Hope everyone is keeping well (or as well as they can). I can't believe I have already reached 4 months since I had my liver transplant. I'm still at fortnightly clinic appointments as I have had a couple of teething problems.
My liver and kidneys are doing great. Last bilirubin reading was 24 which is fantastic as the day before my transplant it was 580!!!!!!!
Kidneys failed while waiting in hospital and I had to have dialysis after my transplant but my kidneys are now fine.
I am on ciclosporin and MMF (I was on adoport/tach) but had a very bad reaction to tach with the tremors and had to be weened off it while in hospital and switched to ciclosporin.
I was wondering if anyone has experienced a bad rash whilst on the medication? Mine is on my legs up to my waist and is like a hive type rash with purple/lilac blotches that look like bruises. My skin gets very hot but not itchy.
They have reduced my ciclosporin and MMF last month and it has improved but still not gone.
Don't know if I need to put up with the rash as an ongoing problem now and know I have a healthy liver and kidneys or what they will do about it.
Be good to hear if anyone else takes ciclosporin and MMF and suffer with a rash like I describe.
Love to you all.
Nicki x
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nickiwj
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so glad your 4 months now. Wow where does it go? My kidneys did exactly the same thing and I had to have dialysis too. I had terrible tremor's with adaport but wasn't changed until around 6 months post transplant as my kidneys still wasn't doing great. I had lots of rashes & still do get them but they gave me antihistamines. Mention it again when you go back if it bothers you. No need to suffer is there?
Lovely to hear from you. I hope your doing well too. I honestly don't know where the time has gone. Hasn't been easy but I didn't think recovery would be easy!!!
They have referred me to dermatology so they can check out the rash. They have a dermatology clinic specifically for transplant patients but it's not until end July 😩
Its so good to hear from those in our forum who have gone on to recovery and a new lease of life post transplant. Even if the road was not completely without a few speed bumps in the way.
I am one year post and feel fit and healthy, played a vigorous game of table tennis the other night without feeling too tired ( lost of course - but its not the winning, its the taking part)
Its important that we post the good news. Especially as there are so many here who really need to know that it is possible to achieve a positive outcome.
Great to hear from you. Wow table tennis is super fast paced so well done you!
Glad your doing so well with your recovery too. It's was a year ago I started the process of having chats about assessments for transplant list and a year on, I have been given the precious gift of a new liver from my doner angel and I thank god every night to that person and their brave family.
I did post the journey I went on when I was admitted to hospital just after Christmas and the horrendous time I had being so sick, so desperate for my new liver and near to death.
I too felt that although it made for a hard read and was detailed, I did it to encourage our forum family members in similar positions that you DO fight to get better and you DO recover.
I take each clinic appointment at a time and I'm fortnightly but hope to be promoted to three weekly appointments soon.
Hi Nicki onwards and upwards --you've done all the hard work so now it's time to enjoy your new lease of life -it is always good to read encouraging posts like yours - 🌻👍
Great to hear so many of us are getting back to life free transplant. I am now 6 months post op. My current 'bump in the road' is a bout of Bell's Palsy which has led the right side of my face to drop! Should disappear in a few weeks/months.
But on the bright side I am currently at Centerparcs with my wife, 3 daughters + partners & 4 granddaughters. We are having a great time together, which only a while ago I would not have dreamt possible . Even took a risk & went in the pool today.
So grateful for everything especially my donor & family.
Enjoying each day for what it brings. Gives the strength for the not so good days! keep up the fight all, & enjoy each day.
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