Single Transplant not possible

[mary1956]

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.

[sassy59]

What a huge disappointment for you Mary. Thinking of you and hoping you get better news soon. Love and hugs 🤗💜

[mary1956 in reply to sassy59]

Yep, just getting my head around a single lung and now back to square one. Still suitable for a double, so holding onto that.

[sassy59 in reply to mary1956]

Good idea. Xxx💜

[CDPO16]

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.

[mary1956 in reply to CDPO16]

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.

[Caspiana]

Hello Mary,

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.

[mary1956 in reply to Caspiana]

Yes, I just need to focus’s on a double and await the call.

[skischool]

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.

Best wishes Ski's and Scruff's

😊😻👍 x

[mary1956 in reply to skischool]

At least I now know that if I get the call I will be getting a double lung. Glad the uncertainty has gone.

[johnderby]

So sorry Mary. Hoping you hear something soon about full transplant. John

[mary1956 in reply to johnderby]

Yes, just continue with the hoping. At least I’m suitable for a double.

[BreatheasyBe]

Draw a line under that single lung chapter and spend your thoughts and prayers on a successful double in the future. Xxx

[mary1956 in reply to BreatheasyBe]

Exactly. Now I know exactly where I am.

[Kitten-kat23]

I truly hope you get the transplant you need.

[mary1956 in reply to Kitten-kat23]

Really hoping it will happen. Thank you for your reply

[madonbrew]

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

[Izb1]

I wish you all the best for your double lung transplant Mary x

[mary1956 in reply to Izb1]

Thank you. Really appreciate your reply.

[Biofreak]

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.

[mary1956 in reply to Biofreak]

I know, such a shame that it wasn’t discussed until they had all the results.

[Karenanne61]

What a blow! But let's hope a double is possible soon.

[mary1956 in reply to Karenanne61]

I know that a lot of people wait much longer than this, so I trying to stay realistic.

[Karenanne61 in reply to mary1956]

Sometimes it's hard to be brave though. I'm undergoing tests at the moment prior to being referred for a lung transplant.

[mary1956 in reply to Karenanne61]

Good Luck with all of those.

[simplesprout]

Wishing the best outcome for you, good luck x

[mary1956 in reply to simplesprout]

Thank you.

[Cloudancer]

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

[mary1956 in reply to Cloudancer]

I’m trying to hang onto the positives. All the messages help me so much, so thank you

[jackdup]

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.

[mary1956 in reply to jackdup]

I guess they were trying to give me some hope. At least I know

[Alberta56]

So sorry you've been disappointed. Hope a pair comes along soon. xxx

[mary1956 in reply to Alberta56]

Here’s hoping. Thanks for your reply

[peege]

I'm very sorry that you weren't deemed suitable for the single transplant mary1956. Very glad that you're still on the list for a double though.👏👏👏🙏

[mary1956 in reply to peege]

Thank you. Maybe in the end it will all be for the best

[peege in reply to mary1956]

Will keep everything crossed for you 🙏

[HollyBoyd]

Such a disappointment , Mary, but wish you all the best for a double transplant soon. xxx😊

[Kristicats]

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🤞🤞

[Kate124]

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.

[mary1956 in reply to Kate124]

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.

[Kate124 in reply to mary1956]

Thank you.