Liver
I’m new
I was just told in March that I have cirrhosis of my liver. I’m 43. I drank, but not an alcoholic or “big drinker”. I live in FL now and will be going to the Mayo Clinic in Jacksonville for liver transplant evaluations. I do not feel ill but I’m a bit yellow off and on. I’m so scared. My blood work is telling them I’m bad. Any thoughts on the Mayo, my situation or fix to stop crying. I have a husband and close family, so my support is there. They just can’t relate. I’m so thankful for YOU that I’m not alone.
TransplantLyfe Favorite
-
I will be thinking and praying for u and giving u strength to get thru this first part.💕🙏🏻
Keep us posted as we will help u thru this..
Hi, I was passed yellow and almost green with over 40 lbs. of edema and I am healthy and fine after 10 years. You will do great. It is hard to trust a process when you are sick , but they are brilliant at what they do at the Mayo Clinic in Florida and will take good care of you. We are all here for you. Transplant Life Jax is a good resource as well. You might also reach out to the social worker, ask about the support group the have. Soon enough you will be offering support to others.
@kowalskik you are not alone! When I was facing kidney failure 14 years ago I felt the same fear and guilt - badly controlled diabetes was my reason for kidney failure and everyone blamed me for it. I wanted to connect with others and that is when we build TransplantLyfe….
👍🌻😊🐾
1 - 30 of 43 Other Answers
Have they given u a MELD score. I myself had cirrhosis of my liver w/was not related to alcohol.
You will get a lot of testing done and if they are like my transplant team they will walk you thru it the whole way. It is hard not to tell you to be scared as I was to.
Sounds like you have the family support, that is what got me thru it.
if you have questions please ask, I am almost 2years liver transplant am doing very well.
Transplant Patient
you are NOT alone! Every emotion you feel is valid. if you need to cry, cry. Process it all.
mayo is a fantastic transplant center.
we’re here to support you every step of the way.
Transplant Patient
Oh friend, you’re not alone! We are here for you every step of the way. The pre transplant phase is so isolating and there’s so much going on it’s hard to wrap your head around anything.
it feels like there’s so much you need to do, but also the most important thing is just to be present with what’s going on, feel your feelings, and take it one step at a time.
we’ve got you. You can do hard things
I am so happy you found us. Please know you are safe to ask your questions here!
Transplant Patient
@kowalskik - Indeed, YOU ARE NOT ALONE. You're in a NO JUDGEMENT ZONE. Best of luck as the evaluations begin. Please feel free to post your updates/issues/concerns here, as your journey continues. You'll find others who have been through/are in similar situations.
Thank you so much everyone. I guess crying is normal. It’s all so new. I just don’t want to die. It weighs on my mind 24/7. What does it feel like to be sick because of liver failure? I want to be ready and prepared if I get sick. My eyes turn yellow and quickly turn white. Anyone experience this? Can high bilirubin kill me? I know these questions will be answered by the doctors, but I’m making myself ill with anxiety. Thank you! I feel such comfort with this outlet.
I'm truly so sorry you're going through this and experiencing this. I had a kidney failure, so I'm not familiar with all the liver medical side, but I get the feeling your limited mortality at a young age. I was 31 when I was diagnosed.
I agree with all the above comments. You are not alone and all your feelings are valid.
It's also good to remind yourself that right now, in this moment, you are ok. In the present moment, everything is always all right. When you are going through a big challenge, it helps to shorten your focus. If you can't think about the coming week, do the coming day. If that feels too much, focus on the next hour, next minute, next few seconds.
And don't hesitate to reach out for support here. We are here for you.
I'll also leave you with a podcast I did about What to do When You're going through something hard. You can listen to it here:
Great podcast!
You're not alone. I'm 31 also in Florida and I was diagnosed with a heap of liver issues in March after waking up completely yellow one morning.
I went to multiple doctors and two hospitals but ended up in Tampa General Hospital in late April. I was in the I.C.U. for over 25 days and my MELD score got as high as 38. They told me I would soon not be able to walk at all and would need a ventilator to breathe. They told me I had about a week left to live unless they could find a donor. I say all of this to say that I felt no pain at all, walked (although it became more difficult) every day, and never needed a ventilator. They found my donor three days later. I know every situation is unique but sometimes you will be given the worst case scenario of the situation and it may not apply to you.
