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British Liver Trust
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I'm getting there!

Hi all.I went for clinic meeting with my transplant team today (12 weeks post transplant). Great news! My liver function and kidney function are perfect and quite a lot of my tablets have been reduced. The back trouble (2 spinal fractures) that have been giving me so much pain for the last couple of months have actually started to heal. I have had to use very little pain relief over the last 30 hours and the specialists said these sort of fractures can often heal without any intervention. A test for arthritis and a bone density check are being arranged. All in all it's fantastic news for a man who was considered terminal 6 months ago. I'm still pinching myself!! As always, wishing all good things and good outcomes for everyone. Alfred.

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Aww that’s BRILLIANT me ol mucker 😁😁😁😁

It’s nice to hear good news for a change!

Now you’ve done 12 weeks are you moving back to the pre ops team clinic, the so-called Medical Team , at least that’s what they’re called at QEHB. Funny I thought everone we see is part of a Medical Team 😁

That challenge - whatever it is now - is getting closer yippee 😁

Heres looking at yuh...

Miles

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Thank you muchly Twosmiles (I'm slowest). I feel light the light at the end of the tunnel is beginning to flicker in my eyes! I'm pleased if that fact gives hope to others because 4 years ago there was no hope for me. Now here I am, I keep showing up like a bad penny!! lol and I've been so grateful for the encouragement that that has been given to me by the folk on this site and your quips and humour have helped to keep me going through some very painful times (not to mention my latest fractures! lol.) So keep on making me laugh Miles!!! All the very best me ol' fruit. Alfred-the-great (A-regretted-Half)

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Sorry Twosmiles(Some wilts) missed that bit about clinic. No got one more clinic before Christmas. Think they are keeping an eye on me because I'm accident prone! lol. Stay with us! Very best wishes.Alfred-the-Great (Glad Thereafter)

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Ah Alfred, that is great news!

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Thanks Gary

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That is great news. Onward and upward from now. Always good to hear good news xx

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Thank you Smyally.

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That is wonderful news and as a person at the start of this scary journey it is reassuring to hear that having cirrhosis isn't a death sentence. I hope that your fractures continue to heal and you don't break anything else 😄 do you take the once a week " standing up tablet " as my mother calls the calcium tablets? 😂 Take care ...no, seriously take care. Deb

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Hi Deb. I'm taking vitamin d (as a personal choice) but think specialist is writing to GP with some meds suggestions. No, Cirrhosis not a death sentance. If I can make it then everyone else stands a much better chance!! lol. Hope all goes well today. Keep smiling! Alf

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Wonderful news!!

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Thank you lovetocreate (does that name mean to love make things or that you generally like to sound off? lol. All the best Alf

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That is amazing, such a fabulous read. I am dancing here for you, so great! I was at my sort of assessment in Bournemouth yesterday, as well. No news to tell - All still the same, one more TACE to be done... Then they said sit back and wait, who knows one day it could be me saying what you are saying ! Delighted to hear the pain is lessened. I am truly so very happy for you. You have made my day this news.. Jaycee

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Hi Jaycee and thank you. One day you will be saying what I'm saying and I'm sure that your recovery post transplant will be a lot quicker than mine. Anyway it has to happen for you because I want the smug satisfaction of saying those magic words "I TOLD YOU SO!!" Lol. Best wishes always. Alf

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Bring it on xxx

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good for you mate when the liver has problems other things do not heal belive me it will keep getting better and better wife is now 2 years post and is back to how she was before it all went south

but well done you

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Thanks mate, It's great to think that in time I will be out and about getting on with life. All the best. Alf

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That's brilliant Alf. I'm made up for you.

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Thank you naj.

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That's fantastic news, I'm so pleased for you. Please take . Lynne

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Thanks Lynne.

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All great news I had my 9 month check up and all good, and 3 month appointment.

Like you I would have been on the other side by June, it all takes time to take in.

I feel it a little harder now on three months visits, I got used to the constant reassurance.

But still very Happy!

David

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Hi David. I've still got one more clinic just before Christmas. Think they are keeping an eye on me because of fractures (i'm an accident waiting to happen!! lol) but think after that clinic I will be maybe on 3 monthly. Yes, it takes time to get your head round the I'm still here bit when you were ticked off as a gonner! I'm going to enjoy every moment of my 'extra time'. Keep on trucking David! All the very best. Alf

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Great news, thank you for letting us know. It is lovely to hear positive news. Continue looking after yourself, take it slowly.

Very best wishes, for continued good health.

E x x

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Thank you Wass71 and all the very best to you. Alf

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Fantastic news, i am 5 years post transplant now, so you can do it too. Best wishes and stay positive. X😊😊

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Thank you Dizzime. If I get another 5 years I will be ecstatic!! Alf

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There have been a few up and downs which didn't help this year with my appendix having to come out!! Set me back a bit but ok now. Onwards and upwards hopefully got a lot of years ahead of me yet. Not going to give up ever. Stay strong 😊😊Ruth

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Yes. Good positive thoughts and, as you say, onward and upwards and hopefully lots of years ahead for us all to enjoy. Keep on smiling. Alf

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So pleased for you Alfred - you must be over the moon. It's always heart warming to hear positive news. 😘

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Thank you Darsmum. Alf

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Thanks for sharing this positive news alfredthegreat We wish you a continued healthy recovery.

Warm wishes

Trust1

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Thank you. With all the support from my medical team and the good folk on here how can I possibly go wrong?!! Alfred.

