Cirrhosis of the Liver: What to expect when waiting for a transplant?

@jaxpilot, Your lake photo is beautiful, even without your image! I love being outside, but my adventures tend to be on land. Was this your first adventure on the water since your transplant in November? My first outdoor adventure after my transplant was in the Great Smoky Mountains National Park. I was able and approved by transplant team to do some hiking 9 months after my transplant.
It sounds like you had a good check-up with your transplant team with your medicine adjustment to meet your personal needs!
Like you, my PCP in KY handles all of my non-transplant care, and he is completely at ease to follow any of my transplant team's recommendations.

@hellolance, I feel happy to hear that you have met with the Liver Socialist and that he was able to provided you with the information that you were looking for!
You asked if my life has changed and the short answer is Yes. I am healthy, active, and grateful to be alive. I was 60 when I received my transplant. Prior to my transplant I was monitored by my local GI for 8 year due to Primary Sclerosing Cholangitis(PSC). It is a rare, progressive liver disease with no known cure. My journey to transplant was like an out-of-control roller coaster, and I fortunately had a great medical team locally who new when to send me to Mayo Clinic in Rochester MN for my care when there was a possibility of cholangiocarcinoma, and at the same time I was hospitalized with acute kidney failure. I had many ugly symptoms, and even needed a wheelchair to get around. My family, friends, faith provided the strength to face each day until...I received my transplant from an anonymous deceased donor. I had a simultaneous liver and kidney transplant (1 donor, 1 surgery, 2 organs) I was blessed to experience a miracle! My recovery was immediate and I began PT to regain my strength and muscle mass to walk again. As I responded earlier, I was able to do some hiking after 9 months. My full story is included in the link that I share below (Organ Donation and Transplant: What is Your story?)

For me, the physical changes are positive, however, the most precious change that I have experienced is that I feel more sensitive to, and appreciative to what/who is around me.
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@jaxpilot, @hellolance, and all -
Here are some Transplant discussions that I think will be of interest to you - now and in the future: As Members, you are invited to participate in any/all discussion groups. Read, be inspired, share your story:

- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
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- 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/
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- Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant

si lo traduces aqui lo entenderas. Tengo un transplante de Higado desde hace 3 anos por los mismos motivos de Cirrosis por que aparece depende de lo que tu comas, bebes, medicinas que has tomado etc. Pero sigue las reglas de los doctores, pregunta siempre y claro informate bien hay mucha informacion que te sirve. Entras a una lista de espera dependiendo de tu MELD score que por cierto sube y baja. Por esta razon tu lista de espera por lo menos aca en California es larga. En mi caso, mientras la CIRROSIS se desarrollaba tuve que esperar pero com el doctor me informo tuve suerte porque aparecio un diminuto CANCER en mi Higado y eso hizo acortar mi espera a tal punto que me enviaron a MAYO CLINIC en Arizona, dos meses estuve ahi y me transplantaron en la epoca de Pandemia Covid fue duro estar solo en una habitacion sin tener a mi esposa a mi lado, todo ha pasado entraron a mi Higado 9 veces ERCP para limpiar mis ductos Biliares y para Febrero 2020 me dicen que el higado transplantado esta nuevamente CON CIRROSIS entonces a tu pregunta como aparece esta enfermedad ni los medicos te dan una real contestacion, me dicen aca en California que PODRIA ser esas intervenciones LO QUE PROVOCO la degeneracion del HIGADO TRANSPLANTADO. Pero sigo al pie de lucha no la dejo porque YO decidi seguir adelante aque el DIOS quien decide el destino de uno YO HUMANAMENTE con la ayuda MEDICA seguire en mi lucha por un segundo TRASPLANTE, por lo tanto no te desanimes TEN FE y pide a DIOS lo que tu esperas y el siempre escucha SUERTE

