Hi everyone, I had a transplant in March 1997 when I was 6 years old (I’ll be 28 in November) and for the last couple of years my lfts have been raised and at one point I was very, very jaundiced. I was put back on the list in January this year. I don’t remember much of my first transplant and I didn’t take much in at the assessment so I’d love to hear people’s experiences of both being on the list and the transplant itself.
On a more positive note other than the blip I had being jaundiced for around 6 months I’ve lived a normal healthy life and have had 2 successful pregnancies also. My current symptoms aren’t awful either, a bit of pain around my liver and in my legs which the doctors think is due to the varices I have from hypertension and feeling quite tired. I hope that little bit helps anyone waiting for their first liver feel more positive about their life post transplant.
Thanks to anyone that reads this 🙂
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I am relatively new to liver disease and don't know anything about transplants..sorry. However you have made me feel more optimistic about the future with your transplant story. Good luck and keep well. Deb
Yes it’s odd to think half an adult liver was even fitted into me when I was that small!
I was born with tyrosineamia type 2 which was diagnosed when I was around 3 or 4. Don’t ask me what it is as I don’t really know to be honest! Something to do with my liver not being able to break down tyrosine I think.
Really interested to read your story but sorry you’re back on the list again
Back in 1995 I had allergic reaction to antibiotics which caused acute liver failure. I had a transplant but it never worked properly and had to have a second transplant within 4 months. My second transplant had a blocked artery and I had to be within 2 weeks. The third liver worked well. Recovery for me took about a year, but I went on to live a normal life for 22 years. I had my beautiful daughter, I worked hard and had lovely holidays. Started getting ill with bleeding a couple of years ago and found out I had cirrhosis Like you I went back on the list in January At the moment I feel ok My diet is good. I have a little energy and feel positive about the future. I wish you the best of luck xx
Wow you’ve really been through it! That’s good to hear you’ve had 22 years of normality though. I hope your next liver lasts even longer 🙂 good luck and thank you for sharing, it’s reassuring to hear of others who’ve had long lasting transplanted livers.
So sorry to hear. This is obviously a rare disease, had never heard of it. Mu hubby has one of the rarer diseases (A1AD) and was transplanted nearly 7 years ago due to cirrhosis and HCC.
I’ve never heard of that. It must be rare. It must have been terrifying to go through such a big operation as a child. I find having a positive frame of mind helps to get through things especially when things get tough (sometimes easier to say and do). Best of luck and I hope you get your call soon x
Hi
Having a journey of over 6 years being ill all the usual symptoms. I had my transplant 5 months ago and feel very positive the whole process was very through and very well controlled, and my quality of life is way better.
Everyone journey is different but rest assured the process and results are all very good!
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