Amount of time to see Transplant Team

After finding elevated liver enzymes and being diagnosed with metapneumovirus, I spent 2 weeks in NY Presbyterian in June 2024. A biopsy of my liver determined I had 15-20% necrosis in zone 3. No cause was found at that time but I was released when a course of doxycycline brought my liver enzymes down to almost completely normal.

Unfortunately, follow up blood tests showed my enzymes shot back up after the doxycycline was completed. I was readmitted to NY Presbyterian in late July and my condition continued to deteriorate as countless tests were performed to try and find the cause of my acute liver failure. The Doctors were amazing in completing all of the tests and getting me on the list in 2 weeks. It really felt like a full court press. My wife thinks my first score was 23 but before the transplant it was very close to the maximum. After the transplant, they performed a battery of tests on my liver but were unable to identify what happened to it definitively. Their best guess is some type of infection. So you can get the work up done in 2 weeks.

My daughter has had alcoholic cirrhosis for several years. She has two major hernias that need repair, but her GI team is referring her to the transplant surgery team, because the surgery is too risky, and they think it would be best done by liver surgeons, possibly in combination with a transplant. It's been a couple of weeks since her doctor sent a referral request. She has been sent for some specialized testing, but we haven't heard anything about scheduling an appointment yet. My daughter is no where near being eligible for being put on the transplant list, because she has not been off alcohol completely for 6 months. She needs the hernia surgery done though. Don't know if they will go ahead with that surgery. The waiting is nervewracking.

@lylii
I agree that waiting is hard. I read that your daughter's GI team has made a referral to the transplant surgical team for their input regarding her current situation. Maybe you will hear something soon.

In the meantime, how is your daughter getting along during this time - When will she be eligible for pre transppant evaluatiion?

@jimb43581921 my husband seemed to be stable in January but he got a bad intestinal and stomach bug which caused bleeding hemmeroids which caused him to need a hemmeroidectomy. After that his liver hit the skids and took it over the edge..

I am concerned no one will get back to me. I ask questions and they never get answers. I called and talked to a secretary and she was going to look into the issue? I am concerned as to my questions are no being answered. It stated 24-48 business hours and it has been weeks.

@artsy0062 When my liver issues first appeared, my wife and sister forced me to go to the emergency room at NY Presbyterian. Acting quickly saved my life.

@artsy0062
It is appropriate for you to contact your husband's primary care doctor when problems arise and you need assistance. If the situation requires intervention or advice from specialist, the PCP can make that happen when necessary.
Who is treating or monitoring your husband's health durin this extended waiting time?