Transplant list

I had the phone call yesterday from Papworth hospital to tell me I am now on the waiting list for a single lung transplant. My bag is packed and waiting in the spare bedroom. I am on a mission now to eat whatever I fancy to gain some weight. Many of you will know how difficult this is, due to lack of appetite and tiredness. Emotions all over the place, knowing what it will cost someone else. It has been nearly a year since the doctor at Royal Brompton said he would refer me to Papworth and up till now I have pushed it to the back of my mind. But as soon as I had a 3 day assessment early in December things have moved on and it is, of course, the biggest thing on my mind. I need to push it back again and get on with living.

I am very grateful that I now have another choice.

32 Replies

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  • Hi Linda,

    You must have really mixed feelings about the whole transplant thing. You go for it girl. You deserve it. Everybodys here to talk you through it. We got your back Linda.

    Good Luck,

    Rubyxx 😇

  • Hi

    Thank you so much for your reply and encouragement.

  • Pleased for you Linda. But no wonder you are feeling emotionally churned up.

    Not sure what to advise about putting on weight. I also tend to lose too much but i have always had a giant appetite so I can just about keep up with it.

    What about puddings with ice-cream, meringue, cream, chocolate? Do you have access to a dietician? They are quite good at problem solving like putting on weight when you have no appetite - its certainly a good goal while you're waiting.

    Let us know when your date arrives. We will all be rooting for you. Take care :)

  • Thanks for your reply. I appreciate the good advice about the eating as well.

  • Hi Linda. I would have given anything for my Husband to have a lung transplant. If you don't have it they will give it to somebody else. You are as deserving as anyone. You go for it without any reservations. I've been following a man who had a transplant before Christmas and is doing so well. He was even allowed to go home for a couple of days just after Christmas. They had their Christmas then. He is now home permanently. I hope this makes you feel better about it. X

  • Hi

    Thank you so much for your reply. It is encouraging to hear about other people who do well following a transplant.

  • Hi I'm going to wish you the very best and I do hope all gos well for you, I know I can't have this not sure why but both doctors have said most definitely not ? There are so many supporting you from here it's wounderful,we are all here to cheer you on x

  • Thanks for your reply. Sorry to hear you were turned down. Whatever problems anyone has, there is always good support and excellent advice from this site.

  • I think congratulations are in order Linda. I doubt the docs would put you forward if they had the slightest doubt about your suitability. The costs are horrendous too and they take everything into account. I'm saying this because my nephew had a double transplant two years this month and his parents were up to speed on everything.

    My nephew has never looked back and leads a normal full life now.

    You just need to take very good care of yourself and follow the docs orders.

    It is very traumatic for you and I know you are very scared but take heart if you can. It is all worth it to breath easy again. And then to run and dance and do all the things you once could without thinking about it. Take care sweetie.

    Sara xx

  • Thank you for your response. I was so glad to read about your nephew, this is really encouraging.

  • To gain weight get a special drink, think may be available on prescription, if not ask the pharmacist. Got it prescribed for my mother who stopped eating or ate very little because of Althzeimers and it helped her.

    Body building products such as whey powder are also good, stocked in most healthfood shops and also available on the internet.

    Go for it girl.

    Big Hugs

    Tazzy2

  • Thanks for your response and good advice. You can always rely on the friends here. They are much appreciated.

  • Hi great news for you stay positive you will get the call and get a chance to improve your life. So fingers crossed for you it will all be good

    Godbless

  • Thanks for your reply. As you say, fingers crossed. Hope you are managing to keep as well as you can.

  • Thanks for your good wishes please let us know how you going on

  • That's good news. Wishing you all the very best for the op.

  • Thank you for your good wishes and I hope you are keeping as well as you can.

  • Hi Linda, scarey I know, but fantastic news, don't dwell on the thought of how it comes about, I carry a doner card ( not that anything is much cop I don't think ) but if it helps have it lol. There are drinks and soups on prescription but to be fair not the best tasting, try making ur own smoothies with full fat milk, fruit even a dollop of ice cream in it make it nice and thick ( if u like it that way ) anyway, keep us posted and best wishes. Xx Sonia xx

  • Hi

    Thanks for your reply. I also carry a donor card. Thanks also for the advice.

  • People who donate organs because of the love of their fellow humans We all go in the end but it's nice if we can help others enjoy their lives.

    When I was in hospital last year and lot a lot of weight my doctor gave me a prescription for Complan and it did help me put on weight quite quick. I got mine for free being over 60 so check the price if you don't get free prescriptions.

  • Thank you for your response. There seems to be lots of build up type drinks available so if I can't manage to increase my weight by eating more fattening foods then I shall go down that route.

  • That's fantastic Linda well done. Build up drinks can be good - my mother liked Ensure and got it on prescription. They are very high in calories and have all the vitamins. x

  • Thanks for advice coughalot. I usually cough a lot too but recently have been under a respiratory nurse team who are helping me with this. Best wishes to you.

  • All the best to you i know the emotion turmoil you must be in, but whoever decided to donate wanted someone to reap the benefit of better health and that person is you.Good luck my friend will be thinking of you with great affection.xxx

  • Thank you for your kind words.

  • Wishing you all the very best Linda, you are one lucky lady. Keep us all posted. xxx

  • Thanks for your reply. If I get the important call and I am able to, I certainly will keep you posted.

  • Excellent news Linda, What a long wait you have had,but just think when you are over the op., how much better you will feel. Let's hope the next stage will come soon, Waiting is almost worse than the procedure. Look forward to hearing that you have got the go ahead, very best wishes. bulpit

  • Thanks for your reply and the encouragement.

  • my friend had build up drinks from docs before he had LVR good luck and all the best x

  • Thanks for reply and advice. Build up drinks seem to be top of the list for weight gain.

  • Hi Linda I can't imagine what's going through your mind every time the phone rings your hart must miss a beat I really hope you get that call soon sending you all the very best wishes take care and have a big fat cream cake for me.

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