Signed my life away

So I am just in my way home from a kings, all Consent forms signed. I have another scan in January MRI and another appointment with the consultant...he told me about the different types of liver I could receive (not like an Argos catelouge) and then told me I didn't have much option as to what I received....like I would have been picky....I think I need to start recording what they say tonne as I seem to forget as soon as I walk out of there rooms. He said they needed to make sure that my Portal vein Doesn't collapse because this will rule me out of a transplant and they will have to think of other options, he said it didn't give us much time....see that's where I should have asked -'what do you mean by that' lol I just said ok! πŸ™„ He said he hopes to see me in theatre very soon - I don't imagine he was taking about taking me to see 'phantom of the opera....' so the wait goes on.....

I hope your all doing well...

Chelle

P.s Denmark hill STINKS today 😷

24 Replies

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  • one step closer hunny. I don't remember much of these conversations either. Apparently my dad does. Kinda glad i didn't. Well looks like ur finally getting there. Thinking of you πŸ’— xxx

  • Thank you.....everyday is one step Closer right! I just wish that closer was the next couple of weeks not years! Xx

  • you will be there sooner or later honestly. πŸ™πŸ» lots of love xxx

  • So pleased for you Hun , sounds promising to me that they want to get that new gift for you , I don't think I would even understand half the stuff he would have said to me , I did wonder when you said about chosing a liver lol . That's when I had visions of the catalogue . Well your another step closer πŸ˜€. Positive thinking ... Great news .. Hugs πŸ’•πŸ’ž.. Linda xx

  • Thanks Linda, I was quite disappointed he didn't give me a book to look though - like choosing your next tattoo! lol....x

  • Lol ! It's great to see you so positive Hun 😊. I have every faith that things are all going to be good for you πŸ™πŸ»β€οΈβ€οΈXx

  • Hello,

    Wishing you all the best...

    Lots and lots of love

    Pear

  • Thanks Pear! x

  • Well it's a step forward to getting right again, I did forget a lot I was told so now my wives comes with me to keep everything right. Which page are the livers on in the Argos book ?

  • Mick - I'm interested in how many wives you have? did you choose them from the same catalogue? :-) x

  • Good luck!x

  • Thanks Matt Hope your feeling a bit better.x

  • Chelle, I have been with wife number 2 for 16years & was married first time for 17 years( she still loves me) 2nd one is standing buy me through all of this & has been a great support & deserves a medal the size of a frying pan

  • I say the same about my other half....sticks with me even though he didn't need to. it must be hard for them - maybe more so than it is for us. And your right they deserve medals, but we'd also all do it twice over without a second thought for them!

  • Wishing you good luck, King's is the place to be, despite the smell on Denmark Hill! The waiting time I am sure will fly by and I will be thinking of you and waiting for your post to say you're on your way to your new healthy life.

  • Great news..xx

  • Yes there's a lot to take on board. Most of it just informational, there is that feeling of it all being out of your hands. Basically where you are right now, all you need do is stay as well as possible. Low salt, high protein stay as fit as you can is about all you can do.

    Being told you may not make is all routine, managing expectations I suppose. Some people don't make it but it's pretty pointless dwelling on that. There's plenty of us on this forum who've been there done that and are now fit and healthy again. I've seen at the kings Liver Outpatient you can even buy the T-Shirt!

    In many ways it's reassuring to hear of people on this forum having almost the exact same experience as me. Kings, Todd Ward, Denmark Hill, have you come across Dr Agawal yet? I used to dread him, he'd tell me to get out of bed and make an effort, and for me was always the bringer of doom and gloom.

  • I forgot one vital question when I did mine, I forgot to check the small print about any warranty!!

    Ooooh get you an MRI in jan, all I got is a dietician appointment, I think I'm going to get a sticker for being good as I put on 7kgs. So it all sounds good, just be nice to your portal vein and it'll be fine. x

  • So this might be the most ridiculous question I have asked yet - so I will keep it to a comment within my question - I'm a chicken for ridicule like that!!

    Has anyone asked or been told where they are on the 'list' (this isn't I imagine as fun as Santa's list although I do imagine if your naughty your moved down the list a bit... :-P

  • No question is a daft question - best to get the niggles out there and away (less to stress about).

