Hi Everyone,
As some who follow me on other sites may know I was called in last Wednesday and underwent a success liver transplant, the last week has certainly had its moments but we are definitely moving in the right direction. Still feels very surreal.
There are a few people on here I have become close to and I thank you all for putting up with some of our confectionary powered moments.
All the best to those still waiting.
Gareth xx
Starting to win....I'm happy! I'm up in september let me know when they discharge you or when they pull you back for appointments....I'll buy you a coffee x
Welcome to our exclusive club - wear your membership card (scar) with pride.
Looking forward to meeting you at the Transplant Games.
Take care and enjoy your new liver.
Jim and Lucy
Well done Dulux. Onwards and upwards. How many bags of Haribo you been brought?
It's all about the little blue pills at the moment, that's where the party is at!
Viagra???
Great to hear your good news and really wish you all the very best on the recovery road
fantastic news. Heal well with harribos 👏 👏😘
That's great news, hope you carry on improving xx
Not been on this site for a while
And just read your post. Whow well done and keep on getting fit and well with your new liver
I am pleased so happy that I came across your post and I wish u all the best.
Congratulations and hope you have a speedy recovery . I'm only 8 months down the line but if you have any questions or worries I'll help best I can . Brill news x😊
What is it with the haribos sweets spelt it wrong anyway I laughed as the and the worste thing Lucazade is still my craving after 2and a bit yrs and the haribos I eat one I eat the lot my excuse is once there gone there gone not that I ever leave me house alone other issues so online in desperate craving ordered loads and greedy guts goes threw them .its true but I though I could lighten up someone's day with my haribo and Lucazade detoxing now .best of luck .
i like lucozade too faithfull, and at tesco expess it's only a £1-00 for a large bottle¬!
Thanks I got really expired that I'm not the only one on the price watch of Lucazade I let you no if I see any deals as I have to have original/ small bottles as can't open lids or close them as me hands arthritis.but no one around I'm like a lunatic get the lid off .
hi faithfull, try holding the bottle in one hand -then trapping the top in a door jamb near the hinge--then pulling the door shut--then turning the bottle anticockwise----or maybye try this!!youtube.com/watch?v=iu1K95V...
God Ive just found the oldest sweet shop in the world has everything from my childhood
I am so like that with sweets if opened have to be eaten lol. now got a lot of weight to lose x
You ought to look it up on line it's amazing everything from your childhood and delivered
what is the site called? I'm intriqued sp?
I am happy for you and good luck
great to hear dulux the scar will be almost invisible
Fantastic news hope your recovery a smooth and speedy one 😁
Thanks for all the messages, starting to feel more like me again, got a way to go yet, but moving in the right direction.
Gareth.
Haven't been on hear for a long time but great news and good luck for the future.
Welcome to the club Gareth.
I had some crazy dreams from the morphine post op. Hope your's were technicolor Haribo inspired ones!!
Good luck with the rehabilitation. You will feel it really starts when you get home. I'm also a Gareth, 9+ months post TP. Still pretty surreal!
All the best
Gareth
Two Gareth's, sounds dangerous to me!!
I haven't had any crazy morphine dreams but pulsing steroids was another ball game, that was on another level. Anyway got the badge for that, just focusing on doing that little bit more each day, gently gently catchy monkey, have been nil by haribo so far, my appetite is still pretty poor, but they may well be the hospital food.
Gareth transplant +12 days.
my appetite was shocking they tried feeding me through a tube that didn't go down well. I found everything had a funny taste to it. Awful. Struggled until i got home. They gave me fortijuice supplement drinks. Didn't like those either. Fussy Sod me. Being in a sterile room didn't help that was the smell that made everything taste the same. My mum brought some chunky minestrone soup in with a bit of spice in it. It cleared the smell & taste for a while. Good luck. Haribos soon i hope 🤞 xx
Hi ,
What do you mean by pulsing steroids? Sorry to ask only it's something am possibly going to do myself
Pulsing steroids is a carefully controlled run of high dose steroids designed to counter act organ rejection. It effects people in different ways, the main thing is to stop chronic rejection, and for that if pretty much let them do anything!!
Thanks.
