Liver transplant - Let's support each other

Wow! That's really quick. I think that I was thinking it would take weeks before you felt that strong. Thank you for the information. Is there anything that happened during your recovery that you didn't expect?

Hi, @manuelhsilva. Are you currently on the liver transplant list? What have your doctors said about whether you would be a candidate to get a living donor?

@brianna yes that was very quick. I went home after just 4 days. I was the poster child for liver transplant patients at Mayo Jacksonville :). What I did not expect during my recovery was being numb in my abdomen where my new liver is. I will be numb there for the rest of my life.

Thank you for sharing your experience. I am currently in the process of evaluation. I have not been added to the list yet. I'm really not feeling well and I'm just scared. I would love advice about how you kept going when things got so tough.

Your strength is inspiring. I'm glad things went so well for you. Thanks for the information about numbness. I had not heard about that yet.

@brianna, I understand what you are going through. Where are you being evaluated? Because right now there is another member who is undergoing evaluation for a liver transplant in Jacksonville.
I was diagnosed with PSC (Primary Sclerosing Cholangitis) that made me nauseous, jaundices, fatigued, with ascites,..and eventually kidney failure. I transplanted both a liver and a kidney in 2009 when I was 60. Immediately adfter I came out of surgery, I felt like a new person. I could breathe, taste food, wanted to eat, rgained strength and have been blessed with good health ever since.
My secret to surviving was one day at a time, and a good team of doctors who directed me along the way (and I listened and did exactly as they said).
This might be too much information, however I was asked to write about my journey -
Pages >Transplant >Staying Positive While Waiting for a Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

Hi Brianna I’m a 57-year-old male I was diagnosed back in 2010 up in Boston Massachusetts and have been on the waiting list since then I was told I should try the mayo clinic in Jacksonville so I am down here for the month I’m glad that your surgery went well at your age of 60 they told me that the cut off age was 55 so knowing that you were 60 and had it done successfully I am glad to see the end results thank you for sharing your story with me it’s just nerve-racking to be waiting and waiting and waiting and not find a donor I was doing the deceased donor and also a live donor some of my family and friends couldn’t do it because of their BMI and because some of them had too much fatty around their liver so they went on special diets to get approved on the list and then they were denied because they incurred too much scar tissue So that took them off the list automatically they can no longer be a donor for a liver I just want to put this behind me so I can go on with my life I have been through a lot and still am going through a lot I haven’t had any major issues nor has my skin or eyes turned joined us I pray every day that this gets resolved again thank you for sharing your story and God bless

@manuelhsilva, I think that you meant this reply for me, @rosemarya. That's ok, it can get confusing.
You mentioned Boston and Mayo JAX, are you double listed?
How long have you been on the transplant list? You say no major issues, that is good to hear.
What questions do you have about transplant? I will try to help you.

I expected the same after my June 2019 Liver and Kidney transplant. After 6 months my feeling started to return and now after 9 months, it's over 80% back .I'm a 69 year old male - so your healing process may be much faster. My Liver has never had any problems - my kidney has minor problems. I lost 2 years fighting through this and it was worth the journey.

@benlam11 Your story is a bit similar to mine, but I did finally get a diagnosis up here. The first PCP called me on the phone and told me she thought I had Alzheimer’s. I quickly switched PCPs. Due to the HE episodes I was sent to a neurologist because the PCP thought I had a neurological problem. The neurologist was the one who suggested a liver problem, that was a year and four months after my first HE episode. I got an appointment with a hepatologist at Mass General as soon as possible. They were wonderful there, my experience was similar to yours at Mayo – they are #1 and #2 in the country. The hepatologist put me on xifaxan and for a long time I only needed that, no lactulose. I now go to Mass General for everything except my PCP. I would go there for that too but I figure I should have him closer. During the day it can take 2 hours to get to Boston.

@khh as I said above, the PCP thought it was Alzheimer’s. When I finally did get the cirrhosis diagnosis I realized how ridiculous it was that no one put two and two together before that. I had so many telltale symptoms – declining platelet counts, shaky hands, cramps, and the big red flag, episodes of confusion and irrationality.
Please insist on seeing a doctor. More than likely you will be advised to have any immunizations now, pre-transplant, before you are on immunosuppressants. Some are fine after, like pneumonia, but some are not. MGH has not approved the shingles vaccine. It is not a live vaccine but they are concerned because there is a protein in it that increases your immunity.

Hi @brianna Welcome to Connect. I was up and walking by the next day. A nurse would take me for walks and when my husband visited we would circle around the unit. They encouraged me to do so.
I hope all goes well with your evaluation. I found it draining but it has to be done.

@manuelhsilva Welcome to Connect. If you don’t mind sharing, which hospital in Boston were you evaluated at? When I was at MGH they did not have an age restriction, it depended on the health of the candidate. I was two days short of 69 when I had my transplant. At Mass General they did tell me that the Boston region often transplants at a higher MELD due to such high demand and they suggested looking into Florida and Indiana. I’m not sure where in Indiana, nor did they specify where in FL. I did look into Mayo in MN and was considering them because they told me they would probably be able to transplant me at MELD 28 and at that point MGH was saying in the 30s. Thankfully they did come through for me at MELD 28 though. At that point I was going downhill fast and my MELD was about to be increased.

@tjgisewhite Four days, that’s phenomenal! I was in for 6 but my recovery was amazing. By the time I left the hospital I had very little discomfort and my incision had stopped hurting. When I went for my first post-transplant appointment, two weeks after the transplant, they were amazed that I looked so good. I believe that losing weight and exercising before the transplant really helped me to recover faster. I did both of those thinking it would help.
JK