Liver transplant - Let's support each other

@karmamamma, Congratulations on your successful transplant! You are a champion. No doubt you are a strong willed individual to have come through all of these barriers. I am looking forward to learning more about your journey to transplant as you join in out transplant discussions. As a member, you can join in anywhere. A hint: If you want to address a question or comment to a particular individual, use their @name.

Are your doctors concerned about your weight gain? I was the opposite after my transplant in 2009. I needed to gain weight after transplant because I had lost so much muscle mass prior to surgery. I remember that at my 4 month check-up I was scheduled to see a nutritionist for advice on healthy eating and controlling weight. Since you are at Mayo, I expect that you will have access to a nutritionist. If this has not happened, you can request one.

Here is blog post by Mayo Clinic transplant experts:
– Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It https://connect.mayoclinic.org/page/transplant/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/

This is wonderful that you are doing this. I am new to all this and my biggest issue is trying to find online virtual meetings to interact with others going through the same thing. Questions, concerns, what am I experiencing and should I be concerned and seek advise or is this normal process of the disease.

Thank you for your comment. I am new to this site and the whole process. I am currently doing work up here in CA for a Liver Transplant. My MELDS are 26. I am looking for virtual websites and interaction meeting to meet and speak and share with questions/concerns and everything.

Hi I am 5 months post transplant diagnosed with HCC, cirrhosis,fatty liver and liver failure all in one day at Mayo! I was sick for years and misdiagnosed from other so called drs. Had y90 in Aug tumor was rendered non viable got on transplant list and 6 months later I was blessed. I had to go for thoracentesis 3x week removing 2.5 liters each time I was drowning ..today I am doing great! Only complaint is weight gain but I'm working on that I wish you much success And if you're fortunate enough to be going to the mayo clinic you are in the best hands in the world. Good luck!

Do you live in the Jacksonville FL region? Do you know about the Second Chance Support Group, Mayo Florida?
https://connect.mayoclinic.org/event/liver-kidney-pancreas-transplant-second-chance-support-group-110/

@gman66, I would like to tell you that I am thinking about you as you complete your evaluation process. Even though you have not heard from other HCC patients as you had hoped for, I assure you that those of us who have had liver transplants, are ready and available to share from our own experiences.
How can we assist you as you move thru the evaluation process? Do you have any questions?

@athenalee - The content that you shared from your experience is appropriate anytime. This is a great place to share it. Members and viewers are always popping in to see what is happening in the transplant world.
Healthy eating and exercise, keeping a list of symptoms, and the emotions and trauma the real. I went thru similar experience in 2008-2009, and your list and references would have been a welcomed resource for me and my back at that time. And still important today!
Thank you.

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

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.

@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?