Uplifting stories on single lung transplants needed please!

[Petto]

Since the beginning of July 2016, I've been on 'The Active Transplant List for a single lung transplant' at Harefield Hospital I've been told, by one of my Transplant Co-ordinator Nurses that it's more difficult to get a single lung donor. I so wish I'd never learnt this! However, my surgeon said, "Within my experience, you should get your transplant within a year." I think, with a fair wind, good luck and only a few infections, I have about 2 years left. It's sort of Catch 22...........of course you have to keep 'fit' to stay on the list because the operation takes a lot of strength to survive and recuperate.

When I'm down because my life is so limited I hear '..... it's more difficult to get a single lung donor.' My darling husband, who is my carer and would do anything for me has Parkinsons Disease so it's very hard for him and like everyone who has someone care for them, I feel so guilty making him work so hard.....as if his burden isn't bad enough, he's got a hernia!!!! He's having an operation next Wednesday and then we're staying with friends for a few days to get over my husbands operation My life is very limited .............. I'm so sorry to whinge

We have agency help in for 2 hours a week and a dear friend helps too another dear friend used to help us but she's now got heart problems, poor thing, so of course, she must look after herself bless her

Can anyone tell me any uplifting stories about getting a single lung transplant please? That would be such good medicine

I have had a very good innings tho' I had a lung removed because of Lung Cancer in 2000 even though it was a late diagnosis (Due to a filing error!!!!) But it's natural to want more isn't it? If I can get a transplant, I can look after my dear husband who is such a treasure We've been married for 36 years and we're still nuts about each other!

Thank you everybody This is the first time I've posted anything - I've replied, but never started any discussion Thanks and best wishes Petto X

[Katinka46]

No stories I'm afraid but you both sound like such lovely people. Yours is a good story even without the lung.

Keep going.

Love to you both

Kate xx

[Petto in reply to Katinka46]

Thank you Katinka46 for your kind reply I appreciate it very much

Love to you too!

Petto X X X

[mrsmummy]

We do have a member who has had a transplant. I can't remember his username but maybe someone else will. Good luck.

[Petto in reply to mrsmummy]

Thank you mrsmummy for taking the time to reply

Very best wishes

Petto

[clematis5932]

Petto Sorry I can not help you. I would like to wish you and your husband good luck. You sure do deserve it. You are a very brave lady.

[Petto]

Thank you

clematis5932 for kind reply I don't feel very brave but it's lovely to read that you think I am!

Very best wishes

Petto

[sassy59]

Just want to say good luck to you Petto and sending positivity and good wishes your way. Your lung transplant could happen at any time so stay strong. Xxxxxx

[PastMeBest]

Hi Petto I see that you have been on the forum for only a short while so "Welcome" and I hope you find what you need and make some new friends along the way.

Wow! What a predicament you seem to be in. Your thoughts must be all over the place. Not only have you got yourself to think about but you also have the added worry about your husband. I do understand some of what you must feel like. My wife has COPD and I have been her carer for over 12yrs then I get diagnosed with Pulmonary Fibrosis. We have been married fo 42yrs so my diagnosis came as quite a shock to both of us. Anyway we both help each other and we seem to muddle through whatever life throws at us.

Long before I became ill I once asked my wife if she were offered a lung transplant if she would take it and without hesitation she answered "Yes". This surprised me until she explained what it was like trying to get your breath when you think you are taking your last one and trying to stop the panic at the same time. I've since learned first hand what she meant.

From time to time we do get people coming on that have had a lung transplant telling us their story and I'm quite sure that someone who had had a single lung transplant was on only a short while ago telling us how well they were doing. All positive things that would encourage you. Hopefully someone who has had a transplant will come on and give you the information you require.

Only a small percentage of people are offered a lung transplant and it is a big decision to make especially when you have a loved one to take into consideration. From the way you talk about him he is a great support to you and I am sure you will work things out together for the best. Don't ever feel guilty or think that you have been any sort of burden on your husband because he is your carer. I'm sure that you haven't been. I can tell you that in all the time I've looked after my wife I have never considered her a burden or looking after her a chore. When you love someone, you don't. You would do anything for them.

Don't look on your post as whinging. All you are doing is just letting your feelings out. That isn't a bad thing. It will stop you dwelling on things that worry you and making you feel depressed. A positive attitude is what you need and that will help you in so many ways.

I don't know if I have been of any help but I just wanted to try and lift your spirits a bit as you seemed a bit down.

I wish your husband all the best for next Wednesday and hope he has a speedy recovery.

I also wish you every success when you have your transplant.

Take care,

John.

[Petto in reply to PastMeBest]

Thank you John It's so kind of you to take such trouble with such a detailed reply

and very helpful and I'm feeling better now

Thank you very much from my husband too!

Petto

[SquirrelsHolt]

Dear Petto, to be honest I have no knowledge of what to expect from having a lung transplant but @PastMeBest has given you an excellent reply. I'm sure a member will surface who can give you first hand knowledge. Please keep us posted with your yourney and I only pray you are not waiting too much longer. Take care.

[Petto in reply to SquirrelsHolt]

Thank you SquirrelsHolt, you're very kind I will keep you posted Thank you Petto

[Six1]

@petto X first of all I like to wish u luck Me myself waiting to get accepted for a evaluation for a tresplant I have copd sarcadois an emphysema diagnosis back in 2014 just found out 4. days ago that my left lung is in stage4 but working can u give me any advice on which way I'm headed I am so new to this surely will appreciate it

[Hidden]

G'day Petto

Welcome to the "Family"

Either bilateral or single lung Tx is quite common.

One of our support group had the upper lobe of her left lung removed (C.O.P.D) and later she received a new right lung. In her case a transplant was scheduled for another sufferer but when the lungs were examined the left was compromised, meaning that the recipient's transplant was cancelled as he needed double lung, The hospital contacted our friend and 1 hour later she was in theatre .

It has been 3 years since the surgery and she is doing really well.

In the USA single Tx happens regularly.

You can survive on one lung.

Have you been offered a double lung?? Or do you only need 1 replacement due to the previous cancer?

My wife is now 8 weeks post transplant, Bilateral due to IPF.

We have been amazed with the new procedures for the surgery, times cut from 7 to 4 hours for a double lung, and no cracking of the sternum and 2 smaller incisions under the breasts. My wife was up walking (Well staggering) around in 48 hours and home in 17 days.

You are so right about fitness. No matter what else is suggested you must keep exercising, even on those days when it it is a real effort. I have saeen first hand the difference in recovery between those who "slugged it out" and those who took a more laid back attitude.

I wish you well on your journey

May GOD Bless us all

Will (Australia)

[Damon1864 Volunteer]

I would love to know how I would go about getting on the transplant list. Can anyone give me any useful information pleasexxx😊

[mrsmummy in reply to Damon1864]

You need to be referred for assessment by your consultant. He will only do this if your condition is quite serious.

[Sherry44]

Hope it happens for you soon Petto. My very best wishes and love.

Ann

[Tee1008]

I cannot add anything useful to your replies, but just wanted to wish you the very best of luck and hope that call comes soon for you.

Tee xx

[twopars12]

Petta hope it turns out well for you. I'm sure you will be fine.

[sibkev]

i had double loung tplant in march this year if you need to know anything just ask ill tell you all the in and outs