I was listed on a Friday and transplanted the following Wednesday morning and I was not in hospital? I was wondering if anyone else was transplanted from home as soon or even sooner? I’m still overwhelmed, happily so, at how quick I it happened? I’m A+ blood group and received an A- donation. Thoughts?
Listing times: I was listed on a Friday... - British Liver Trust
Listing times
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Poobear69
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There was one poster some time ago who was assessed and listed and got the call as they drove home. If I remember correctly t/p went ahead on that first occasion.
Good luck with your continued recovery.
Katie
Yes, what exactly did you have transplanted?
Hi,That was really quick, and I thought mine was quick. I was not in hospital, only four years ago when I had 2 Tace sessions for my tumours, I was in for a couple of days each session. I was put on the list and it was just 10 weeks to the much wanted and awaited phone call and luckily transplant went ahead first time. I too am A+ blood group. My donor was the same blood group. The only difference was that my donor was positive for CMV virus and I was negative. I was surprised to find out at my last clinic, a week before Christmas, that my donor was male and only 29 years of age. I'm still trying to get my head and emotions around that fact. He was younger than my own son. I am going to write my letter soon. I knew that it was going to be a difficult letter to write but now, knowing that my donor was so young, I feel at a loss as to what I can say that will bring his family some comfort. Sorry, Rambling on here! Alf
Not rambling at all, it’s good to hear of others experiences. My donor was, as I mentioned, A- and + toxo which I’m not. He was 38 years old which is quite sad to deal with. Like yourself tbe fisrst call was the only call and the last ver was good to go. It’s all quite odd as on the Friday that I had my educational I was told then I was very poorly, although I felt great? I’m surprised I was hospitalised? I was then transplanted early hours Wednesday morning? Can’t seem to drill down why so quickly, not complaining though. I did really well in theatre, 5 hours 20, 1 night ICU, 8 nights in acute and then home. The only “issue” is my Advagraf (tax) has still not reached the therapeutic level in my blood? hoping that will sort itself out eventually! I’m 5 months post and have been back at the gym 10 weeks, walking on average 6 miles a day. Think that I’m doing pretty good for an old fella! Thank you for sharing with me 👌🏼
in reply to Poobear69
You got back to gym after 2.5 months?? That's most impressive! I didn't start riding my bike until 10 months post. Even then I had to stop several times as I'd get very achy. Not sure what exercising you're doing at the gym but be careful as you could be at risk of an incisional hernia. Have you had the thumbs up from your transplant team? I remember being told to wait around a year before doing any weight training.
Poobear69 in reply to
It’s a bit crazy eh?! I was actually referred to the gym by the OT team who work with gyms and PT’s to work with individuals like me. I have a thorough and thought out excercise programme that loonks at my post and present health conditions. My consultant was happy for me to go ahead with mild exercise for an hour 4 seesions a week. I don’t except use my abdomen as yet though. It’s all free PT, sessions, membership and many other classes if you’re referred!
in reply to Poobear69
Oh wow I was never told about or referred for anything like that. Didn't even get seen by a physiotherapist after the transplant 😒
I think that your recovery is absolutely amazing. Miles and I will definitely not be asking you to take part in our race, we wan't a chance of winning! lol. With my back problems (spinal fractures) I can't really think about exercise at the moment, at some stage I really want to get walking. An area of my body that I'm particularly bothered about are my thighs. I've lost a lot of muscle there and I'm sure that is what is making me unsteady. I need to find an exercise for my thighs that I can do safely without danger of diving to the floor. Is Advagraf the tablet that is only taken once a day? I'm on Adaport (tac), I started off on 6mg morning and night and it's been decreasing with each clinic appointment, now down to 3mg morning and 2mg night. My new liver is doing really well but my bones have suffered over the last 5 years (3 of those on daily chemo).
Your back injury sounds really nasty? How did that happen? Yes, I’m on Advagraf . I’m in clinic on Thursday so, hopefully, consultant will reduce again?
Post transplant and back at home I fell out of bed reaching for something off bedside table. I gashed my hand on the corner of the table as I went down. We were more concerned with the gash at the time because worry of getting infection. I only fell on to carpet but our bed is quite high. As I was still in pain from the transplant (i'd had a huge hemotoma after and wound from op took ages to heal) I didn't notice the extra pain as I was on strong pain killers. Other pain cleared up but back went on and on. GP sent me for x ray........result 2 spinal fractures. I'm sure that by time I had Xray they were starting to heal. Few weeks later feeling much better we decided to have a hol (cottage in Yorkshire). We both needed it, first hol for 5 years!! 2nd day on hol I fell in the shower badly. Stubborn as usual I just took to bed for days. Wife took me to A&E on our return. Result was nearly a week in hospital. I'd opened the 2 fractures and made a 3rd bigger one. I'm in a spinal brace now and for possibly another 2 months. Sure its getting better now because I've had no pain killers for well over 24 hours.sorry for late reply, I can only use my laptop because hands shake from meds and can't get comfy in bed to use laptop with Robocop brace on. Spending a lot of time in bed as that seems to be the answer to healing my spine. I'm getting there though. Treacle that I've been wading through is getting thinner! lol..........The length of this reply is what Milo would term as an epistle! lol
Wow, you’ve been through it? Again, touch wood, I cannot, after reading others experiences, believe how very fortunate I’ve been to date? The only “hiccup” that I’ve had is that my taclorimus decided it didn’t like my eyes and attacked my optic nerves? Had a week back in hospital and after 2 MRI, 2 CT and 1 lumba p that it was diagnosed? Previously it had only been reported and mentioned in articles? I’ve lost two lines in my right eye and 1 line in left eyes. I’ve now been registered as visually impaired but, thank goodness, it’s actually not that bad. Put it this way it’s far easier than what your ve has to go through. i wish you a speedy and full recovery.
Thank you. That was a real bummer about your eyes! Good job that it was realised fairly quickly before any more damage was done. I saw that there is a trial being conducted at the moment (think it's for period of a year) where hopefully people taking part will not have to take immunosuppressants any more. Don't know any more details than that. Think it's amazing how quickly medical science moves on! It's been a bit rough for me but I keep a sense of humour about it all and just so happy to be here, I know that I wouldn't have made Christmas without transplant. Neighbours call me Lazarus! lol
It is so ncredible isn't it? I was told on the Friday that I would probably pass within six weeks? UKELD is still showing amazing an really brilliant 9% mortality risk year 1! I think transplant team would be a little peed off if they knew I was calculating my scores using the exact same system that they use. I’m not for one moment disgnosibg myself or being paranoid I just want to be an informed donor liver receipiant?
When I asked I was told that my meld score was 54 and that was at a clinic 2 weeks before my transplant.I had no idea what that score represented. I didn't know about this forum then either. So then when I got home I was straight on the internet and looked it up. Gulp!! Oh dear!! not good!!
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