Anyone have a child on transplant list?

My 10 year old son has pulmonary hypertension and pulmonary vein stenosis. He has had lung transplant assessment in august this year. The doctors feel it is time to put him on the active list however are unable to give us a timeline without transplant as they have no way of knowing how quickly he will deterorate further, just that he will. he is currently on oxygen and very restricted activity wise.

We are having a hard time as parents making this decision so thought that it might be good to talk to others in a similar situation or who have gone through this.


31 Replies

  • Dear Claire. How very very difficult for you all. So sorry. Can't really help but everyone here will be wishing you the best. My only connection is exrtremely tenuous: my lovely Greek consultant was a specialist in paediatric pulmonary hypertension. I am very glad he is now my consultant but he must have lovely with his patients and their parents. I hope you feel confident with the doctors you and your son has.

    All the best

    Kate xx

  • Thank you for taking the time to reply anyway Kate. His doctors are really good but just don't have anything to compare him too xx

  • Meant to say that my lovely Greek guy, now in Sheffield, was at Great Ormond Street. Is that where your son is being seen now?

    K x

  • He is under gosh for the hypertension but they hold a satellite clinic at the freeman hospital in Newcastle x

  • Both excellent hospitals. It seems that he could not be in better hands.

    K x

  • I also see him and he is fantastic x

  • Yes! I hope to be seeing him soon.

    Kate x

  • Me too x

  • Claire sorry can not help you I can not image what you and your husband are going through. I do hope your son will not have to wait long before he is able to have his transplant, keep strong. I do hope someone will come along on here soon who may be able to give you the information that you need.

  • Thank you for taking the time to reply. There aren't a lot of paediatric transplants of lungs only about 6 a year in the uk but hopefully this may reach someone with experience x

  • Thinking of you and your wonderful son Claire and hope is out there. My heart goes out to you all. Xxxx

  • Thanks sassy xx

  • Clare for what it's worth, a boy from where I live in Ireland, had s lung transplant at freeman'a last year. It was reported on the national TV news and was a huge success. The report came a few days after the operation and he was sitting up in bed, chatting and smiling. Children are strong and much more resilient then adults. Hopefully your son will have the same result. The boy here was about 13.

  • Thanks billiejean xx the freeman are great he couldn't be in better hands I'm sure. It's good to hear positive stories I pray my little man is as fortunate as that boy

  • What a worrying time for you and your family, Claire, and my very best wishes for your precious son. GOSH is a wonderful place (and my family is very grateful for their care of my granddaughter) and I am sure they understand the dreadfully difficult decision you have to consider....would they be able to put you in contact with other parents who have been in the same situation? I do hope you are able to find someone who has been through this to share your questions.

    Everything crossed for you all.

    Tee xxx

  • Thanx tee x I'm sure the transplant team will possibly be able to put us in contact with someone. It's very early days for us as it's just been in the last 2 weeks things have become more imminent . I kinda have my head round it and know it has to happen but his dad is still in a bit denial... Thinking it might be better to do nothing for now and wait & see. From my point of view I don't want to sit and wait for him to get worse before acting as we all know that wait can be years as it is and he's already deteriorated significantly in the last year x

  • I think that's an excellent suggestion, Tee.

  • Hi Claire

    My heart goes out to you, your dear Son and family. I have just had a quick look on some cf sites as it seems more likely to find a possitive story of transplantation amongst children amongst our cf brothers and sisters. I was looking for a blog but I am not very IT savvy, but thought a cf forum may be helpful.

    I hope you find some positive information. Excellent suggestion from Tee.

    All good wishes and hoping for a great outcome for you all.

    Love cx

  • My love & prayers to you & all the family,at this difficult time for you.

    I do hope that the hospital may put you in touch with other family's,that are sharing your experience,

    Wishing you a positive outcome for your precious one,do keep in touch when possible,Wen xxx

  • Thinking of you, your husband and your little boy. It must be a desperately hard time for all of you.

    Wishing you well. Sue x

  • Oh Claire how awful for you and I am so sorry you have to make decisions no parent should have to. At 10 your son is old enough to understand much of it. How does he feel? x

  • to be honest other than knowing he needs a lung transplant he is very guarded at talking about his feelings or asking questions. He still needs to have that conversation with the transplant the moment his response is just "whatever happens, im not really bothered"

  • ⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️⛔️


    Remember there is no right or wrong decision, which ever way you go you will always question did we do the right thing.

    My thoughts, wishes and tears for your impossible situation, are with you all, - tenter


    I am not in your position, but, I have successfully just gone through the assessment process for myself (last week). The option to go on the list, or not, was a heart rending decision for me and my wife, I cannot imagine having to make that decision for a child.

    For me, MY options are relatively simple: 1. Lie in bed (walking more than a few steps is difficult) and die gracefully (hopefully in good humour), in a matter of months, or , 2. Go on the list and hope a lung comes my way.

    From the outside it sounds a easy decision, ok I go on the list. However, what is not so obvious is the complications that having and living with a transplant can bring. Almost guaranteed rejection in the first year, anti rejection drugs that need to be taken at specific times every day for life, these drugs reduce the bodies immune system giving less tolerance to infection, and of course, it is major surgery with a chance of death. Then, of course the transplant will only last for a limited time, hopefully for a few this may be a few decades and the majority will get past 5 years.

    All this doom and gloom, has to be weighed up with the things that I could do with a successful transplant, walk, take photos and travel the world (hopefully). To loosely quote sibkev who had a transplant within the last year, "I now am walking 3-5 miles a day and riding a mountain bike". I hope I will be able to match his achievements, if, I get my chance.

    I hope that gives a small insight into how difficult it is to make this decision.

  • you have hit the nail on the head does feel like an impossible situation obviously wanting that chance for him to live as a normal healthy child for however many years is a no brainer but you have to balance it out with all the risks you mentioned lifelong commitment to medication and indeed getting past the first year. We are just terrified of making the wrong decision

    thankyou for your insight

  • Sorry to repeat myself, but, there is no wrong decision. You will make best decision you can, I just hope you can agree.

    One thought would be to get put on the list, then,decline the transplant if your son is still doing well when a transplant is available. Of course this would have to be discussed with the consultants and transplant coordinator.

  • Thoughts and prayers for your son, Claire, and you and your husband during this difficult time.

  • thanks ergendl

  • Claire my heart goes out to you and your family as this is such a terrible situation for anyone to find themselves in and even more so for your young son. I'm sorry I cant offer much help re transplants for children but have just been for an initial appointment regarding transplant myself at Wythenshawe last week. The whole thing is so very daunting and there really is no win situation as you end up swapping one set of problems for another but it does offer a second chance.

    From a personal perspective I have a 5 year old son to whom we will at some point in time have to explain exactly how ill his mummy is (I have Pulmonary hypertension and scleroderma) which is so heartbreaking just thing about. I also see the same consultant as Katinka at Sheffield who is absolutely fantastic, as are the rest of the specialist team at Royal Hallamshire.

    Cannot imagine how scary it must be for you as a family but keep strong and keep PHighting. Happy to chat anytime you need a listening ear. Love and hugs xx

  • Thank you so much for sharing bagpuss...and for your kind words x

  • Claire my thoughts and prayers are for you and your family at this time 💐🌻🌺 Val

  • uPDATE......We have come to the decision to make him active.... Due to a deterioration over the last few weeks the decision has become a lot easier to make. Thx for all the replies

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