So that's where we're at. 500 days.... 17 months. Ever feel like your the last one to be picked for the school team?
I'm tired. I have thought more about coming off the list in the past months or so than I have before. Just to feel like there is something more to my life than waiting for a phone to ring that never does.
Everyone says they know how you feel and they really don't - not unless it's you guys.
There we go - I dripped, moaned and been a bit sad. Time to pain that smile back on and pretend everything is perfectly normal - because that's what we do isn't it!
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Chelle_
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I really feel for you. I suppose one way of looking at it is that you're well enough to carry on. Only after his xplant did my fella realise that without it he wouldn't have lasted much longer. We just thought he'd been lucky not to wait too long but actually he needed the op when he got it.
I know I am so lucky to be as well as I am - I don't even know why I get sad about it. I think I just miss who I used to be and know it'll be a long time before I am that person again....Thank you for the message x
Yes I no that one what where when will the person I used to be long time different illness after shock of life is this it no we carry on in private hell
Hopefully it’ll be soon sweetheart then you’ll be sorted.x on a personal note I went for the listing and got a knock back for a year they said I wasn’t fit enough and needed other things sorting first otherwise I wouldn’t come through it. So now more tests just like yourself fed up with it all tbh,but you’re there so you will get it . Xx
I hope you are doing better now and have turned a corner. I was moaning for no reason - last week was a rubbish week and I just think I am on the tail end this week. x
Thanks Guys - It'll be coming up to your one year wedding anniversary soon wont it? x
I really feel for you Chelle, if I didn't need mine so much I'd let you have it. Chin up girl. I'm now playing and dedicating this song to you... Led Zeppelin's "Your Time Is Gonna Come".
Yes. That is what we do. I’m sure you have a lot of mixed emotions. Think you need to speak to your consultant or a transplant coordinator?? I bet everyone on the list has good and bad days. Get some support Chelle. You can’t be strong all of the time. Take care xx
I do talk to them, well my doctor at my appointments - I just never seem to talk to them when it's important. I last spoke to my tx coord when I did my assessment. every time I email or call no one comes back to me. Thank you x
I have It's in with all my paperwork. I'm ok really - Just having a moment. I even ate a yum yum - to make me feel better - I didn't help just made me feel sick! lol x
Chelle what can I say except it’s bloody shit there said it, it is a long time no getting away from it and your certinally entitled to shout,scream,swear just don’t punch the wall it proper hurts and your quite right lots of us on here know what it’s like waiting waiting waiting for that poxy phone to ring but it’s you you’ve got to think about it’s you that’s hurting so it’s gotta be you to let off some steam,that call will come so please don’t even consider coming off the list you must stay strong.
Lol, it is shite! really shite. I am not one to not have control - I like to know when things are gonna happen - I am a very organised person and this goes beyond all my organisational skills! lol....
I shan't come off the list, I just have moments where I want to be with my family but can't because I have to have this transplant you know the story x
Hi, Chelle. That is exactly how I feel and it really gets me down. I've never been 'backwards coming forwards', in fact I suppose you could call me confrontational. I hate just sitting back waiting for the inevitable without being able to front it. It's almost as if everything is laughing at me because it's got the upper hand. But I refuse to be beaten, ( I don't take second prizes,lol) and I'm pretty sure that you are much the same so stay strong and take care. I actually think you're inspirational. Sorry for moaning.
ha ha - I had some cake last night think that put me in a better place x
Hi
I hope that call comes real soon. You deserve some good fortune. You are always there with good advice. If ever you need a shoulder to lean on I'm here for you.
I feel shit but I've been told I'm not poorly enough for it but I'm finishing work on ill health retirement!!! Take care Xxxx
Hi Guy’s, newbie here, hope you are all as well as you can be.
I was diagnosed with cirrhosis 2 years ago now and I’m surprised my head hasn’t just exploded by now, you are the first people I have ‘spoken ‘ to about this in my whole 2 years, nobody has pointed me in any direction of support etc and there is so much I need to know. I hope I don’t appear selfish.. I don’t mean to be ‘ I need, I want’ I will most definitely be here to see you guys a lot now and see where you’re all at, obviously offer any advice on anything I might have in this busy street of a head.
So I was very very sick 2 years ago, I drank every night but not into absolute drunkenness it really was just a habit formed from avoiding going to bed with my abuser then when he finally left the habit stayed, still night times and still regular. I didn’t feel slightly unwell then I went to Egypt for 6 weeks and got what I presumed was food poisoning, constant vomiting and the trots like you wouldn’t believe. It didn’t go away for the whole 6 weeks, ( I didn’t drink I just couldn’t, I couldn’t eat) I went to the hospital when I got home and it was put down to something gastric, this gastric whatever went on and on continually for over a year doing camera tests down up different meds etc.
