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New to forum - currently going through transplant assessment

Carterc1 profile image
13 Replies

Hi all - Im 36 and was diagnosed with NASH Cirrhosis 2yrs ago following hospital admission for what I thought was food poisoning. Had varices banded several times and have recently had ascites drain. I'm currently going through transplant assessment and I'm being referred to leeds.

I've read many of your stories and there are some amazing and inspiring people on here, I would love to have a support group from guys like you to share experiences.

Hope to hear from some of you soon take care

Craig

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Carterc1
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13 Replies
jojokarak profile image
jojokarak

Hi Craig I had my transplant at Leeds October 2016 they are a wonderful hospital anything you need to know ask away x

Carterc1 profile image
Carterc1 in reply to jojokarak

Thanks JoJo and thanks for your help so far x

Millie09 profile image
Millie09

Hi carterc1 .welcome to the forum..i am not on any transplant list as yet 🤞but as we all know how very quickly that can suddenly change. Hope all goes well at your assesment. There are plenty o. Here post transplant who can help if they can .best wishes..linda

Carterc1 profile image
Carterc1 in reply to Millie09

Thanks Linda, it is scary how quick things can change! I hope you continue to stay well enough to not be added to the list! Take care, Craig

Millie09 profile image
Millie09 in reply to Carterc1

Hi Craig, yes it is . That's why i don't plan anything much and if i do i make sure its not far away. Well we will see .. day at a time is how i live. Take care and good luck on your assesment

h0b0 profile image
h0b0

Hi Craig,

My partner had his transplant July 2016 in Leeds & has never looked back. Ask any questions any time & someone will always try to help. This forun was my lifeline when he was very ill.xx

meme7 profile image
meme7 in reply to h0b0

Hi hObO. I had my transplant 3 months ago, You must have been the caregiver. No one really realizes how much the caregiver actually goes through. You are part of the whole ordeal from beginning to when the receipient gets to the stage of being able to care totally for themselves. My mate was that for me. He became a cook, a nurse, a housekeeper, and anything I needed. I know what you went through as well. Thanks, for being that person.

Hope all is well and congratulations on you partner's success.

p.s. my hubby said the worst part of it all was when I was in surgery. It lasted over 6 hours and he cried like a baby when the surgeon came to tell him how well it went and I was doing very well.

h0b0 profile image
h0b0 in reply to meme7

What a lovely thing say ..Thank You. The time in theatre was also my worst part. I was alone for 6.5 hours but luckily I managed to get a room at the hospital. I got the call at 1.30am to say all had gone well.I managed a couple of hours sleep after that. Hope you're doing well but remember it's still early days so don't overdo it.xx

Identity75 profile image
Identity75

Ello mate,

Just had mine done at Leeds. They are amazing. The nicest and most competent bunch of guys and gals you’d ever hope to meet. You’re in good hands.

Any questions or anything feel free to message me.

All the best.

Carterc1 profile image
Carterc1 in reply to Identity75

Hi identify, hope you are recovering well! It’s great to hear how good the Leeds staff are as I think this can make a big difference during your recovery. I’m learning more about the process each day but any experiences you had are more than welcome. Thanks!

meme7 profile image
meme7

Hi Craig! I live in the States. I had a transplant 3 months ago today. I have been doing well. I have been very fortunate to get a liver very quickly. I had cancer in my liver. It was a small growing tumor. I had been seeing a hepatologist for years having check ups and ultra sounds and even MRI's periodically to monitor my liver disease. When the cancer tumor was found on a MRI I was of course very concerned. I knew there was no cure for my liver disease and really had no idea how long till my liver would start shutting down on me. I was in End Stage Liver Disease when the tumor was found. I really liked the doctor who had been seeing me for years. I was driving to Dallas to see him for years and he had cured my Hep C virus years ago. I had Hep C for about 25 years before I ever found it. I went through 2 treatments before with other docs and this doctor managed to cure me on the 3rd time. It was a very strong dose of inteferon/rebetron therapy for 1 year. That was before they had the magic treatment they have now. I am 64 years young now.

Anyway, this doctor who I had been seeing for many years and loved his ways, failed to tell me what I really wanted to hear. He wanted to treat the tumor right off. He felt it was an agressive tumor. I however, felt I had time. I wanted to get on Transplant list. You see here we have guidelines before we can get livers Its based on a point system. With a count for the progression of liver disease and a count for the size of the tumor. My tumor was still small and not big enough to qualify for a liver quite yet. They told me I could not receive a liver and I would not have a chance for liver soon enough. Something told me different.

I went to another liver center at another hospital to get second opinion. There I knew I was where I needed to be. They told me that I was able to get a liver. I started going immediately to the classes and had all the information about liver transplant. I saw their hepatologist. A woman who gave me her personal cell number to call her. Thats how much she cared about my case. After all that my numbers increased and my tumor grew slowly. I was ready to get on list for a transplant. I thought that I could be there for a long time. But I never gave up. I met with their surgeon. He assured me that due to my case. I would get a liver soon. I knew I was where I needed to be. I was on the list for only 30 days. When I get a call. The person tells me that a liver had become available. However, I was not the prime candidate. Their was someone else before me. The standard with every liver is that you call 2 candidates and have them both ready and where they need to be. I felt so confident and stayed all day about 6 hours waiting. I never gave up. When my phone rings and they tell me If I want the liver it is mine. Well I said an immediate YES! And of course you know the rest of story. My point for you is this. Never give up hope. Stay positive and stay the course. Do everything they say. For me Faith pulled me through all this and I felt I had a real miracle. I don't know what will help you but faith and positivity are very powerful tools. I wish you the best. Feel free to contact me. I wish only good for you.

Carterc1 profile image
Carterc1

Hi all, thank you for your responses they all mean a lot to me, and great to hear all the positives in them! Although I’m clearly worried about having a transplant I would say at the moment my biggest worry is how it will affect my family. I live on my own and while my parents are more than happy for me to move in with them my mum has MS so I really don’t want to put extra stress or strain on anyone.

I’ve had a call today from York hospital saying they want me to go in next week to discuss these sort of things so I guess I will know more then but it’s great to have your perspectives.

Craig x

meme7 profile image
meme7

Keep in touch... saw your post that you got your call today. Awesome stuff.

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