky that you have shared your announcement of your successful transplant here on Connect. You are proof that the journey to a successful transplant is a unique experience for each and everyone of us. Our stories are a message of hope for those who are waiting for their own transplant.

As you continue your recovery, I ask you to consider visiting this group and consider sharing your own snapshot of hope.
– Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I wish you and your husband every happiness and good health as you begin your New Life.

REPLY
@giuseppe

Hello Coleen and everyone,
Life took a radical turn for me in April. I got very sick very quickly. My husband and I would have been at Mayo Phoenix right now waiting to see if I'd be accepted tomorrow. Instead I was rushed to UCSF in San Francisco. My MELD shot up and I had an unrelated problem with being allergic to statins. Atorvostatin was slowly destroying my muscle mass!
I was list at UCSF in 4 days and on 4/20 a liver came in. At last minute the surgeons told me it wasn't right for me and I was taken back to my room. One half hour late they took me back to surgery because a SECOND liver came in. I woke the next morning with a 'new' liver!!!!!
I feel like I cheated in a way because I only had one serious bout of illness after living with Hep B and Hep Delta for decades and the bout only got bad in late March of this year.
I'm doing really well. The staff at UCSF was wonderful but I found the liver ward caotic, I'm sooo glad to be in my humble little house. My husband is an excellent care giver. I'm improving rapidly.

Jump to this post

hi

That is remarkable.
Now its the time to take care of your new liver.
Pleae stick to the diet plans,workouts etc plus take your medications just on time. You need 12 hour intervals morning and evening. Be vigilant, do not do any thing strenouse. You will be just fine.
God has helped to and will continue forever.

Take care

REPLY

Thanks for the reminders James : )

REPLY
Please sign in or register to post a reply.