Liver transplant experiences

So... here’s the deal. It’s been about three months since my liver transplant back on January 6th, 2011. I was diagnosed with autoimmune hepatitis when I was just 15, so after eight long years, I finally got a new liver. They did a split liver transplant at Wells Fargo, and I received the left lobe. My treatment and recovery in the hospital lasted until March 13th, which felt like an eternity compared to some of the other patients. I dealt with some nasty complications from ascites—fluid buildup in my abdomen—and even now I’m still fighting it with diuretics, though the swelling is definitely going down and the ultrasound confirmed it... Then, just a month after the transplant, they had to go back in and operate on my bile ducts twice because they ruptured in several places. Now that I’m finally home—only about 20 days out—I’m heading back for weekly checkups. Unfortunately, at my last appointment, the doctor told me my blood work wasn't looking great. The biggest worry is my GGT levels; it was high before at 457, but now it's jumped to 641, which is just terrifying... I'm honestly scared sick because he said it might be nothing, but there's a chance it's an issue with the bile ducts again, which could mean getting a stent put in or even more surgery. And there's even this tiny, scary possibility—though it's super rare—that because of the autoimmune stuff, the new liver could catch hepatitis again. Whatever happens, I'm just praying it's nothing, because I really don't want to go back to the hospital. Especially since I actually feel pretty good; I'm walking around, eating as much as I can (I dropped down to a measly 46 kg, so I'm trying to bulk back up), and taking walks outside, obviously always wearing a mask... I just want to get back to a normal life as soon as possible! I have another follow-up this Thursday with an ultrasound and Doppler, and that’s when I’ll find out what’s going on with those lab results. I'm terrified, but I'm trying to stay positive and hope for the best...🙂
To anyone else who has gone through a liver transplant, I am begging you to please share your experiences with me and anyone else waiting for their turn. Any info at all regarding treatment, recovery, diet, complications, sex life, how much physical exertion is allowed, or literally anything else would be so incredibly helpful...

Michelle Davis said:So... about three months ago (Jan 6, 2011)...

I had a liver transplant. I was diagnosed with autoimmune hepatitis when I was 15, and after eight years, I finally got a new liver. At Wells Fargo Medical Center, they did a split liver donation, and I received the left lobe. My treatment and recovery at the hospital lasted until March 13, 2011—it felt like a long time compared to the other patients. I dealt with complications from fluid buildup in my abdomen, which I'm still managing with diuretics; the swelling is visibly going down, and the ultrasound confirmed it. Then, just a month after the transplant, I had to go back into surgery twice because my bile ducts ruptured in several places. Now that I'm finally home—it's only been 20 days—I'm going in for checkups every single week. Unfortunately, at my last appointment, the doctor told me my blood work wasn't looking great. The GGT levels are what worry me most; they were high at 457 before, but now they've jumped to 641, which is terrifying! I'm so scared because he said it might be nothing, but it could also mean there's an issue with the bile ducts again, which might require a stent or even more surgery. And there's even a small chance—though rare—that because of the autoimmune disease, the liver could face hepatitis issues again. Regardless, I just hope it’s nothing, because I don't want to go back to the hospital. Especially since I feel so good... I can walk, I'm eating as much as I can (I lost so much weight, down to only 101 lbs, but I'm trying to gain it back), and I love being out walking, though always wearing a mask. I just want to live a normal life again! I have another follow-up this Thursday with an ultrasound and Doppler, and then I'll know what those blood results actually mean. I'm terrified, but I'm trying to stay positive and hope everything turns out okay!🙂
To anyone else who has had a liver transplant, please, I'm asking from the bottom of my heart, share your experiences with me and anyone else waiting for their turn. Any info on treatment, recovery, diet, complications, sex life, how much physical strain is allowed, or anything else would be so incredibly helpful.

I really hope your liver condition has improved, especially since those test results weren't great.
My dad also received a liver transplant at Wells Fargo Medical Center back in 2009.
He spent 30 days in the hospital after the transplant and had a few minor setbacks, like arrhythmia and high blood sugar.
For the first year, he went in for checkups every two or three weeks. Now, he just goes once a year. If there's anything you need to know, I can try to help in plain English... just ask.

Best wishes, stay strong!!