Hi, I too am feeling great discuss in myself. I would say that I am fairly intelligent but when I came to my diagnosis I went into denial and became really stupid. I don't understand why I didn't research my butt off like I do everything else. I think I believed my PCP when she said (10 years ago) "everybody has elevated liver enzymes once in awhile and even mild fatty liver because of the American diet" I'm so very mad at myself. Now I sit here with stage four liver cirrhosis, while I'm told my liver is functioning well which completely baffles me. I'm so sad and so confused. I was just with stage 4, 3 weeks ago. I have no idea what to expect. ={

Hello,
I also am in limbo. I am currently on the transplant list at Mayo Jax but inactive at present. My liver function is quite good but I had a tumor removed a year ago. I am wondering if anyone else had their transplant when they were feeling fairly well and if life after transplant is better. I guess what I mean is, is your overall quality of life better. Do you feel well? Thank you for being here and your willingness to share.

I am not feeling ill at all from my liver disease, yet and so thankful. I'm so sorry that you've had to have a tumor removed. How long have you been on the waiting list? Am I supposed to get myself on the waiting list ? Thank you for being so kind and responding to me. It really is so comforting knowing that there are others out there that understand because it really feels a bit lonely. I guess what I mean in that is that no one I have met can understand enough to validate. And being able to talk with other people is so validating and comforting. Thank you so much.

Hi, @missi. I want to welcome you to Connect where you can talk with others who are like you - with questions and experiences of their own. Myself, I am a transplant recipient, and I completely understand the fears and concerns that you are experiencing. Please be assured that your earlier denial is something that is quite common until symptoms begin to develop.

I am glad that you have already connected with @parrot53!
I see that you have asked about who/how to get referral - Do you have a Gastroenterologist or a liver doctor? Ask your PCP for a referral to one in your area.

H Rosemary, thank you so much for your kindness and compassion. The denial pieces are really big pill to swallow. I just keep thinking I should have done something or could have done something and now I'm in this mess. I think it'll take a long time to not be mad at myself if ever. I have seen a GI doctor who specializes in hepatic disorders. I have to say that it has been rather a cold and disconnected process. He conducted an in office density test and this was the first time that I had been given the information that I was suffering with cirrhosis and his delivery was awful. "Density level shows that you are in stage 4 a liver sclerosis, which is the final stage". He then shared with me that I needed to get in an MRI elastography. With the MRI I found out that I am in stage 4; however, I am compensated and not decompensated. Which I don't exactly still know what that means but I'm so researching. I have seen him three times and I still haven't been given any type of information in regards to what to expect, what's next, a diet plan, or even life expectancy. I have no idea how this evolves. I'm so sorry I'm rambling. Thank you so much for reaching out, I can't tell you how much I appreciate your time. 🌷 Jimi

@missi, I'm wondering whether your GI is collecting the information needed to make a diagnosis for the cause of your liver condition. When I was diagnosed, my GI had to do many tests then and consult with a liver specialist before a diagnosis was established. It seemed like forever! I had labs drawn every 4 months as he monitored me. In 2008, he sent me to the transplant center at UofKY where i was evaluated. I was later transferred to Mayo Rochester where I received a simultaneous liver and kidney transplant in 2009.

Here is a link to information about Liver Disease from Mayo Clinic Health Library:
- Liver Disease
https://www.mayoclinic.org/diseases-conditions/liver-problems/symptoms-causes/syc-20374502
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Jimi, You are among friends here. We all 'get it" and we all have felt the need to ramble and to clear our frustrations from our minds. I hope that you will find the information about diet and ways that you can take care of yourself while waiting to hear something from your doctor. I'll be back on line tomorrow.

Hello, I had the same initial notification. Got a phone call. Yikes! I am also decompensated. There is good news though. You can live a long time with cirrhosis. Get some diet advice from a nutritionist familiar with cirrhosis if you can. Be sure you are screened for liver cancer regularly. I go to Mayo Jax every 3 months. Hang in there.

First let me see thank you so much for sharing and for validating. I am so grateful that I found you all. How do I get screened for cancer?