One day I got really sick, my legs went big I was confused and scared, I was rushed to hospital and after many tests scans etc they told me I had cirrhosis and about 2 years to live. Obviously I was absolutely terrified, I have not touched a drop since and I’m not even positive it was the alcohol but that’s neither here nor there, I went for my transplant assessment pretty quickly and they decided it was not in my best interest as although I am relatively young (I was 41) and have 7 kids I have no support network, I grew up in care and my mother died quite young of ovarian cancer, I live in East Sussex but my father lives in liverpool and is 67, I only have my abuser around me so they said I wouldn’t manage post-surgery. My after care since then has been extraordinarily limited, I have not seen a specialist since last August because kings thought Eastbourne had taken over care due to not getting back to them after an ominous scan, and Eastbourne presumed kings had taken ove. So I get a bag of medication to my door once a week and that’s my care.
My worries are I don’t know if I’ll be aware it’s time for surgery, what if I don’t know? What if it’s too late for surgery by the time it’s spotted?
I have a rare blood group and no relatives with my blood.. the line stopped at my mother who has passed so I’m scared even if it is spotted I’m too weird to get one
Obviously my next concern is sorting out regular medical attention I spoke to pals they didn’t even call me back, I literally don’t know where to go who to turn to who to talk to, I’m just shocked that they told me I was going to die and then not kept up with my medical plan.. there is no plan
Sorry for the huuuge essay I just hope I’ve got out what I needed to .. to see if anyone has any pointers for me.. is this all normal? I really don’t feel that it is x
I think the first thing you need to do is go back to your GP and start your referral process again - this time take someone with you to listen to what they say - let us all know whats going on that was we can be your support.
I’ve lost all faith in the doctor he really is an idiot, kings found something suspicious on the last scan way back last year some time and requested the gp organise an emergency ct, it took me 6 months of badgering and eventually arranging it myself after he shouted at me ‘ I’m not your PA chantelle you need to arrange your own scan’
I finally called a private hospital for a price and booked in, I then called Eastbourne scan department and said I no longer need the big rush for the scan that never was as I’m going private and then I’m going to the newspapers.. they called me later that day with 2 separate scan appointments out of thin air, I don’t feel that I have the energy to repeatedly organise my own medical treatment.. I’m not qualified 😒
Head up hon sounds like a good nap is past due. At your age you have time to enjoy a long fun life , Don’t let the crazies feelings win, your very strong I know it feels as if it you can’t get your turn. For me and my family I wouldn’t want to get anything somebody younger could benefit longer for.i have a great ride and they can study me all they but I am going to give it hell until they take my keys away. I don’t drink or do drugs and not real good at giving a dang about the diet I try but some of those ideas I would rather pass. Your next watch and see
Hi Chelle, keep the faith it WILL happen. I was on the list for 18 months until the perfect (their words not mine) organ became available. I was prepped, taken down to theatre, procedure commenced and then I suffered a major haemorrhage which took 25 pints of blood to enable them to stabilise me enough to get me up to ICU. There my wife was told that my chances were practically zero as a healthy liver would struggle to cope with that amount of fresh blood, thus a diseased one had no real chance. My prognosis was 12-24 hours and even if I came round, I would never leave hospital. I spent 12 days in a coma, eventually regaining consciousness on my wedding anniversary. I was discharged about 2 weeks later. This was all in November 2016, so 12-24 hours has become 16 months and counting and when I have asked “why am I still here” I am met with a smile and a shrug of the shoulders, followed closely by we don’t really know. I am in rude health, haven’t stopped travelling, in fact I am off to Singapore in a couple of weeks. The mind is a powerful tool, and although the frustration must be growing as it was with me, I eventually came to the conclusion that it would happen exactly when the time was right. As soon as I accepted that I practically stopped counting the days and began sleeping like a baby. The one huge positive to take from your situation is that you remain reasonably healthy, albeit going a little stir-crazy. Focus on the good things going on right now, and the way things could be in the future. Despite being left with my “old wreckage of a liver” life is good. And at times I just wonder how different my life would be if I had the transplant. How would I get on taking all the tablets (the worst tablet taker in the world), would I be in a position to travel. So for me, and I am only talking for me, maybe, just maybe I actually didn’t get the bad rub as some others would see. As I started KEEP THE FAITH.
What a lovely story - I am sorry you had such a hard time but I am so happy your wreckage of a liver is working as it should and your getting to live life - that's what its all about isn't it! xx
Am so sorry you are still waiting - it's about time life was a little kinder to you. My husband was so lucky in many ways and although the transplant didn't cure everything physically he a lot better now. I do hope you get the call soon but don't come off the list - it took over our lives for only a few months God knows how we would have coped as well as you have. Sending love and a big hug - I think you are truly an inspiration. Kim xxx
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