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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?
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Thank you Rosemary! I'm doing alright...just setting up and going to televisits or in person visits to the specialists the team requested I get established with. Blood sugars are on a roller coaster right now though so we're working on that. With Lactulose, however, toilet paper is essential and I haven't found any online or in stores here in weeks. When it is stocked it sells out within 5-10 minutes
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1 ReactionHow sweet of you Rosemary to be thinking of others! My son, with PSC & listed for transplant, is holding his own. Staying positive & strong. He recently transferred his care to another transplant center. It was a bit of a process but it is complete & official as of last week. His wait time will follow him to the new center. We continue our search for a living donor & are extremely excited to be working with his wonderfully amazing new team of care providers. Wishing all a healthy, happy & blessed Easter season. May we all be safe & find peace in our pandemic isolation:-)
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2 ReactionsHi. Thank you ! To update, I finally had an ERCP on March 18th. Five stents were placed in the bile ducts and I believe that has made a difference. Initially my whole GI tract was off kilter. I blame it on the increased bile being released. I am now back to baseline "new reality". Good news.
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3 ReactionsHi @rosemarya and all! Things are staying stable here. This is doing great so far as past transplant is going. It will be 2 years for him on July 7. I have been furloughed from work so both of us are able to stay home. We order our groceries online and pick them up. We order meals to go once a week and do curbside pickup. Its working for us!
Tim's dementia/Alzheimer's is staying stable since his diagnosis last October. I'm hoping it stays this way for sometime. Fingers crossed and prayers said.
Easter Blessings to all,
JoDee
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3 ReactionsI'm doing fairly well. I was in hospital for a week with urinary track infection
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2 ReactionsMy liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.
@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?
@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?
@joanaiken, I want to say, Hi.
@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?
@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?
@beckyy39, I am thinking of you as you proceed one day at a time.
@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?
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6 ReactionsOne advantage of the numbness is that my daily insulin shots can be administered pain free
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2 Reactions@benlam11 Your story is a bit similar to mine, but I did finally get a diagnosis up here. The first PCP called me on the phone and told me she thought I had Alzheimer’s. I quickly switched PCPs. Due to the HE episodes I was sent to a neurologist because the PCP thought I had a neurological problem. The neurologist was the one who suggested a liver problem, that was a year and four months after my first HE episode. I got an appointment with a hepatologist at Mass General as soon as possible. They were wonderful there, my experience was similar to yours at Mayo – they are #1 and #2 in the country. The hepatologist put me on xifaxan and for a long time I only needed that, no lactulose. I now go to Mass General for everything except my PCP. I would go there for that too but I figure I should have him closer. During the day it can take 2 hours to get to Boston.
@khh as I said above, the PCP thought it was Alzheimer’s. When I finally did get the cirrhosis diagnosis I realized how ridiculous it was that no one put two and two together before that. I had so many telltale symptoms – declining platelet counts, shaky hands, cramps, and the big red flag, episodes of confusion and irrationality.
Please insist on seeing a doctor. More than likely you will be advised to have any immunizations now, pre-transplant, before you are on immunosuppressants. Some are fine after, like pneumonia, but some are not. MGH has not approved the shingles vaccine. It is not a live vaccine but they are concerned because there is a protein in it that increases your immunity.
Hi @brianna Welcome to Connect. I was up and walking by the next day. A nurse would take me for walks and when my husband visited we would circle around the unit. They encouraged me to do so.
I hope all goes well with your evaluation. I found it draining but it has to be done.
@manuelhsilva Welcome to Connect. If you don’t mind sharing, which hospital in Boston were you evaluated at? When I was at MGH they did not have an age restriction, it depended on the health of the candidate. I was two days short of 69 when I had my transplant. At Mass General they did tell me that the Boston region often transplants at a higher MELD due to such high demand and they suggested looking into Florida and Indiana. I’m not sure where in Indiana, nor did they specify where in FL. I did look into Mayo in MN and was considering them because they told me they would probably be able to transplant me at MELD 28 and at that point MGH was saying in the 30s. Thankfully they did come through for me at MELD 28 though. At that point I was going downhill fast and my MELD was about to be increased.
@tjgisewhite Four days, that’s phenomenal! I was in for 6 but my recovery was amazing. By the time I left the hospital I had very little discomfort and my incision had stopped hurting. When I went for my first post-transplant appointment, two weeks after the transplant, they were amazed that I looked so good. I believe that losing weight and exercising before the transplant really helped me to recover faster. I did both of those thinking it would help.
JK
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1 ReactionI expected the same after my June 2019 Liver and Kidney transplant. After 6 months my feeling started to return and now after 9 months, it's over 80% back .I'm a 69 year old male - so your healing process may be much faster. My Liver has never had any problems - my kidney has minor problems. I lost 2 years fighting through this and it was worth the journey.
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2 Reactions@manuelhsilva, I think that you meant this reply for me, @rosemarya. That's ok, it can get confusing.
You mentioned Boston and Mayo JAX, are you double listed?
How long have you been on the transplant list? You say no major issues, that is good to hear.
What questions do you have about transplant? I will try to help you.