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Liver transplant - Let's support each other
Transplants | Last Active: Dec 15, 2024 | Replies (1623)Comment receiving replies
When I was diagnosed with liver disease, it was when I vomited frank blood in a large volume in the middle of the night on May16th, 2007. ER then admitted to ICU. Was informed that I had cirrhosis stage 4 and would require a liver transplant. WHAM ! Just like that. The hepatologists said that I was Hep C positive and had mostly acquired it 20-30 years ago and had no symptoms. My MELD score stayed 9-12 for about a year. Was hospitalized several times for bleeding esophageal varices with EGDs performed at regular intervals with some banding. Normal bilirubin is 0.3-1.0. The docs at Mayo said that they had never operated on someone with such a high level. I was placed on the kidney transplant waiting list last September. The nephrologist wanted me to be ready for dialysis just in case. I had an AV fistula created which quickly collapsed and failed. Next step would be a graft if needed. I am surprised that the only few people that have stepped up to the plate to be a living donor have medical issues that would disqualify them. Except for my husband, but that would run into caregiver issues post op. I admit that it has been frustrating, as you have to be more sick before you can feel better. That is where I am now. Support is so invaluable right now. I am now a medically retired RN who worked with renal patients for 4 years. The thought of dialysis scares me and I am terrified that I will need it...…. One thing that I have learned on this journey is that you need to advocate for yourself with the medical team.
Replies to "When I was diagnosed with liver disease, it was when I vomited frank blood in a..."
@joanaiken You have surely been through a lot with two liver transplants and now needing a kidney transplant. Did the immunosuppressants cause the need for a kidney transplant? I used to participate in a different liver group and I recall one person saying that their transplant center had told them that eventually they would probably need a kidney transplant due to the immunosuppressants. My transplant center, Mass General in Boston, has been very pro-active. When my creatinine went up they changed my immunosuppressant. They really stay on top of everything and tend to be conservative, which I like.
I know the thought of dialysis is daunting but I have known a number of people who have led very good lives while having dialysis a number of days a week. My niece's husband was on dialysis for about five years. They used to travel within the country and set up dialysis ahead of time at a hospital close to where they would be. He finally got his new kidney last August.
I hope your wait will not be as long as his was.
Best hope is that you do find someone who will be a live donor for you. If that doesn't happen I hope your wait isn't too long for a cadaver kidney.
You are fortunate to have your husband there with you to be your caretaker. I had the same good fortune. Our son and daughter live out of state so they were here only in spirit and for occasional visits.
Being a retired RN does give you a better appreciation for all of this, but also probably makes you more conscious of which nurses are great and which are not so great. When I was in my local hospital a few times pre-transplant for HE episodes, most of the nurses were "not so great". When I was in Mass General every nurse I had was great.
Hugs, JK
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@joanaiken
Yes..yes..yes. Advocate for yourself if you are able...if not educate all caregivers....this is hard because some caregivers are better for certain things. Not everyone can comprehend the medical aspects...especially in an emergency.....