Just a quick message to express relief after my first anniversary visit, all is still going really well and my anti immune drugs have been stopped, so down to just 3 prograf a day, plus asprin.
I feel so lucky and will have some thoughts and thanks to my donor, and make sure I take advantage of the precious gift without which I would not be hear to write this.
Also I have a skin cancer growth removed that appeared after Christmas, and that appears to have been success (Keeping my fingers crossed).
A bit of a warning to wear a hat in the sun!
Thanks to you all for your support during my journey
Happy anniversary and hoping that you continue with the excellent progress.
Thanks for the reminder about the hats, time to dust them off and find the sun cream.
Best wishes,
Mark.
Well Done David, the first of many anniversaries to come.
How often do you travel back to the QE? You will no longer be seen by one of the specialist transplant team on the liver clinic, but now come under a monitoring team at the same clinic who just keep on monitoring your progress and who keep and eye on your meds. I am 29-months post, and my prograf is now down to 1mg twice a day. I know of some people who had their transplant some 12-years ago, and who are on 1 and a half prograf a day.
If you managed to have a picture taken when you were up on ward 726, then this will always be a reminder of just how poorly we all are after being reborn. I went back up onto the ward just before Christmas, just to say hello. The staff always love to see their patients now and again. It gives them a real buzz to see the fruits of there caring work. To see a picture of you on the ward, and to see how fit and healthy you look now, really gives them job satisfaction and will make them feel so good throughout the rest of their shift.
I was once told by a nurse on the ward, that once a patient leaves through those ward doors, they rarely ever see them again. So, whenever I'm back in clinic, I always pop up for a chat. I'm now also going through the process of being a ward volunteer. They've already nominated me for a humour transplant as they say my jokes are pretty sick.
Good luck, and hope you have many lovely years to come.
• in reply to
Richard
I am on three month check up again, the consultant was the one that looked after me in intensive care and his wife also is a nurse in the unit.
I did not take any pictures, but my wife first comment after the op was 'you are pink'
People where talking on the phone said welcome back as they could tell from my voice that the HE has gone
We are planning to visit the ward on my next visit did not have enough time this visit
Thinking about the 15th of June and the celebration I was wondering about a stand or something so form members could meet each other (or hide from )
(I have yet to find out how to emojis and add pictures)
Good for you being a ward visitor I missed out on having one of them.
Hi David, well that has flown by ! Well for me anyway, I remember your posts from the call to post transplant, fantastic news on both 👍🏻😊. may you continue to do well ! I'm under the QEHB ,not on any transplant list as yet, just regular 6 month checks , drs are great there and all of the staff from reception to nurses . my best wishes to you 😁
Thanks.
It has passed very quickly! now the HE fog as cleared I think about the 8 years its taken to get here.
In 11 days time last year I would have been in ambulance on a snow blocked M6 on my the way to Birmingham, it seem a life time ago.
Anyway how are you doing? Under the QEHB you are in the best place, we have probably passed in the waiting area. As I dont want to calculate I have times I have made that walk.
I really hope life is treating you as well as possible, and pray that one day if required your transplant will come
Your most welcome David, 8 years ! I was diagnosed with cirrhosis in 2008 , I have no idea how I'm still here lol, considering I was in liver failure, I do thank my lucky stars.
Oh the dreaded snow last March! Who can forget that lol , terrible it was
Keeping well as can be thank you for asking, I have my next check up on April 9th with ms Thompson and her team. Been under QE only 2 years.
Was originally with gastro at a local hospital, I was discharged by them in 2010 and told my disease had stopped ? Left to my own devices. It was only me being on this forum that prompted me to get my GP to refer me to the QE ,as I was wondering why I wasn't with them?
The only pain I am in is my bones! .. yes , osteopenia in my left hip , prolapse discs and now problem with my left knee , I did bring this to the attention of my dr back in June last year but he just turned a blind eye , so I had a fall at home in Nov last yr due to my knee buckling under me , ripped off half my toe nail and was bruised and sore, even then I mentioned this to pain clinic who said it was lack of exercise!! 🤨... did they not hear me?? .. lack of care has now left me in a lot of pain locking knee cap , and waiting on x ray results.
.oh I dont doubt we have crossed paths along the way .so pleased you are doing well .
Who knows? .. fingers crossed.
All the best
Linda
Congrats and best wishes for continued good health.
Mary
• in reply to
Thank you
Congratulations to you long may it continue. Jaycee
Congratulations, it was my 3 year anniversary yesterday. I also had my transplant at QEHB which is a wonderful hospital and the staff are 100% professional and friendly.
I was also informed yesterday that I only need to attend appointments at QEHB once every 12 months instead of every 6 months which is a huge relief, as I live in Merseyside, the travelling is a nightmare.