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Alfred, read the rest, like you one more clinic before Xmas, Remember to take a card!😬

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About 12 of them in front of me at my clinic so a bit difficult with the card issue. Will take them some fancy biscuits for tea break, lol

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Hi Alfred, 3 months, 4 days post transplant. Fractured vertebrae just before diagnosed, a tad over refreshed and fell down the stairs, ouch. On the ‘crash’ ward, I was the one with the yellow drip.

Anyway, just read my latest clinic report to my GP, quote ‘liver tests are excellent’, so all going well. Only grasping how I’ll I have been, priority on list with type B blood.Enjoying everyday, each one a gift. Pain relief is currently an issue, 5 teeth extracted and 2 more to go, so looking like turkey and sprout soup.

Keep moving forward and stay positive. Have your clinic appointments moved out longer?

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Hi Snoutie. So you were a bank holiday transplant too. You sound accident prone like me, lol. I'm dropping down my pain meds now. Have been taking quite a lot of pain relief up to now and I've been a bit worried about that. Scared I'll harm new liver! They told me at clinic yesterday that my liver and kidney tests were spot on so that's very reassuring. No, not moved on to longer clinic dates yet. Got another on 20th Dec. probably because of my fractures and also my donor was positive for cmv virus and I was negative (other than that it was a perfect match) so I am still on anti-viral meds for another 2 weeks. Hope you get your pain issues sorted. Great news about your liver test! All the very best to you. Alf.

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Alfred, mine was 18/08/18 at around 8am (I was under), so a week ahead of you. Shame I am not Chinese but suppose I could be honorary.

Snap(very poor pun), two fractured vertebra and just less than two months before diagnosis. Like you, I am very protective over my donors gift. Went to a hotel to celebrate three months on Sunday, the wife offered to get my fruit salad, NO GRAPEFRUIT! ‘Err why’, no idea but I’ll find out. Pain relief limited to paracetamol, no plans to damage new part.

CMV, I now have two negatives, so no more Valganciclogir. Down to 4 types of meds, doses reducing. Clinics were two weeks, now four to five.

On the clumsy front, cancelled the fall alarm, no gone. Get nervous that was a cost cutting measure to far! Sounds like yourself, Miles and me are all on similar trajectories, good luck everyone and do not google the stats.

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I was 26/8/18 about 8.30 am. I think that grapefruit, seville oranges and orange marmalade can interfere with the workings of the immunosuppressant drugs. I'm same, down to 4 drugs re liver and decreasing each clinic visit. Pain now is only my fractures and it is getting a bit less each day. Realise now with hindsight that fractures must have happened about 6 weeks ago. I turned to reach something of my bedside table and sort of rolled out of bed onto the floor. I wasn't aware that I'd hurt my back because I was suffering from post op pain and backache already. Also I gashed my arm on the corner of the bedside table and I was more concerned with that with having low immunity to infection.. It's my wife that put 2 and 2 together and realised that's when the spine problem happened. Anyway it's started healing now so it's a bonus that I don't have to have any kind of surgery. What have you been doing to your teeth? No Christmas toffees for you!!! lol. Alf

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Alf, thanks for clarifying the citrus issue, all off the list, nectarines, pineapple, berries etc from now. Teeth...told the dentist that I was on transplant list and that limited what was possible. Essential work booked in at maxilla-facial unit post transplant. An Ambulance outside the dentist is not going to entice already nervous patients in. Halfway through that bit post transplant. Snap regarding the bedside table but have managed to stay in bed. The vertebrae matter takes a while to clear up, mine was three months. I have the aching back though, hospital waiting room chairs (not a complaint)? Keep mending and don’t forget the pills. Much easier now 6 tablets a day in four flavours.

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Not sure about pineapple, nectarines and berries but definitely avoid seville oranges and anything made from them (usually marmalade), also grapefruit is a no no for people on diabetic meds. Not easy going to appointments with back pain. Suppose if I did my spine damage 5/6 weeks ago then I'm probably half way through the healing process (hope so!). In a weeks time wife and I are going away for a week in a Yorkshire cottage. Might as well be in discomfort by the sea as in discomfort at home! Good luck with all that dental work. Laying in a dentists chair would be my worst nightmare at the moment!! lol. Onward and upward! Alf

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Yup, avoiding citrus, plenty of fruit alternatives. Enjoy the week by the sea, no obsessing about phone charging, reception, letting the transplant team know etc, etc. Dentist chair, deep joy. Especially enjoyed the bit when after I got them to phone the transplant coordinators for guidance, with equipment in my mouth, he said ‘what, you’ve already been transplanted?’

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lol. would love to have been a fly on the wall! I had a filling drop out and my dentist put a temporary repair in (no drills or needles) and then wrote off to transplant coordinators for guidance for future treatment. Expect I'll be back for the real deal after Christmas! ouch!!

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Lol, it started with a temporary filling!

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:-)

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Fantastic news.. onwards and upwards x

Agnes

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Hi Agnes,

Getting to the end of the week, last day of tests? How’s it all going?

Mark

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Hopefully good. Don’t know if his body weight will let him down or not, but he seems to be ok with the tube feed, so that’s positive. Thanks

Agnes

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I came close to the tube feed but the thought of it made me force down solids. Has he got ascities and if so, has it been drained?

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Yes he does, but got drained last Thursday. I took him to a&e to make sure he was able for this assessment.12 ltrs taken, it’s usually 15.5 ltrs. I knew if he was full he prob wouldn’t even manage to get here

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The most taken off me was 14 lites, 1 litre = 1 kilo and when you are full of fluid, zero appetite. The supplement drinks are good.

For myself, the ascities went south and I had problems with footwear.

Good luck, if he has got this far then hopefully you’ll get a positive outcome, the majority of assessments end up being listed.

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