Liver transplant - Let's support each other

Hello @gman66 and welcome to Mayo Clinic Connect. It sounds like you may be preparing for this procedure and would like to learn from others what could be expected.

Both @rosemary and @athenalee have been recent contributors to this conversation and confirmed they have had liver transplants so may be able to provide you some helpful information as well.

Here is some information I found that may be helpful in the meantime.

- Mayo Clinic Streamlines HCC Treatment:
https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/mayo-clinic-streamlines-hcc-treatment/mac-20430425
Can I start by confirming that you are asking for yourself?

@gman66, I want to say Welcome to Connect. I am a liver and kidney recipient, and I am aware that there are many different symptoms that we, transplant patients, might experience.
Are you listed for, or considering a liver transplant? Have you already had a transplant? What are some of the symptoms that concern you? I would like to help you find answers.

Yes for myself,I am currently under transplant evaluation. I was just hoping to find others in similar situations.

I am currently under transplant evaluation. I was just hoping to find others in similar situations. I have had one resection, and had y90 one year later when another tumor developed. Now I have no symptoms, and I am cancer free 1-1/2 years post y90. The team recommends a transplant, but I feel perfectly healthy and I am wondering if this is common in HCC patients.

@gman66,

Congratulations on the report of being cancer free and able to proceed to transplant evaluation. I hope that the evaluation is going well for you. I can understand that you are probably confused right now, but if I were you, I would place my trust in the doctors who are being proactive with your care. You might stay healthy or your health might begin to fail. I do not know the common pattern for patients with HCC.

I want to share part of a conversation that @japv2001 posted on Sep 7, 2018.. Here is the link where you can read what he, and @jodeej, and especially what @keggebraaten have shared.
https://connect.mayoclinic.org/discussion/new-blog-posts/?pg=19#comment-138817
@charicen, @silverwoman, @contentandwell, @jerrydrennan, What would would you share with @gmann66 about your transplant and HCC?

I'm 30 months post transplant and it sounds as if gman66 and I may have a common thread to our stories. I too had HCC after many years of cirrhosis due to PBC. The miracle workers at Mayo Jacksonville were able to eradicate my liver tumors with Y-90 treatment but, as wondrous as that was, it didn't mean I could immediately be put on the transplant list. I had to remain cancer-free for a period of time stipulated by UNOS in order to be put on the list. I finally met the criteria after the required time elapsed and was very fortunate that I didn't have to wait long (just a matter of weeks) before my call came that they had an organ donor for me. The waiting to satisfy the UNOS requirement is a bit tense, but the way I look at it I would likely have been dead six months after my diagnosis and every day that the Y-90 bought me was one I didn't have before. I went for the transplant because it was my understanding that once a cirrhotic liver starts to develop HCC tumors, it will in all probability continue to develop them, so transplant was my best option for living a longer, healthier life. It is also relevant to my case that I never felt very ill from my PBC; my liver did a very good job of compensating, so I wasn't debilitated and was a good candidate for transplant; that matters.

I am almost 8 months out from my transplant and short of two years diagnosed with Stage 3 liver cirrhosis. I did not have HCC, but have PBC and two other autoimmune diseases. I agree that being in the best health possible is important for being a candidate and recover post transplant. When I was diagnosed, my liver doctor told me to eat healthy (which I was doing) and exercise (which admittedly I wasn’t much into other than walking my dog).

I added more protein to my diet, more walking, and gentle exercises. Even when I was ill enough to be on the list, I continued my regimen as best I could. So, if you can, I encourage you to walk and exercise if you don’t already. And, of course only within any limitations you may have. I’ve found talking with my liver doctors and nutritionists about exercise and diet to be valuable.

This series of articles was also very beneficial for me: Nutrition and the liver transplant patient. Part one: pre-transplant.
May 2015; Lynsey Spillman at Cambridge University Hospitals NHS Foundation Trust. I’ve attached the pdf.

@gman66, There are some new responses that address your concerns about symptoms and transplant for HCC. I want to call your attention to the personal experiences that @silverwoman and @athenalee have shared.

What kind of questions would you like to ask them?

Hello. I previously posted the first of these articles, which is in this stream. These helped me immensely. I would also encourage transplant patients to use their transplant team as a resource! Don’t hesitate to ask questions, before and after surgery, and post transplant. And, push back if you don’t understand why or what they are advising. They are fabulous and are there to make sure you heal! The team is composed of doctors, nurses, nutritionists, social workers, and others for a reason.

Had I known more before my transplant, I would have done more research about recovery so I would have been more prepared. Here a some of my observations:
1. Transplant patients often do not have appetites. But, I was constantly told I wasn’t getting enough protein. I was on a feeding tube throughout my stay and was sent home with it! Ugh. I do not eat red meat or chicken and hospital food is the worst! Especially when it comes to vegetarian cooking. I also do not eat sugar, so didn’t drink the Ensure. One of my supporters researched alternative products, so I found Orgain. It was and continues to be a life saver! So, I think it is good to advise patients about this in advance. Had I known, I would have been much more prepared. I did not have nearby supporters to bring me things regularly during my hospital stay and Covid made it difficult as well.
2. As soon as patients are able, they need to walk. I was set back because I did not get the assistance to walk as I needed. Nurses are too busy; and, some nurse assistants were very willing to walk with me, but most were not. My insurance wouldn’t cover in hospital PT, which is a travesty. So, I finally insisted that I be allowed to walk without an assistant. But, it really sent me back and made it harder to be more able to get around when I was released.
3. When patients are released it’s important that they eat well and exercise to the extent of their ability. Again, if they have nutrition questions, request to speak with the team nutritionist. Continue to do research as well!
4. I would advise patients to keep a list of symptoms they have post transplant, questions, medication concerns/questions, etc. and send these to their transplant doctor prior to follow up appointments. It’s helpful for the patient and the doctor/nurse.
5. Transplantation is an extremely traumatic experience. Being ill beforehand and usually close to dying, major surgery, hospitalization, feelings of being a burden to your support team and your care providers, feelings of guilt around your donor, employment concerns, recovery concerns and more! I was never personally one for counseling, but I will always be indebted to my team social worker. She was the best person with whom to discuss all of my concerns and doubts! I have found post transplant to be very emotional. I cry often and was never a cryer! Other transplant patients have said this happens. So, it’s important that transplant patients know this and not feel shame or guilt around this. And, to know this is normal and that these feelings may continue for months and undoubtedly for years for many of us.

Ha! Sorry everyone, I was responding to the initial comment, which I just realized was from 2018! Well, maybe somebody will find it helpful.