How are you feeling now?has the whole thing sunk in yet, you sound very positive as usual.am 2 things: envious and extremely happy for you, especially as you've waited around 12 months I believe.hope your getting spoilt by those wonderful nurses in there
As things improve physically it's always going to make you feel pretty pleased. I'll be very honest now I believe I am very grounded and able to process information in a rational way but it's such a big thing too go through, I'm dealing with each bit as it becomes important or needs my concentration, there is a lot going on physically and mentally, and I can only cope with so much, there are things only I can do, I have to make sure I let people help me, as I can be a right bugger according to she who must be obeyed. I'm sure I could have put that better but it is still raw for me at the moment. I try and always be polite and obliging to the nurses, they have plenty going on so some manners and a little light bit of banter never hurt!!
Gareth.
Took ages for my appetite to come back. If you are at Kings the food tasted dire.. the chicken pie was edible!!
Keep positive & definitely keep the haribo humour.
But keep the dancing down a bit just yet!!
Congratulations Dulux, I wish you healthy years ahead and thank God for whoever gave you this wonderful opportunity.
Good luck!
Glad for you. I hope recovery goes well and you have a long and happy life.
Well sounds like your doing amazingly well, yes she must be obeyed as they annoyingly seem to be right.manners go a long way they cost nothing and can make others day go a lot easier.
Am very grateful you've taken the time to reply to me it really helps.
I will contact again in few days if that's ok with you
All the best
Huw
I'm new on here so spelling ect none to good but I'm so happy for you and your family .
How long did you have to wait for your transplant once you were on the list? Great to hear you are on the mend.
I was listed 12 months, blood type O, and my first call I was reserve reserve, due to circumstances, Lady Luck was on my side that day, the co-ordinators say it was my destiny!! Surgeon said my liver was in a bad way and because it's so rare all the team at Kings have been having a look, I'm waiting to see a picture of it, I'm just intrigued, it ain't pretty apparently.
My dad is being discussed at the team meeting tomorrow and they are gonna decide whether he will be put in the list. It's such a worrying, tense time! 😵 I really hope Lady Luck is on his side too tomorrow. Hope you are making a good recovery.
I remember that time awaiting the decision, the assessment is there is ensure nothing is overlooked and it's major surgery they want a successful outcome. I was on the ward next to some people for assessment, I hope seeing me gave them hope.
Yeah my dad was in the same ward as some people who had just been transplanted and recovering and they were saying that they were worse than my dad even at that point and looking at them it was so hard to believe that could be the case. Oh I pray every day that my dad will be able to look back on this terrible time and give encouragement to others that there is hope just like you can.
My thoughts are with you today, there will be a team meeting today and they will discuss all the assessment cases, then someone will call.
It's very difficult to judge how Ill people have been as there are so many different conditions of the liver.
According to the surgeon my liver was in very bad condition, yet when I went in for the call I took the stairs up to the ward.
Stay strong, don't lose hope, you can all get through this.
They haven't called 
they have had the meeting and I called transplant coordinator and they can't give me any info over the phone. It's hell on earth. I am so stressed. Why won't they tell us what's happening? My poor dad is getting worse by the day. He's not even able to pour a glass of water for himself as his mind is so mixed up with the toxins :(. I'm sorry for the rabble. I'm just panicking now. What's the alternative?
Are you recognised with them as someone who they will talk to about your dads case, they were a bit funny even with my wife when I got the call, they may only speak directly with your Dad, it's to do with patient confidentiality laws.
I remember the wait, it chewed me up as well.
Just remember if you dad is poorly this will reflected in his position on the waiting list, this is decided by the team on the back of all the medical information they will have taken over assessment week and previously. They will have a plan on how to move forward listed or not.
I hope you hear soon, remember they don't work 9-5 they understand what this decision means to people.
I really hope so.. They could contact my dads consultant and pass on the decision? I think it will be really bad if we are left over the weekend wondering. thanks for your reassuring words.
We still haven't heard a thing and are fearing the worst now that they don't want to tell us the outcome. It will be Monday or beginning of the week now before we know. Now my lovely dad is very encephalopathic and his kidney function has taken a big dunt :(. In a way I think the confusion for him is a blessing as I don't think he is aware of what's really happening. He said he's muddled all the time.
I know this is a difficult time, but assuming the worst it is not going to put you in a position where you can provide the support and positive care your dad needs, the team will have seen your dad and whatever decision they have come to will have his health as a number one priority. Try not to assume no news is bad news, unless you have specified otherwise they will contact you not your dads consultant, that was my experience.
If your dad is in a bad way his position on the list will reflect this, this will be influenced by all the tests that were done and his UKELD score.
Please don't lose hope, you will need to be strong as just being listed doesn't guarantee a liver in a certain timescale.
