Assessment Complete

Assessment Complete

Its just a waiting game now.....

So I had all the tests and told that I was in really good condition, my blood test have all come back good but they are deceptive because my spleen and kidneys are working there butts off to keep me well. They also said that it wont progress like some other people but will deteriorate very quickly.....that when I have relapses my liver stops working completely, so they agree that I need to have a transplant but they now need to decide when, if they put me on the list no there is a 2 year wait anyway and if they wait the waiting time will just get longer and I may relapse during that time.....

So we shall keep our fingers crossed and hope they decide to go ahead now, if not then it is what it is.....

It did get pretty boring at the hospital and a bit over whelming but I tried to keep my spirits up.....

28 Replies

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  • Yes just wait. It's really all you can do. Just try to not put things on hold and live your life would be my suggestion.

    My understanding is that the 2 year waiting list is not entirely true, except on a first come first serve basis. You will be moved up and down that list depending on your own condition. Things get worse you get moved to priority!

    What are you drinking? Must be really bad.

  • Lol, that was the nose clip from the Lung Function test - I kept it as a memento :-) I was messing around with my mum.....but I was drinking a lovely hot Latte!

    Yes I understand that. I'd rather as would everyone else I'm sure be sorted within the next two/three months!

  • Hi Chelle good to hear it went well ,,, sounds like they did a thorough job on you ,,,you look very well in your new pic which is nice to see,,,hope they get you on the list soon ,,,i need to look into this also ,,,Hep on the 7th..be good stay strong and all the best Matthew ps you do realice you have a clothes peg on your nose lol,,,xoxo

  • if you get assessed your have one too for your lung function test......I just kept it, they don't have a souvenir shop where you can get magnets or key rings so the nose peg had to do! x

  • Chelle, So glad you got through it all. UM if, and only if you are up to a few lines there,s a lady whose mum is In hospital at the moment and transplant her only option as I understand it. Her name is Rosie and her post is " info on transplant assessment". She is obviously feeling quite alone with this and desperately seeking advice/information from folk going through the same so as to have at least some idea as to what to expect for mum. I,ve been blundering around trying to be useful but she really needs pointing in the right direction by someone who knows what direction to point in!. Anyway, just a thought if you had the time and energy. As I said I have been looking out for updates on you. I take it you finally had to ,fess up at work, I,d like to know how that went down chelle. You, " forgot to mention it" at your interview, that had me in stiches, no pun intended. That,s the sort of thing I would do, " minor details I call them!. Best wishes to you, I appreciate your great humour it,s what keeps us all moving forward. anne x

  • Hi chelle , just seen your pic and read your post . Can I say you look really well ! And I was with wondering what that thing was on your nose lol , I thought you were using it as you didn't Like the smell of your drink haha . I have stage 4 liver disease so Cirrosis .since 2008 . Few relapses along the way . I too worried a lot about how long I had to live etc .. But after reading other people's posts since I joined it has lifted my spirits , non of us know when it's our time to go so to speak . So I now live each day doing whatever pleases me .. Oh and bookies vip tickets this morning to see take that lol . Not cheap either ! Met peter Andre this year and his brother Chris , so keep that lovely smile and positivity as I am sure all will be fine . Best wishes Linda . Will be looking out for any of your further posts

  • Hi, I hope your wait is not too long, my wait was only 8 days. Good luck.

  • Good luck you are on the list and that's great news 😊

  • Hi there, I love your attitude. Thank you for being so positive. I have a lot on my plate right now too and you just lightened my spirit. My spirit says says "chellie" I love you, I needed that, now I will and can go forward with more peace." Best to you lovely lady. Aloha

  • I'm sorry to hear your having a roughy time of it. None of this is easy, if I don't laugh then I know I'll cry......I pretend I'm normal

    Most of the time....I get in to a slump sometimes when I sleep too much so I try to stay active as often as possible. I do hope you feel happier soon!! Xx

  • You actually look great! Sorry to hear about all this re yourself/the waiting must be so hard on people; i hope everything goes well and there is no relapse. xx

  • Hi ya im glad your assesment went good got mine in another month so all the best sweetheart and hope its soon for u bri

  • When I was in for assessment I thought they were going to put me in the cooler! I'm not used to being caged up.

    I'm lucky at the moment I have so much going on in my life I don't get a chance to stop and think, so the time on the list is flying by, they will call when they want me.

