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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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I don’t know if this warrants a “nice to meet you” or a “so sorry to meet you in this manner” but your story hits very close to home: I also had no idea I was sick. One weekend I was spending time in NYC with my childhood best friend; the next, I was in the hospital. The doctors had no idea what was wrong and I thought I had just caught the flu that had been going around the office. My diagnosis began with pneumonia and changed to autoimmune hepatitis, acute renal failure, respiratory failure, and acute liver failure throughout the course of one month. (Yes: one month.) I was hospitalized on April 5, 2019, and placed on the list May 5, 2019, with a MELD score of 39. It took multiple MRIs, CT scans, X-rays, ‘oscopys, IVs, blood tests, and 17 blood transfusions to arrive at those final conclusions. I had a liver transplant on May 10, 2019, with an understanding that I’d probably need both kidneys transplanted as well. I spent a few more weeks on dialysis post-transplant. Eleven months later, so far, so good!
It’s frightening to know that the physical I had one year before didn’t show anything. It’s frightening to be told “you have five days to live.” It’s heartbreaking to know that people stay on these lists for years and live in fear for years, yet I spent five days on the list. It was surreal to be told, “The good news is, you’re at the top of the list; the bad news is, you’re at the top of the list.” I feel grateful and guilty; happy and sad; but above all, feel blessed.
Heavy but true. I know you’re 4 months out. I promise you it will get easier.
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4 Reactions@jsw. How fortunate you were to have something you thought might be the flu land you in the hospital. That must have been quite a nightmare for you. I am glad that you are well now. As with @jacqualin, it’s amazing to me that you must have a fairly severe problem for a long time for your MELD to be so high.
Those of us with longer waits have not had such an acute problem. I was actually feeling pretty good through my wait on most days, until the last 4-6 weeks.
JK
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3 ReactionsWow! You're right...your story hits so close to home! Amazing!! I'm so glad to hear you're doing well!! Almost at your 1 year mark! Thant's exciting! Congratulations!!
Are you still on dialysis, or after the few weeks post-transplant did your kidneys go back to normal function? I did dialysis 6 times after my discharge from the hospital. I had had routine blood work in Jan 6, 2020, and it came back pretty good...I mean, nothing crazy, so to be so sick on Jan 20 was a mind blow!!
I too feel grateful, and at the same time knowing how many others haven't been as fortunate to receive a transplant! We are blessed!! I'm so glad you reached out and shared your story with me...This is a "nice to meet you"!!
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2 Reactions@contentandwell
I don't remember what your Meld was during your waiting time. Mine has been holding around 8 for 2 years. At my last visit my Dr. told me not to get complacent as it could go up quickly.
So...I wait! Feels like pregnancy.....even the bloat..lol
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1 ReactionMine (Melsd score) went up every 3 months or so. Went in at 25 then 27 then jumped to 30 in a period of 8 months. It got scary near the end but got my transplant in the nick of time.
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3 Reactions@jeanne5009, I also used to feel like I was pregnant, and overdue while I waited. Everytime that I had a paracentesis to drain the fluids, I felt normal for a few days though.
I hope that your doctor will call you sooner rather than later. The hard truth is that there is absolutely no way to know when that will be. Are you ready? Is your bag packed? Here is some advice from all of your friends on Connect -
-Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
-Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/
As you have already learned, We are going to answer any question that you want to add to those discussions.
Hugs and Hope.
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3 Reactions@jeanne5009 My MELD started at around 15 I think, in July 2015. What I remember better was that after doing an MRI and discovering malignant lesions it went up quickly to 18. Then it generally went up by 2 or 3 points I think it was, every 3 months. By the summer of 2016 I was at MELD 28. I was doing OK and not feeling too unwell, except for the tremendous fluid retention that I suddenly developed, most of it in September.
I got the call on September 22 despite my MELD not being over 30 which was surprising since MGH at that time was generally transplanting in the low 30s. I almost contacted Mayo to get on their list because they told me they thought they could transplant me specifically at 28! I am happy that I was able to stay at MGH since it's just about 55 miles down the highway.
It's sort of unusual that I was feeling so well other than the fluid because when the transplant occurred at 12:30 A.M. and they dissected my old liver it was pretty much spent! So, I was very fortunate that I got the call when I did.
I must have just been an excellent match for the young woman who was my donor. She and I were of very similar size and had to be the same blood type, B+. When they called they said they might be splitting the liver with part of it going for a pediatric transplant but that did not turn out to be a good match apparently because I got the whole liver.
JK
I had a liver transplant at Mayo Phoenix 6-2018. I lost about 65 lbs. during the first year and became concerned with my rapid weight loss. I began taking medical marijuana edibles to help stimulate my appetite. I researched this treatment and discovered that the cannabis can increase the Everolimus levels three fold. That would raise the Everolimus to a dangerous level so I immediately stopped taking the edibles to maintain safe therapeutic levels. I would like to caution other transplant patients to avoid this potentially dangerous combination. I would be very careful with any alternative treatments such as CBD oils or any other supplements without your Doctor’s approval. We have come too far to make mistakes with herbal supplements. Take care and stay safe with this SARS-CoV-2 Pandemic.
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2 Reactions@jdlogan65, Thank you for sharing your experience and for encouraging all of us to be aware of the dangers of adding unapproved substances that can interfere with our medicines and ultimately with our health.
How are you doing now? Has your weight picked up? Are your labs and Everolimus levels satisfactory now?
@jdlogan65 This is so true, we have to be very careful of anything that we take such as CBD and herbals. I always check with my transplant team, they told me not to take CBD but as a topical it was OK, and I check with them when anything is prescribed for me by another doctor. It really is vital to do that, as you learned.
JK