2 weeks ago I’m told that there are limited lungs, and as I’ve only had 1 dry run in 18 months, that illustrates how difficult it it. Consultant thought I would have a better chance of a transplant by accepting a single lung.
Today I received a copy of the letter that went to my GP and read that I’m not suitable for a single transplant because of pulmonary hypertension.
I was scheduled for a zoom consultation but the Consultant was too busy to call. ( I found this out when I rang them 90 minutes after waiting in the virtual clinic waiting room).
So back to square one. I wish single lung had never been mentioned until suitability was known.
Thankfully I’m still suitable for a double.
Written by
mary1956
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Sorry for your disappointment Mary. Years ago my then consultant talked about steam ablation as a potential treatment for my emphysema. I had a wait of almost a year before my next appointment where I was told that I wasn't a suitable candidate. I too wondered why the treatment had been mentioned in the first place.You are, as you say, still a candidate for a double lung transplant and I hope that your wait won't be long. Best wishes.
What a disappointment that must have been for you. I think the medics are trying to give you all options, but they don’t understand the implications of some comments.
I'm so glad the possibility of a double is there. It is true that the U.K. has a small organ pool very much is here. I really hope your call comes soon in the mean time keep moving. You cannot afford to stop. I hope you can speak to your consultant soon. It's awful when things change quickly , so disconcerting. Take good care. 😀
P.S. Japan has always done singles when possible. For diseases like Cystic fibrosis it is impossible to have a single. I think the U.K. has too few organs and is now giving singles if the patient is a candidate. It means two people can get a chance at the same time. Shortage of donors is a very big problem now. And I agree they should have checked before telling you this.
I think single lung transplants are quite rare in the UK Mary and the policy always seems to be to do a full transplant so i was quite surprised when your consultant mentioned that option?But i am pleased to hear your are still ontrack for a full transplant and cross fingers that you will get that call soon.
Oh no, that sounds difficult. Sometimes they don’t realise the impact of their words do they! Keep holding onto the hope of your double transplant instead! xxx
Rooting for you Mary. Forget about the single and hope for the double. I do wish some consultants would think before talking about things they haven't yet investigated.
Am thinking of you and sending virtual hugs.What a disappointment for you-I do hope that what is the best option happens and within a reasonable time frame x
That is really unfortunate and agree they should have never suggested it until they knew it would be appropriate for you. I hope and pray a pair of lungs will be available soon.
Another case of Consultants not reading case files properly before putting mouth in gear. May take an extra 3 minutes but stops a lot of mistakes and upset.🤷♀️Hope you don’t have to wait too long for a transplant🤞🤞
I was referred for double lung and heart transplant. I have pulmonary hypertension as well. I've been turned down as surgeon wouldn't consider triple. Said my heart was too bad for lung transplant. Only diagnosed with PH in May. Gp surgery kept saying there was nothing wrong with lungs although I'd been going there for 10 years saying I was struggling to breath. I think gps need some education on this life limiting disease. I've been given 6 to 12 months as been left too long. Hope you get your transplant soon as there should be plenty of lungs as we have an opt out system now. Thats if you are in uk.
Hi, yes I am in the UK. How awful for you that you are unable to be transplanted. I had hoped the opt out system might improve the number of transplants. Covid has caused a big decline, but relatives can still decline and organs cannot be used. Wishing you all the best. I am so thankful to still be listed.
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