Michelle Davis said:Look... I had my liver transplant about three months ago (back on January 6th, 2011). They diagnosed me with autoimmune hepatitis when I was just 15, and after eight years of fighting, I finally got a new liver. At Wells Fargo Medical Center, they did a split liver donation, and I received the left lobe. My treatment and recovery in the hospital lasted until March 13th—which felt like an eternity given how many other patients were there. I dealt with some nasty complications involving ascites (fluid buildup in my abdomen), and even now, I’m still fighting that with diuretics. Thankfully, the bloating and fluid are visibly going down, and the ultrasound confirmed it. Then, just a month after the transplant, I had to go back under the knife twice because my bile ducts ruptured in several places. Now that I've finally made it home—it took 20 days just to get discharged—I'm heading in for weekly checkups. Unfortunately, at my last appointment, the doctor told me my blood work wasn't looking great. The biggest worry is my GGT levels; they were already high at 457, and now they've spiked to 641! That is terrifyingly high. I'm scared sick because he said it might be nothing, but it could also mean there's another issue with the bile ducts, which might require a stent or even more surgery. And there's even this tiny, terrifying possibility—though it's incredibly rare—that because of my autoimmune history, the new liver could develop hepatitis again. Regardless, I am praying to God it's nothing, because I simply cannot face another hospital stay. Especially since I actually feel pretty good right now! I'm walking, I'm eating as much as I can (I dropped down to just 101 lbs, so I'm trying hard to put the weight back on), and I'm out for walks, though obviously always wearing a mask. I just want to start living a normal life again! I have another follow-up this Thursday, along with an ultrasound and Doppler, and then I'll know what those blood results actually mean. I am terrified, but I'm trying to stay positive and hope for the best!🙂
To anyone else who has gone through a liver transplant: please, I am begging you, share your experiences with me and anyone else waiting for their turn. Any bit of info regarding treatment, recovery, diet, complications, sex life, physical limits, or anything else whatsoever would be beyond helpful.

Post them or take pictures of your lab results.
The most important things are the DIAGNOSES, the THERAPY, and the TESTS.
Without concrete details, we aren't getting anywhere.

I had my liver transplanted about eight years ago, and honestly, I haven't run into any issues since then... at first, during those early two years, my liver numbers were a little bit high, but for quite a long time now, they've been right within the normal range. Only that GGT stays a tiny bit above the limit, but my doctors aren't really worried about it....
So, I have this one question that's been bugging me for a while. I heard once that a transplanted organ has a sort of expiration date, I guess... so I was wondering if that's actually true? Like, can one organ—my liver, in this case—last with me all the way until I'm old, or am I looking at another transplant down the road? I'm only 28 right now, after all...

Karen Williams59 said:I had a liver transplant eight years ago, and honestly, I haven’t had any issues since then... In those first two years, my liver enzymes were running a bit high, but for a long time now, everything has been within the normal range. The only thing is my GGT stays slightly above the limit, but my doctors aren't even worried about it....
Now, there's one question that’s been eating at me for a while. I heard once that a transplanted organ has an expiration date—let's call it that... and I don't know if that's actually true. Can one organ, in this case a liver, really serve me until I'm old, or am I looking at another transplant down the road? I'm only 28 right now...

Anything is possible. The truth is, there isn't a second option, and you simply can't predict what will happen.

Is it actually possible for a 77-year-old to be put on a liver transplant waiting list here in the US?

My son just got put on the liver transplant waiting list. Please, if you have any advice or experiences to share, reach out via PM. I'd really appreciate it.

Go ahead and drop your questions here. I'm sure someone will jump in if they actually know what they're talking about. 🙂

Honestly, I’m just looking to sit down and talk with someone who’s actually been through this—someone with real-world, boots-on-the-ground experience rather than just a doctor reading from a textbook. I was really hoping someone would reach out, but so far... nothing.

It’s not even that I have a list of specific questions ready to go—I don't really know what I'd even ask—because, truth be told, I already know quite a bit about the situation myself.

What I really need is just a conversation... and a little bit of hope.

Hey,

I was wondering how you actually get on the liver transplant list here in the States? Is there some kind of official protocol everyone follows? I assume doctors from smaller hospitals just send referrals over to Washington, D.C.? Or do you basically have to be Bob Dylan to actually land a liver... Specifically looking at a 53-year-old woman, no connections, no special favors, nothing... What are the odds for someone like that? 😢

Susan Smith said:Hey there,

I'm trying to wrap my head around how someone actually gets on the liver transplant list here in the US. Is there an actual official protocol for this? I assume doctors from smaller regional hospitals just send referrals over to the major centers in Washington, D.C.? Or do you seriously have to be Bob Dylan to get priority for a liver? Specifically, we're looking at a 53-year-old woman with zero connections, no influence, nothing... What kind of chances are we actually looking at? 😢

Pretty good.
I'd guess the gastroenterologists working directly at the transplant center handle the listings.
Word is the wait time is about 6 weeks.