Liver transplant - Let's support each other

Congrats Mr Parker! I have had my liver for just over two years. The transplant team in Phoenix saved my life. I was fortunate enough to get a transplant on the day I was listed! I am so grateful to the people who made my life whole again. Mayo was recommended by someone I talked with at UNOS or I would not be writing this now. I was diagnosed with HCC which was treated with radiation prior to the transplant. This has been a difficult journey for me and my caregivers. Everyday is a gift now. You find out who really loves you because this is not easy. Scans every 90 days, weekly labs, pills, pills, pills. Everolimus, no Tacrolimus. Oh geez your kidneys are getting hammered by the drugs. It can be a roller coaster! My wife of 14 years said “I didn’t sign up for this”. We are splitting up.
Now we get to deal with this SARS-CoV2 pandemic? I have been vigilant even prior to COVID-19 by self quarantine in my vehicle until my appointments. LabCorp and my local doctors are using the same criteria for face to face procedures or telemedicine. I was worried about catching the virus since we have suppressed immune systems. I am not as afraid of contracting the virus as I was because immune suppression could be a positive thing. I have read mixed reviews on this one. The people who fair well seem to have a controlled immune response. Someone help me out here. I am taking every precaution but many misinformed people who are spreading this don’t seem to care. It’s almost inevitable that eventually we will contract this virus unless a vaccine or treatment is found.

I was fortunate enough to also to receive a Liver and Kidney transplant at the MAYO in Phoenix last year after one day on the waiting list. The situation for me is that I do not trust advice coming from news reports or even "Medical 'Studies" until they are Verified by the MAYO or another Major Research University. Stay Vigilant and be wary of information that has not been verified by other Reliable Medical Research. Prepare yourself to quarantine until a Vaccine is available. After the Years of suffering prior to my transplant and then the recovery - I'm going to give myself the best chance. I'm sorry for your separation, I've been married almost 50 Years and my wife has been incredible as we've both have seen each other through difficult times. However as I've spoken with others - If someone leaves when the going gets rough - what were their intentions in the first place?

Hello to all. I am a 49 year old male that got liver transplant in MAYO, AZ. 25th of May this year. I had liver disorder (PSC) which is an auto-immune disease that affects and destroys the bile ducts inside the liver, which in turn, causes liver failure. I had the illness close to 15 years, but last 2 years it accelerated and last few months I had a lot of muscle wasting, unbelievable itching and no energy what so ever. I had 4 calls from December to May with no success and finally the 5th one was it. I stayed in ICU 1 day and 4 days in normal room and was discharged from hospital in 5 days. It was a surprise for me. Just last week I was also discharged from clinic follow ups in 1 month and now I will get blood works done once a week from a lab and send them in. I feel great and thank god there were not any complications afterwords. Can not say enough about the doctors, pre-op team, operation team and the post-op staff. My advice to people that are waiting is that just do exactly what they say before and after the transplant and hopefully everything will be great.

Congratulations! Many blessings to you.
JoDee

@svezir Congrats! Thank you for sharing your successful outcome. Nothing like a happing ending!

@svezir, I want to extend a sincere welcome to Mayo Connect.
Congratulations on receiving your transplant. May 25 will forever be a special day in your life!

PSC is an ugly disease. I know, I transplanted for PSC in 2009 at Mayo Rochester. Like you I was stable for years, then the overwhelming symptoms developed. That must have been disappointing and frustrating for you to have 4 false alarms until you received your new liver on the 5th call. And now that is all behind you and sounds as if you are recovering well. Your muscle strength and endurance will return, so be patient.

How are you adjusting to being at home?

Thank you for your warm welcome. It is comforting know that another ex-patient of PSC is doing well after so many years (as you know PSC is not so common when it comes to liver disorders). To answer your question about being home, actually I am not home yet. I am an international patient from Istanbul, Turkey. I have been in Arizona since November 2019, staying with my sister, who lives here. So I have been away from my family about 8 months, wife and 18 year old girl and a 11 year old boy. I plan to go back mid July to reunite with them and come back for my periodic checks. Nonetheless, it was necessary to get this operation done and continue supporting them for the future. Looking forward to conversations in this forum.

@svezir, There are not many of us with PSC so I am equally happy that we have met here on Connect. I hope that your recovery goes as smoothly as mine did. I was away from my home in Kentucky and at Mayo Rochester for 3 months. On post transplant day 21 my husband and I were dischared from outpatient care to begin our drive home. I can assure you that I am going to be thinking about you and the wonderful reunion with your family!
In the meantime, relax and be easy on your body as it heals.

If you want some reading materials to have with you as you travel, Here are some suggestions:
https://connect.mayoclinic.org/discussion/changes-after-transplant/
https://connect.mayoclinic.org/discussion/post-liver-transplant/
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
Pages>Transplant>Newsfeed https://connect.mayoclinic.org/page/transplant/tab/newsfeed/

Pages>Primary Sclerosing Cholangitis (PSC)>Newsfeed https://connect.mayoclinic.org/page/psc/

@svezir, All of us transplant recipients share similar yet different recoveries. You are always invited to participate in any of the discussions, anytime.

@jdlogan65 that’s amazing that you got a transplant so quickly. Your MELD must have gotten high before you were listed. Were you feeling reasonably well? I see that you were having radiation treatments, I don’t know much about HCC, I had non-alcoholic cirrhosis.

I too have read that people with very active immune systems can be at a disadvantage. It seems as if they are still grasping at straws trying to figure everything out.

It does seem as if many of us will eventually get COVID unless they come out with a good vaccine relatively soon. This is particularly true for those who have to go out. I had not been out of my house except to take walks for 3.5 months but I did venture out today to do 3 quick errands. I was very glad to see everyone wearing masks, and the places I had to go to had excellent controls in place. I live in NH and NH is one of four states seeing a decline in cases. I guess what is being done is working.
JK

@athoub, I want to check in and let you know that I'm thinking about you. You are welcome to drop in anytime, you don't have to wait until you get a story together. In fact, you can simply read the conversation and see if there is something that you might find interesting to you. You might even want to post a response or a question about living with a liver transplant.
Hugs.