Need a liver and information on what to do.

Amanda89
Thank you for your post. Since Sept 2017, when they told you you needed a liver transplant, did your doctor do regular monthly labs. Where you assigned a Social worker/ therapist back then. What occurred during 9/17?and now. Was there any follow up or discussion with your doctor about a transplant (and Meld score). I learned in Jan 2019 I had cirrhosis and end stage liver disease due to drinking. My original Meld was 26 and I was quite ill. I have been getting weekly UA drug alcohol tests and I go to AA as well as see my alcohol counselor. My doctor keeps a close eye on me and I have monthly labs done. Although I have been feeling better it’s only a matter of time before my health de compensates and I get listed on the transplant list. I will say my treatment team has been very good and thorough. I would ask your doctor for latest labs, liver fiction, and liver sonogram. Let us know how you are doing. I know that all of us who need a liver are worried and apprehensive. We have to rely on our treatment team to monitor our condition.
John S.
Annapolis MD

@amanda89, Welcome to Connect. I am pleased to meet you, and I am sorry to hear about your current health issues. I know how frightened you must be feeling because I am a transplant recipient, and can remember my own experiences while I was sick and waiting.

So - it sounds like you are waiting to be evaluated to be listed (eligible) for a liver transplant. It is a normal routine to have an annual check-up. And for transplant, it is always a thorough work-up. So I am confident that your current team is looking out for your best interest and future care. I am please that you have already met John- @johnshaw who has shared his experience with you. You will quickly learn that we all have different experiences. I invite you to ask any questions that you have. You are not alone.

Here are links I want to share with you. Each one covers a different aspect of the pre-transplant journey.
https://connect.mayoclinic.org/page/transplant/newsfeed-post/eligibility-for-liver-or-kidney-transplant/

@amanda89, Does your team know about your ER visits? Are they aware of your current situation?

I did all the research before my liver transplant. I researched the three transplant hospitals near my location in CA. I became aware of all the symptoms of end stage liver disease. My sister in law who worked a Cedar Sinai in the insurance billing department shared with me that people with a Meld of 35 to 40 are first priority. On the list or not. In my case I was not on the list until I was hospitalized at meld 40 due to septicemia. At that point I was inter hospital transferred to Cedar Sinia in West Los Angeles. My local hospital already had my records from three visits for related procedures. By luck, A bed opened up at the transplant hospital of my choice. I was end stage for 6 months and so my healing time after the transplant took less time. Take care of your self and try to walk every day. Eat 6 very small portions every day. I took milk thistle every day and the water pills. I was pretty healthy all things considered when I went into surgery. I was told by my doctor what to expect and all happened exactly as predicted. The only difference is that Septacimia in my case was cause by food poisoning instead of other means. Good luck.

Correction. I received transplant info. Via UCLA.