  • it is a long couple of days - although when I was on my way home I was surprised how quick it all went. Well yes I suppose I am the same, I work full time so as long as I have that then were deal with it when/if it happens. How long have you been waiting?

  • August, so not long was told 12-18 months for a good un for me, at the moment apart from the usual feelings I'm doing all right, I'm just going to get on with my life the best I can and if I can get away with wearing a tutu when I want then its all good, oh you will have to find my facebook site for that to mean much, but happy finding!

  • Seems it all going in the right direction just have to wait for the call to tell you if your going to be activated for a transplant , you wouldn't know you were poorly by your photo , I lost loads of weight looked like a zombie ! Are you eating well n drinking plenty . Your doing the right thing by staying positive,it can n does wear you down .you say you keeled your nose clip as a souvenir the best ones yet to come ! Look at my scar everyday n feel so humbled to be here very blessed.hope you get told that your going on the list asap like others say use this site it's amazing , even more so after transplant plus all the stuff you may not remember at assessment,someone will know on here I thought I remembered a lot but was amazed how much more I learned on here , good luck with everything n keep smiling n the world will smile with you x

  • Thank you, I work full time so don't have the time to look ill......I also wear good make up! weekends I don't look so great and this photo was taken after a long hot shower. A lot of the time I am ok, get a fuzzy brain a lot so my computer is covered in post-its to remind me what I have been up to.....

    I hope things happen soon. I don't like waiting....

  • All the best sometimes we have to wait for it all to come good , I still looked crap with make up on 😬😬x Your a star keep shinin x

  • Looking so healthy is such a positive for the team to consider - means you are ideal for going through the difficult procedure of a transplant. Its a strange position to be in, you need to be well enough for the surgery and ill enough to need it !

    As for the wait, as you can see brummie waited 8 days and there are others here who got their 'call' really quickly. My wait was two weeks which helps as I didnt have lots of time to dwell on what was to come. So be ready to go from the day you are listed.

    Good luck and keep as well as you possibly can. Follow to the letter the dieticians instructions and make sure you get lots of exercise ( even when you really don't feel like it )

    By the way - I kept the nose clamp as well ! They wouldnt let me take the treadmill !

    Jim

  • So They called yesterday and I am listed.....I don't really know how I feel.....people keep congratulating me....I find that quite strange!

  • Hi, I was listed 3 weeks ago, find it strange waiting for a fone call which will change my life so much. Feeling good at the moment & try to stay positive but can get me down at nights when I think to much, but as people keep telling me it's a step forward.

    Stay positive with me regards & thoughts are with you

  • Thanks Mick....I honestly feel great; still working full time - need to tell my boss today - ha wish my luck - might be singing on tomorrow....lol

    I hope they call you soon; which hospital are you listed with?

    Good luck and try not to dwell and private message me if you get to thinking too much. x

  • waiting for that call took over my life. Every time the phone rang it was sheer panic. Stay strong. With me i had a false call Easter Sunday at 5am. Then i went to clinic on Tues 19th April i was shattered that night when my mobile went at 3am on the dot. Probably the only day i wasn't expecting it and had unpacked to repack So had to throw everything bk in. Thinking of you both and pray 🙏🏻 you get ur gift soon. Xx

  • yay that's out of the way now. The list isn't as it says. You will be moved up as needed going off bloods and physical symptoms. So pleased that's done with for you now it is a bit boring isn't it? Great pic btw. You look great 😊. Stay as healthy as possible and stay strong. Big hugs xxx❤

  • Thanks Sheri, I plan on staying as positive as I can...but because I block things out when I talk about it I get teary - I don't look good when I cry either but of a tomato that might explode! lol

    Hope your well. xx

  • awww sweetheart i understand. I also was so teary before and after. It's so much for your head n body to cope with. Im sure even the colour of a tomato 🍅 your still pretty. Keep on doing what your doing and stay strong and smiley. Lots of ❤ xxx

  • Hi Chelly we are back from our ventures, just to say it was good to see you during assessment, it helped to see a familiar face at each waiting room. assessment is such a test of patience and energy for all concerned. Anyway, he has been put on watchful waiting so is really pleased with that, he has done so much work to get fit over the last 6 months. How do you feel about your outcome?

  • It's was a long old two days, I'm quite shocked that I got listed to be honest but now it's just a waiting game. I've had a few days to think about it; although I'm Not sure that's helping however it is what it is and I will come out stronger the other side! Excellent news that he was put on watch and wait from what you have said he really has turned his life around!!

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