The tests they gave me were all non invasive except for one endoscopy which was a breeze because they put me to sleep for that. You'll probably be given a number of ultrasound scans and those were as uncomfortable as it got for me.
I don't know if high bilirubin can kill you but I can tell you for sure that I was very yellow for almost two months so if you're still seeing your skin color I would try to put the bilirubin in the back of your mind as much as you can. They will likely give you a medicine to flush your liver out called Lactulose and it's by far the most volatile medicine I've ever had but it's still bearable.
Mayo clinic is in the top three liver transplant hospitals in the state so you're in extremely capable hands.
I'm sorry if I've given too much or too little information. I just came across this site and made an account to post a reply here. Please let me know if you have any specific questions I might be able to answer.
I'm not religious but I was raised going to Sunday school and church so I have a Catholic background. This surgery didn't help me reconnect with God or anything like that but when I was in the hospital I came across a verse or passage from the Bible that says "No sword formed against you shall prosper." I know it sounds crazy but whenever I felt any worry or anxiety I reminded myself of that quote and it made me calm and almost made me feel reassured that I'd be ok. That and I turned to humor a lot even though that's always been my personality.
Sorry again for the long post and feel free to reach out!
Tom
Hi Tom,
I want to say wow u have been thru a lot congrats on the LT I hope u are feeling much better now. Yes lactulose was definitely “yuk” but it helped me also.
@tom1991 what a coincidence. I was 31, living in Florida (Destin) when I was diagnosed with kidney failure and put on the transplant list. We moved to Michigan and I ended up having my transplant there. Hope you are doing better. Sounds like you’ve been through a lot of challenges. 💕
Thank you for the info. Never ever too much for me. I find it comforting as I’m terrified of everything. I never was, but I am. I go for testing next Friday. I’m terrified of hearing what I’ve been prepping for. I’m quite religious (Catholic). It’s wonderful but makes me cry. So does typing this. What a bad side effect. Prior to this liver diagnosis in April, I couldn’t tell you the last time I shed a tear. I pray for everyone on here and love hearing about their journey. Thank you!!
So many thanks. It means so much. The words of those who have experienced this mean a lot.
@Melsamm I am doing good now almost 4 months out. I'm glad the lactulose days are over lol!
@Shelbycreates that's a wild coincidence. My kidney was close to failing too but they said that because the liver and kidney are so closely related they sometimes do double transplants. They were keeping a close eye on my creatinine and GFR and I know my albumin was also all out of whack. They put me on lasix to try to help me out with the kidney but after the liver transplant the kidney finally stabilized.
@kowalskik just know the tests themselves aren't bad but it is a lot of bloodwork. I'm not really a needle guy so I was worried about this but for the most part they used tiny butterfly needles and I barely felt them at all. Other than that they'll likely give you a couple of x rays, an MRI style scan where they slide you into a tube, the ultrasound style scans which I mentioned earlier, an EGK, and possibly the endoscopy. You may not need such an in depth battery of tests and hopefully all turns out well with your preliminary tests next Friday and you don't need any of them! We're all here for you!
Tom 🤑🤑haha totally agree. I am almost 2yrs. LT. Now we have to get our bodies use to the immunosuppressants.
Watching this beautiful community show up for each other is profound!
Transplant Patient
I adore this supportive community. When people are feeling alone, confused, or really…any emotion, you all show up to encourage, support, speak truth, and carry each other.
I tell my transplant story in 4 parts on my podcast. Hopefully it can offer some insight and answer some of your questions:
First of all, welcome! Any new news sometimes takes a while to process, understand and accept. Accepting we are not perfectly healthy and need medication to make us healthier is a hard pill to swallow. (see what i did there!) But seriously, having emotions and processing them instead of stuffing them down and ignoring them is so much healthier.
I am a caregiver to my son who was evaluated for liver transplant as a baby. Knowing the numbers can look bad is scary. But also knowing the ins and outs of your body is important. Feel few to discuss how you are feeling with your team. I am an advocate for evaluation and getting on the list. The reason is, you never know when things could turn for the better or the worse and bring done with the evaluation process will speed things up in your favor later on.
