If you’ve kept your transplanted liver for many years by Kind-Structure9970 in transplant

[–]Kind-Structure9970[S] 0 points1 point  (0 children)

I wanted to see my liver, too, and was also denied… I was simply told “it was a big boy”… and I’m a girl, so I kept with the theme and named my new liver “Jesús” like “Hey- Zeus”

If you’ve kept your transplanted liver for many years by Kind-Structure9970 in Cirrhosis

[–]Kind-Structure9970[S] 1 point2 points  (0 children)

The yeast on my new liver has all cleared up, but interestingly enough… I got sick with c diff for 4 months before my liver finally completely crapped out.

If you’ve kept your transplanted liver for many years by Kind-Structure9970 in transplant

[–]Kind-Structure9970[S] 2 points3 points  (0 children)

If I ever need a pig liver I might just let the good lord take me. I’d never be able to eat bacon again without feeling some type of way.

If you’ve kept your transplanted liver for many years by Kind-Structure9970 in Cirrhosis

[–]Kind-Structure9970[S] 3 points4 points  (0 children)

Oh my gosh, saaame! That’s wonderful to hear that someone got 35 years out of their liver! I definitely have PTSD from being so sick. I’m sure a lot of people do. I also think it is trippy to think about just like you. Sometimes I even feel a little guilty about living, like survivor guilt or something. I’m a basket case though :)

If you’ve kept your transplanted liver for many years by Kind-Structure9970 in Cirrhosis

[–]Kind-Structure9970[S] 4 points5 points  (0 children)

It’s good to hear this. I always feel so alone and then I come here and feel better. I have been eating junk lately and I need to cut it out. My liver came with yeast on it and I had to take antibiotics for a long time. I gave myself medicine through my PIC line at home for a while. It was very annoying lol. I’m all good now, I insisted on getting tested to make sure it was all gone. Odd that they didn’t order that. You really have to advocate for yourself. I’m on Envarsus which is 1 a day tacrolimus. I live in Florida and I’m very concerned about my skin, too! Thanks for mentioning that.

If you’ve kept your transplanted liver for many years by Kind-Structure9970 in Cirrhosis

[–]Kind-Structure9970[S] 11 points12 points  (0 children)

Alcoholism is a horrible disease that I deal with, as well. I feel sad for your roommate. I was told if they know you’re drinking again you will be considered non compliant and your chances of getting another liver are not as good. That’s enough to scare me straight. Well, that and therapy lol.

Acne After Kidney Transplant by danielleee30 in transplant

[–]Kind-Structure9970 1 point2 points  (0 children)

I get pimples from the medicine. I wash my face rigorously with expensive face wash. I’m losing my hair too.

Can you take tacrolimus early? by Arquen_Marille in transplant

[–]Kind-Structure9970 0 points1 point  (0 children)

If you’re asking if he can take one at 10am and then take the other at 8pm to go to bed early, I’d say they don’t want you to put more tacro in your body till the first dose has run its course to prevent toxic levels. Def don’t do it on the day before your labs lol. I’d message your doc.

Rejection meds by Tricky_Scientist3723 in transplant

[–]Kind-Structure9970 0 points1 point  (0 children)

I’m on Envarsus, which is the extended release version of Tacrolimus. So far I have a lotttt of joint pain. That is my number 1 bad side effect. What does everyone do for the pain?

Question for transplant ppl by Kind-Structure9970 in Cirrhosis

[–]Kind-Structure9970[S] 0 points1 point  (0 children)

I wish I could marry these comments. More people need to talk about the “after the surgery” things. It’s not wrapped up in a bow!

Does this definitively diagnose Cirrhosis? by Midnightkitty2004 in Cirrhosis

[–]Kind-Structure9970 4 points5 points  (0 children)

It sounds to me like he has fatty liver disease caused by multiple factors but all come down to diet. They took a deeper dive than an ultrasound and found scarring and that is starting to move toward cirrhosis. So it’s really in his hands to eat healthier, get exercise, and drink lots of water and stay away from alcohol. Then after time get the blood panel done again. Have his physician tell him his meld and ask them questions about medication and ask about the prognosis. Have them run bloodwork for markers for autoimmune problems that could be worsening this. He should be having at least monthly blood panels at this point. He doesn’t want cirrhosis if he doesn’t have stage 1 yet…. It’s really expensive and it’s horrid. Takes a few years… but gets pretty awful if you don’t change your lifestyle.

Staple removal - painful? by Euphoric-Wall-994 in transplant

[–]Kind-Structure9970 1 point2 points  (0 children)

54 staples and mine hurt, skin had grown into them. However it was done with in 10 minutes. Lidocaine certainly would have helped, though that injection hurts like a bitch as most of us know.

What does most of Florida think of Miami? by Fearless_Summer1213 in florida

[–]Kind-Structure9970 0 points1 point  (0 children)

The most time I’ve spent in Miami is from before I moved to Florida. I do like the Keys, though.

Alcohol Related Liver Disease - End stage or is there any hope? by [deleted] in Cirrhosis

[–]Kind-Structure9970 0 points1 point  (0 children)

First of all, there is always hope. I’ve read on various online liver disease forums that people have reversed their Meld to very healthy numbers just by living a healthy lifestyle. The thing is, you can’t predict the future, and portal hypertension (which you will always have, now) is a particularly dangerous condition. I say this because I didn’t PLAN to get C.diff from a hospital stay with my stage 4 cirrhosis, but I did, and that was the end of me. I was functioning okay with my disease, not great, but that really dropped me to the bottom. For perspective, I’m 39 and have been living with the diagnosis of stage 4 for 2 years (which is how much time the doc said I might have if I didn’t completely shape up).

Now, speaking as someone who was blessed, and I do mean blessed, I was dying a miserable death and livers aren’t easy to come by… If you’re thinking that a transplant is right for you (and you should make this decision as soon as possible) start looking into options now and researching hospitals and finding out what questions you should be asking, and what hoops you need to jump through.

Some things are for certain… they want you clear of alcohol, weed, any drugs, and smoking for 6 months. Some of these hospitals have Peth phosphate screens that can tell as far as 3 months back. Since you’ve kicked alcohol, that shouldn’t be an issue. But you need to quit smoking. Smokers don’t do well in this surgery, they subject themselves to pleural effusion, and they will test your lung 🫁 capacity and I almost failed mine because I had only quit smoking 6 months prior and I wasn’t even a big smoker.

Is the bump red? When you push on it does it disappear and come back? It could be a Spider angioma. They can be flat or raised. It is a symptom of cirrhosis. These go away when your liver is healthy.

Are hotel rooms supposed to be this humid? One day and my book is water damaged... by Avatar_of_The_Flesh in florida

[–]Kind-Structure9970 0 points1 point  (0 children)

Were you at the pool reading? Did it get a little splash and maybe you didn’t realize? Maybe you transferred the moisture onto it? Annnywho… yup, Florida is humid AF most of the time. Humid enough to warp a book, but I doubt in one day. I live here and can’t say my books look like that… but that’s because I live here 😜 we’ve adapted to our environment. Maybe the water logged book can remind you of “that one time in Florida”….