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Cirrhosis of the Liver: What to expect when waiting for a transplant?
Hello - This is my first time to do this; however, I'm looking for some possible advice. I am 54 and have always been very healthy. I started feeling bad back at the end of May when I decided to go to an Urgent Care center to be looked at. They took blood and when I received the results, it said that my Liver levels were in critical state and to go see a Dr. I did. They took more blood, did an Ultra Sound (which was normal), did a CT scan and did a Biopsy. The results: Stage 4 cirrhosis of the Liver. They have no explanation as to how I got it. I don't drink, it's not hereditary and I'm not over weight. It's now November. They referred me down to a larger University Hospital to see a better specialist; however, I cannot get in until Dec. 8th! I am scared! How long can I last waiting to be seen? What should I do in the mean time? I did some reading and I have cut almost everything out of my diet and with that, I am feeling a whole lot better but I know I still need a Transplant and need to get in. I'm (and my husband & family) are going crazy waiting. Would really appreciate and and all help. Thank you!
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Hello, I have my first appointment with a Liver Specialist (Hepatology), after being admitted to Hospital 7 times this year. I really would like a Liver Transplant as the pain is coming to frequent. Am I being silly ?
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1 ReactionHi @hellolance, Welcome to Connect. I don't think it's ever silly to ask health questions. If I had been admitted to the hospital 7 times this year, I would definitely be seeking some answers. You might want to join the following discussion to learn what others have shared on the same topic.
--- Cirrhosis of the Liver: https://connect.mayoclinic.org/discussion/cirrhosis-of-the-liver-2/
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1 ReactionThanks for sharing, I have been on a mission for answers and have researched for sometime. I guess what I’m asking or seeking is that I’m terrified that I would be declined however I’ve done everything by the book.
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2 ReactionsMeaning given approval for the liver transplant.
@hellolance, welcome. I moved your questions about liver transplant due to cirrhosis of the liver to this existing discussion in the Transplant support group:
- Cirrhosis of the Liver: Whta to expect when waiting for a transplant? https://connect.mayoclinic.org/discussion/cirrhosis-of-the-liver-2/
I did this so you can connect with other members like @rosemarya @mylifebe4u @jazzmanfla @marinab @darrindaeddins1981 @cs1964 @firecat @arqui02000 @ajdo129 @parrot53 @katebw @sandif @mstorch82 @trantplant2022 @crystalfaye @jackie421blfdgurl and many others who like you have been diagnosed with cirrhosis. Some have had a transplant, others not or not yet.
Lance, I can imagine being concerned about being declined for transplant. It sounds like you're doing all the right things. What questions do you have for the group?
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2 Reactions@hellolance I want to respond as it feels like yesterday I was newly sick and wondering about liver transplant. But this was in 2021, and by years end I had a liver transplant. So it’s been over 1.5 years since surgery. In 2021, before I went in for my transplant, I was hospitalized about 13 times not including 3 ED visits that did not result in inpatient. It all related to my liver failure from cirrhosis which seemed to come on fast and furiously with no clear cause- it’s thought that it’s autoimmune. I am now 55 and I feel very well but when I was sick I couldn’t imagine that I’d ever feel well again much less live to see my daughter graduate college (I did! She did!). I found the process to be intimidating and given how sick I was I couldn’t imagine how all the stars would align in time for me to live. I was at first concerned that my liver team to be worried I had a problem with alcohol because I discovered I was sick when I had an episode of confusion while driving and police accused me of being intoxicated (I wasn’t).
My hospitalizations at first were due to hepatic encephalopathy which let to extreme and unsafe confusion (I called this “the crazies”) or for recurrent fevers and other odd symptoms.
When you have your appointment, it’s perfectly acceptable for you to ask what your treatment options are, including transplant. If you don’t know your MELD score, ask for this to be calculated as it’s an indicator of how sick you are (though for some with something called PSC that’s a complicated issue). Perhaps ask about medications you are taking/should be taking, and what they are for. My favorite way of getting true Dr advice is to ask what they’d recommend for their sibling or spouse or parent?
If you use drugs or alcohol, ask about what their protocol is- lots of transplant centers want 6 months of sobriety especially for people who imbibe a lot. If this relates to you, don’t be shy about asking and sharing as this is your body, your life, and you deserve clarity and very good care. Best of luck and keep reaching out.
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5 ReactionsJaxpilot you and me both, I have never experienced something so scary to me and my family. I hope it never happens again. I am 2yrs./7mths. LTP.
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1 Reaction@jaxpilot, Your float on the raft sounds wonderful. You definitely have learned to enjoy life again! I think you have a great ear for music and it is good to hear that you are exposing the younger generation to it. I hope that you will keep sharing the good sounds for others to enjoy.
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Jax, and all, Has your transplant team advised you about the need for sun protection because we are more susceptible to skin cancer?
Do you want to see how other members are managing sun protection while resuming their healthy new transplant lives? Here are 2 links:
- Anyone have tips on sun protection?
https://connect.mayoclinic.org/discussion/anyone-have-tips-on-sun-protection/
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I can't believe that in Sep 16, 2018, I shared a photo of me in some of the same sun protective clothing that I continue to use in 2023!
Why don't you click on the link to add your tip, hint, question, or maybe a photo of your favorite sun protection habit?
@hellolance, My transplant was 14 years ago and I assure you that you are not being silly for wondering about the future and the "What if's". The uncertainty is a reality for patients like us. I'm happy that you have joined Connect because we understand what you are going thru. I hope that you will meet with your liver specialist soon and find out more about your options.
When I was referred to the liver department for a consult about liver transplant, my husband attended with me as an extra set of ears. I had compiled a list of questions and concerns in a notebook where I (or he) jotted down the answers). Have you thought about making a list of your questions to ask the doctor? I encourage you to begin one.
How can we help as you prepare for your appointment? Do you have any questions for us? When is the appointment?
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2 ReactionsHi Rose,
What a amazing story - well done. Do you feel like your life has had much of a change with your circumstances if your happy to share.
I have met with the Liver Specialist and i have bee consulted - it brought much clarity and was easy to understand the next process. As i am one of intuition and positivity no matter the subject it most useful. I have been sober on and off for the last 25 years and understand having that track record will draw eye brows but i'm confident. My meldstrom percentage is 21% so that means my survival rate in New Zealand.