    The thing with the list is it isn't a league table where you move up with waiting time or anything. You might be at the top of the list one day but someone in higher need will always jump above you.

    When a hospital phones that they will have a potential liver available for transplant (i.e. someone is about to have life support ended) they will contact their designated transplant unit with the donor type (brain deceased, cardiac deceased, large stature so suitable for split), donor blood type and donor physical size.

    Your transplant co-ordinators then look at their waiting list and match the donor liver to the most poorly patient who matches the donor liver most accurately (blood type, body size and what type of liver they've said you'd be suitable for i.e. my hubby was blood group O+, small stature and suitable for DBD, DCD, SPLIT LIVER).

    So, there are lots of variants - you might not be the most poorly person on your blood group list BUT you might be the only petite person that the organ would fit so would get the call or you might be the only one large enough to receive that donor organ depending on how it goes.

    I guess it's only when you start getting calls do you realise that hey I'm pretty high up this list.

    All along we knew hubby was at the bottom of the list 'cos apart from lifestyle stuff (chronic fatigue and minor HE, obliterated varices) he was fairly symptom free (no jaundice, no massive HE, no ascites) - after 10 months he was removed from list 'cos he no longer met transplant criteria.

    It all depends on your blood type, body size and how poorly you are. Super Urgent patients always get first (in fact they get first dibs on any liver that comes available in the whole of the UK).

    I know it's an anxious time but do try to somehow put it at the back of your mind, live life, look after yourself and keep yourself as fit and active as possible and hopefully your call will come in good time and all goes well.

    Katie xx

  • Oh Katie; thank you. You answered all of my questions and more. Are you a spy within the hospitals? It amazes me how much there is to learn; even after transplant I'm sure things will bewilder me.

    I hope your husband is feeling well and you are doing well.

    Chelle

  • Just been going through it for nearly 5 years now with hubby. I'm his eyes and ears and interpreter of all things med speak because he doesn't take it in - also done a couple of online courses so it helps you get your head round things.

    Hubby actually feels no better now than he did back in April 2012, still suffering fatigue, sleep depravation and lack of physical energy or drive. None of these show up in blood test results & all his LFT's more or less normalised following the embolisation of his spleen so he doesn't score enough to qualify for transplant. All the medics are keeping a good eye on things for any signs of deterioration and we trust they'll look again at his transplant eligibility - he's in a very small number who come off the list because they are doing too well so I guess that's a good thing. It took us a while to realise it because at first we saw transplant as his light at the end of the tunnel and a promise of a happy ever after.

    We make the most of the good days and just go with the flow. I am able to leave him a bit now so I've resumed my self-employment a bit and my voluntary work so that's been beneficial to my sanity.

    I do hope your call comes soon and that it all goes swimmingly when it does and you get to resume life to the max. We just hope for the same when/if hubby needs it again.

    All the best to you, Katie xx

  • I hope you get your call soon Chelle 😊 As Katie said list changes all the time , it's so difficult though to think of anything else other than when your going to get that call , take care x

  • Hi Chelle,

    I've been on the transplant list for nearly 3.5 months. I was going stir crazy for first couple of weeks trying to get my head around the "how long will I wait" and "where am I on the list" etc. People on the forum were great advisors and somehow you DO settle into a natural pattern of trying to put it to the back of your mind. Pack your hospital bag, organise a plan with pet care and child care (if you have children) and then try and stay as fit and well as you can.

    My bloods and bilirubin are through the roof! I'm very jaundiced, lack energy, have to have afternoon naps most days but I always drag myself up and walk my dog around the countryside for a couple of miles a day to keep fitness up.

    If the telephone rings (especially in evenings) me, my hubby and twin boys all stop in our tracks to see who it is but I guess that's a natural reaction

    This is a great forum. No one on here can give us the medical answers we need or when the call will come but I do know the support and care and love is what gets us all through this.

    Whether it's someone one the list or had a transplant or a friend or relative with their experiences.

    If you want to message me, feel free. Much love Nicki πŸ’ž

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