Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
Interested in more discussions like this? Go to the Transplants Support Group.
@gaylea1 @racing212 as they say, hindsight is always 20/20. When I had the more serious issue, blood counts precariously low, my husband suggested sending me to MGH and the hospital here was very happy to oblige. I wish we had done the same with the HE episodes. They really did not understand them up here and most of the nurses treated me very poorly, and even the hospitalists were not very knowledgeable. Most of those admissions occurred in the year and a half before I had a diagnosis, but even afterward the treatment was not good.
Gaylea1. I love both meat and fish and never stopped enjoying them, except when I had HE. Then all I wanted was toast.
JK
@contentandwell I just couldn't face eating beef, chicken/turkey or fish prior to transplant and I still had severe HE episodes. Regardless of that I still think your advice is very good. I still have trouble eating meat but make up for it with alternative choices plus Boost or Ensure with extra protein.
@rosemary's such great advice! I was scheduled for PT twice a week at the transplant clinic where they documented everything. The therapists were also transplant clinic nurses and they were very encouraging. I started about 15 months pre-transplant.
@racing212 I also woke up in a different hospital a couple if times. Each had hepatologists but the hospital I ending up going to had the transplant unit/floor. Very disorientating, especially after HE episodes.
The dr goes to the hospital i was sent to....he's from Rochester mn.i go there to see him. They email him my information if and when i go to hospital
@racing212 when you say last October I presume you are referring to October 2018: not this just past October. If that doctor is not at a hospital that does not do transplants and does not have a hepatology department, he/she is probably not that familiar with your condition.
I live in NH and there are only two hepatologists in the state, both I believe at Dartmouth. There is no hospital in the state that does liver transplants. I was at a Manchester hospital for HE episodes and they really were not that knowledgeable. If I knew then what I know now I would never have gone there but the times that I did my husband just wanted to get me care quickly. One time with a more serious Pre-transplant issue the hospital in Manchester did get an ambulance to bring me to Mass General.
JK
Hi Rosemary,
Thank you so much for asking. I am doing well....almost 7 months post transplant without incident. Thanks again for all the useful info you provide on the website...much appreciated.
I've had episode of waking up 3 to 4 days later in a different hospital. That happened 3 times. The Dr's at one. Hospital told a friend that he didn't think i would make it to April. That was last October
I'm known to the staff here to.. I still am able work part time i go to a couple stores to walk
@racing212, I also live at a distance from Mayo. However, my local docs do coordinate with Mayo, and that gives me confidence that I get the best of care. I hope that that is the way it is with youur docs. I am sorry to hear about your hospitalization. Pre transplant. my hospital and ER visits were quite frequent, and I never got used to them, however I did (unfortunately) become well known to the staff there.
I sincerely hope that you will soon be match for an available organ. It is a matter of time, and speaking from my experience, the waiting can feel intolerable.
I want to emphasize the importance of eating healthy and remaining active prior to transplant. Your body will be better prepared for surgery and recovery will be easier. Are you able to eat and get some exercise?