Congratultaions on your transplant and wishing you a good recovery from all at BLT
With a shattered heart and lost soul I regret to say my lovely dad passed away tonight. He took a real turn for the worse and his kidneys were failing too and he had a cardiac arrest and couldn't be saved. I don't know what to do. How to begin the day tomorrow, how does life go on with this grief? Love that liver of yours so hard that it never packs in. Love it extra hard for my dad. 💔
I'm so sorry to hear about your beloved Dad. My heart goes out to you all. You are in my thoughts and prayers. Lots of love Lynne xxxx
That is so sad, I wish that I could be writing words about the future and inspiring hope with you instead I'm struggling to even begin to find anything to say. My liver transplant has taught me so much, to have the courage to fight for tomorrow, to have the hope to plan for a future, and to have the time to recognise what matters, my liver will always be there to remind me of not just my donor but everyone I have met along my journey. My thoughts are with you x
Hi Dulux,
How are you feeling now as it's been over a week since I contacted you.
Are you still in hospital or at home
BW
Huw ( 1football)
Hi Huw,
Some days are a little easier other seem a bit harder, I've been home for a week, so I'm 3 weeks from transplant, I've been back into clinic once, it's still sore enough that I'm not frustrated by not being able to do much, having a shower means sitting for 5-10 mins to be able to go again, I can walk out for 10-15 mins, walking is better, can lay on my left side which helps my sleeping. In the scheme of things I think I'm on track, my goal for next week is make it a little further and I can get to a nearby Waitrose for coffee and cake, when it's nice and quite obviously, don't want to catch anything. Aiming next year to do something at the transplant games, it might not be much but I want to get there.
How are you doing?
Gareth.
Hi Gareth
Am so happy things are going the right way for you.home after 2 weeks shows just how well you've done am full of admiration for you.
Hopefully you will make that coffee & cake my fiancée donna works in our local Waitrose & she says his only after the free coffee ( hehe), you have actually made her cry but with happiness as she would like me to be doing aswell as you after 3 weeks.
Am doing good to be honest, if it wasn't for the MRI scans showing my cancer I wouldn't be none the wiser,i can work and do cardio in the gym so am as fit as possible ready for when that call comes.
Little at a time is quite right for you and I sincerely hope you continue to recover well
All the best
Huw
Hi Gareth,
How are you getting on?have you managed to get to Waitrose for your treat yet?
I've just had an appt for transplant consultants clinic come through & another MRI in October so as monotonous as they are at least they keeping eye on me.cant help thinking though that as I feel so well it will take longer to hopefully get a transplant as realise how dreadfully Poorly others are
BW
Huw
Plan is for Waitrose wed/thur as have to go into clinic tomorrow.
Your appointment will be to discuss donor types and sign paperwork, and any questions about transplant, then you have to do all the paperwork again before the actual transplant!
MRI scans are okay, I just always think I'm going to move when I'm suppose to be holding my breath, I got the pictures of my liver, there is no scan that could of prepared me for that, it is grim looking.
Still sore, which is keeping me honest, can almost lay on my right side in bed, so sleeping is better, going to be a while before I try laying on my front.
I don't feel I'm making any massive gains, but everyday small steps and finally in the right direction.
Gareth.
Hi Gareth
Was wondering how your getting on.well I hope
BW
Hyw
Hus
Need my glasses it’s Huw lol
Hi Huw,
Certainly getting there, can walk out now for 45 mins, I should hopefully be able to drive again soon, which should be fine as I have an automatic so won't have to contend with a clutch pedal!
Its great not to be tired in the day, although I have to take on board plenty of calories and protein according to my nutritionist, so thats my current mission, its just awkward around taking pills which have time restrictions.
My work have got me a laptop and some bits I can do from home, so that will help me feel as though I am achieving something in the day, otherwise its a bit like house arrest!
How are you doing?
So glad your doing so well.seems so quick that your going to be driving which must be down to your positivity .
Am good thanks,was at clinic tues gone and there very happy with me, to be honest if it wasn’t for MRI showing the tumours I’d never know I’ve got them.
They say they want to be so sure that the liver they use is better than the one I’ve got so it could be a long wait.do feel a bit of a fraud at times when I see how poorly people others are but at same time thankful I can function normally.got next scan on 17th so will know how liver is compared to 3 months ago so fingers crossed nothings grown or another has appeared.
Hope you continue your road to recovery as well as possible Gareth
Take care
Huw
Don't no you but I'm so happy for you I wish you all the best from my heart .
Listed for transplant
Transplant
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