Maybe we’ll meet at the 5000th. I’ll be wearing a pink carnation in my lapel ....😁
Miles
• in reply to
Thank you. Yes I will be there with my other half, I was thinking that we should all wear something so we recognise each other.
I will look out for you
David
• in reply to
Okey david i was joking of course re lapel but perhaps we could wear name badges with our forum names on. Bit naff but..
PiloMilo (yuk I preferred twosmiles 😁 maybe I’ll change back 😁)
I have been thinking about it and its not easy, perhaps very basic labels white sticky type with our name and forum name underneath, saying hello to some people by their forum name could be interesting.
I thought about getting more interest a little nearer the time, perhaps the british liver trust could help? hint hint
Hello David glad your doing so well.i noticed one of your posts was about aches and pains.im currently 4 weeks post transplant myself and wasn’t expecting instantly to feel great.but I’ve brought this up at the QE clinics that my chest and imparticular my back aches a lot of the time and they don’t really have an answer but as your further on than myself did you have the same and if so have they subsided after reducing your meds.thanks
Hi Pope, I'm 7 months post transplant now. I had bad backache immediately after transplant for several weeks and I found using a hot water bottle really eased it. I have some back problems now but for a different reason. I was told that after transplant the outside stitches are normally fairly quick to heal but there is internal healing going on for a long time after. It's a massive and lengthy operation and it can take up to a year or even longer to feel like you are back to normal. I suppose that the younger and fitter you are then the quicker the recovery.Some things do get better as the meds reduce. At 4 weeks you are early days into recovery but each week will see improvements. Best wishes. Alf
When I first joined this site it was to ask if anyone had any trouble with their operation wound healing. Mine unfortunately took 13 weeks with a visit from the district nurse twice a week to change the dressings. Also I remember asking about backache too. So we are all very different with all our stages of healing. The only thing I get now re my liver transplant is sometimes a slight sting from the scar, so that can't be bad! If I remembered to rub some moisturising cream into the scar now and then I bet that I wouldn't even get that sting! lol.
Mine have reduced quite a bit of late, so have a few thing as my meds have now dropped off a lot. This has help me feel better, especially stopping the steroids and most of the immune tablets only on Prograf now (reduced dose)
You have to remember your body has had a pounding and it why I felt a lot better in myself in the early stages my body took 6 months or so before it really started to recover and now a year on do I realise it still is recovering.
I can only say how it has been for me, I hope this has helped
Definitely sunhat in any form or description,2 cancer type scabs were removed recently, cryotherapy, damned painful but successful, thank goodness, TX 2017 and feeling really good; Best of luck to you and all your loved ones!!
Well done David on your first anniversary, and I wish you many more to come.....👍👍👍
I rarely wear hats, my thatch keeps my head covered, but do wear a large brimmed hat ( Aussie Outback type) in really hot weather to protect my face. I thought of putting some corks round the brim, but then realised that I don't drink anymore🤣🤣🤣🤣
Well we can only take your word on you wearing this hat so get taking a picci and share with us all😊
I've been looking for one of those hats to go with my very long brown wax Clint Eastwood type coat which I love to bits!😁
• in reply to
I would but have yet to figure out how to upload pictures
This post is 8 months old all of a sudden getting new reply's?
• in reply to
Hi David
Whoops ! Oh well on old post! Lol! It's still a great way to update everyone 😊.
It's easy to load photo if you write a new post. Scroll to bottom.of message and you will find add photo! Click on this, it will then open up your saved photos! Click on the one you want then press post!
Take care
Love Trish
• in reply to
Didn't you mean davianne to upload a pic? It looks like david5354 thought your advice was for him to change his icon. You may like a Tilley hat if you haven't tried one. They work with stockman-type coats, and can be sun or rain and wind-proof.
Well, I've got all of that kit.......just don't look anything like Clint😢😢😢😁😁😁. Annie feels the cold, and I don't, so I'm on Derek's side🤣🤣🤣, if you see what I mean😁😁😁
I normally dont feel the cold either, it's only in the last 12 months my legs and feet have since this Liver issue!
I dont have a thing for Clint! Never have ! 👎 not my type! Always liked white hair guys even when younger! Lol Sean Connery James Cobb both with white hair ....
Thanks for the reply This post is from 8 months ago, I have another reply as well
Has it reappeared?
I am still going really well
With regards to hats its the anti suppressants that make you a lot more liable, I have a reasonable thatch, but was advised to always wear a hat in the sun, as it a common problem.
Having them removed is something you should avoid if possible
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Fifth Anniversary
Hospital 
Update on visit QEHB 