Anyway, that's just my 2 cents. Hugs and prayers and well wishes and some fairy dust sprinkled in for this not so welcome new news.
Thank you so much to everyone. Being on the list now scares me so much. I appreciate having such a great resource of support and knowledge with all of you. I’m grateful.
Transplant Patient
Remember, @kowalskik - you're definately not alone & in the right place for good support.
🤗 🙏
I got my liver December 13/14 2022. Just a random call at 10:14pm to tell me yo head up to jacksonville for the transplant. I’m going home tomorrow. I still hurt. I’m scared. My labs aren’t 100% yet, but I need to be in my own bed to sleep properly. I’m so thankful but in so much pain… mostly GI. I cry and complain and get very grumpy due to the roids. I’m not me. I know it. And I’m scared. Does this go away at all ? I miss being me. I can’t sleep and it’s wearing on me. I’m following orders , but nothing is helping. My life feels like a very blessed nightmare. Sorry I’m blabbing. I just would love to hear that I’m not alone. I keep waiting to get better. It’s not fast enough because I just feel worse. Any advice?
Oh sweetie. Yes, this makes total sense. You've been through so much. I know I was completely terrified after my surgery. It wasn't until I started to be able to trust that my body was capable of healing and I started to relax into the "rest and repair" state that my kidney levels began to improve and stabilize (my numbers were terrible for the first 7 weeks post op). They slowly improved and I began feeling better and better. I still have some bumps in the road along the way, but I'm feeling so much better 4 1/2 years post transplant. I highly recommend finding things that are soothing and comforting to you and allowing your brain to begin trusting your body again. Please don't hesitate to reach out for more support. You've got a whole community who has your back here. Sending healing your way!!
💪💪 👍👍💚💚 one of the greatest gifts is your Liver Transplant and a beginning of new health😊 life.
Yes Yes it will get better b/f u know it.. you have to remember this is a lot for your body, major surgery takes time. once they start tweaking meds and getting the right combination u will see a big difference, especially when u get off the steroids. As far as sleep😩 it sucks. Ask your TP team if u can try melatonin, it may help.
The first 6 months was the hardest time for me. 💚🦋🌼 also your numbers will go up/down as they tweak things to, that is not abnormal.
I🙏🏻🙏🏻 u will start feeling better soon.
like Shelby said u have a great group of folks that will help u get thru your LTP journey. We r here for u…
@kowalskik I'm so glad the call for you didn't take years to get the liver. I am sorry the light wasn't just switched on and everything got better as quickly as we all would have hoped for you. Managing a new world of transplant meds and recovery from a major surgery can be so hard.
My doctor said most of the time when the donation is from a living person that the recipient often feels so much better, more quickly then the donor because the emotions of "will this organ fail? Will I get better? and the pressures we put on our bodies is hard and the success of the organ is a lot."
I'd maybe talk to the Social Worker or the counselor at the hospital and be open and honest about how you feel, how worried you are, and why your numbers aren't in the normal range yet.
If I were in your shoes I think I also might try some deep meditation. And make sure you stay on top of the medication they give you for pain. It's a lot harder to get the pain under control then it is so to manage the pain.
My first 2livers were a no go the third one was the one.. So u have so many emotions w/your LTP. Journey. I to was very fortunate that I was not on the LTP list very long either.
🌼🌈 hope u r feeling better today..💚💚
I cannot imagine 3 tries at it. I’m hanging in a string with just 1. Bless you !!!!!
Are there any pain alternatives? I’ll be 4 weeks out in wednesday. I’m lowering my dosage of oxy 5. But my whole middle hurts awful. Just awful. I’m in tears too much. I don’t fear addiction, but I know doctors are under pressure. I had surgery before and did great with just Aleve. Now that I can’t take that, I don’t know what to do. Lidocaine patches aren’t cutting it because I’d need to cover 50% of my body. I consider my ability to handle pain quite high, but this is insane. I don’t have the mental capacity to relax and meditate or anything resembling that. Any suggestions? I’m desperate. The doctors offer nothing other than stuff I cannot imagine being able to do. Thank you EVERYONE for your support and confidence. It’s been my #1 so far. Thank you!