Post op double lung: Hi I'm a post op... - British Lung Foun...

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Post op double lung


Hi I'm a post op double lung transplant patient. I had my op in March of this year and am still feeling pretty useless. Recovery has been a long process. I'm suffering depression and anxiety. Had kidney problems. Weight loss and sickness. Stopped eating for 6 months. Very tired. Was in hospital most of this year due to infection. Has anyone else experienced this?

19 Replies

I do hope you soon start to feel better

Take care


Deanh in reply to newlands

Many thanks take care

Hi. Deann Hang in there mate it's tough. One havin a TX I just got on waiting list I really pray that. You improve. It's a massive op. And you on a lot of. Auto immune drugs. Dig deep. You have to try to. Drink. OJ or other vit c. Must eat. Losing weigh. You must get. Them cal s. I shuggle to get around. 2200 2500 but my weight is good how long did you wait for op. Where you from. Iam Hackney. London. I go. Harefield I just got out of hospice for respite. Man. They are. Brillant. St. Joes in. Mare st. E9. Acpunture jap massage. Really really. Good food. Volunteers to chat to. Tea cakes when I really did not want to leave. I had. A laugh. There and. Made. Good friends. Well. It's getting late and again. Take care. Make a plan have belief in almighty and yr self. Never give up. Love. &. Peace. Paul.

Deanh in reply to Tricity125

A big thanks Paul it means a lot.

I realy hope every thing goes well for you and it all goes well x

Hello Deanh .

I am sorry to hear you aren't doing so well. I am on the waiting list for a single lung. I am also a member of a lung transplant support group on Facebook. From what I read, it takes up to a year to feel better for many people. And for some recovery takes a lot longer with many setbacks. Our group here do have a few people who are waiting for a transplant or have had a transplant but not a huge number. Are you a member of any transplant specific support groups? Have you discussed how you feel with your transplant team? Are you attending any rehabilitation courses?

I'm sorry for the many questions.

Warm wishes,

Cas xx 🙋🐕🐾

Tricity125 in reply to Caspiana

Hi. Ya. Caspiana. Now. That a. Great. Name. Sounds. Russian or polish ? But most problary. South. European. Med. well does not matter. Main thing is it sound. Exotic so. How you dong. How come you only getting one lung. Is because you so nice that. You only want. To share. So. Somome else may live. Or. Only. Got one bad lung. I was happy just to get one. As. There's been some very good sports men. That. Do well on one. Blower. But they say mine both need. Chop and swap. I think I've said hello to you before but. Half the time my head. Is. Struggling to. Prosss. Any info I try not to over load. But. Of coarse I do. I've only got on. Waiting list about a month now. Iam at. Harefield. I started there a year ago. Before I was at. Brompton. 6 yrs. and. Bart s. 3/4 years. So I was born. North London but my. Gran. Father. Was from. Germany my. Dads Dad. My. Mothers. Mum from Norway. So. Not sure. But I've read. Northern European more common. I have. A1AD. And. Been. ILL now. Over 10 yrs. on oxygen. 6 yrs. can. You. Had me to. Yr. email. As I. Do not know how to do Facebook. Or we could just. Mail. Though this. Well. Caspiana Take care and bless. You. Paul.

Japanese. Wow. I've just. Had. Japanese. Massage. Brillant. Alway. Ridden. Jap. Bike.s. And. Last 2. Car. Just. Fantastic. Present one. Subaru. Wagon. Sadly. Driving. Out the window. As. Getting to and from. My home. Is to much. Any. Way. I look very forward to hearing from. I really want. Learn how to. Do sushi my. Cousins son. Is. Going traveling. After he finnishes. Japanese. Laugage at. College. Bye. BW. Paul .

Caspiana in reply to Tricity125

Hi Paul. 😊

I get one lung because they think I can manage on one. The surgeon said healing is faster. But I'm not sure. We have such a small donor pool here , organs are scarce. They probably have to try and get as many organs around as possible. Did they tell you what they average wait is in the U.K.? Here on average it is two years. My two year mark will be in April.

I am not a good cook. But I do like sushi. You know after transplant, we won't be able to eat sushi? That almost broke my heart. But if I can breathe, I think I can handle it. 😅🍣

I hope you get your call soon.

Warm wishes,

Cas xx .🌱🌿🍃

dude been there done it it gets better trust ne had mine march 2016 ive had blood clots infec i even bled inside and had 8 lots of blood set me back a bit but ill getback to it so dont give up never let it where you down just keep fighting on

Hi Hun, I do know a lot of Pro Trx's friends as I await mine(2 Years and 5 months on List)

I will be going to QE Birmingham, I am a member of their Forum, which gives loads of info pro trx. A friend Yesterday, had here Double Trx ( second call in a week) she is doing very well, We are all different, My very Good Friend is one year on now and has got through all the Low's and come through Stronger, she is back at work. Try and Join your Hospital Web Page for Transplant, it will be very helpful, But Please keep us all here updated on your Progress. Warm Wishes to you & your family. Carolina XXX

Deanh in reply to Hacienda

Many thanks for your reply. I hope your transplant comes soon and you go from strength to strength x

Hacienda in reply to Deanh

Thank you so much for your kind words. Love n Hugs xxxx

Hope you start to feel the benefits really soon.

Deanh in reply to Ergendl

Many thanks


Hi I had a single lung transplant 2 years ago. Lots of set backs. Got an infection in other lung three months after transplant and had to have that removed. Ended up in a coma for five weeks on life support on ecmo in intensive care for three months after a bleed on transplanted lung 4 cardiac arrests tracheostomy needed. I still have my bad days and good days. Have a lot of stomach issues I have developed gastropherisis due to severed nerves so I'm on nutritional shakes eating is a huge problem for people who have had transplants! I do hope things improve for you. Like I said Ita been two years for me and I still struggle

Deanh in reply to Hidden

Many thanks. I do appreciate the gift I've been given. Had a lot of problems was in icu for 3 months home for a couple of weeks then back in hospital for another 2 months Have had to have brain scans due to infection. Still struggling to walk and eat. The good thing is not on oxegen 24/7. Will get there

Hi there, I had a double TX in May, after which i was kept in hospital for 5 months, due to all the infections and other medical problems the transplant created. Yes its hard, its a wait until you get your energy back..I am still waiting...but I am so grateful not to be sitting with an oxygen tube up my nose in a wheelchair, not being able to do much. So ok its taking longer to recover, but you will I am sure and attitude will make a huge difference. Believe in yourself and help your body to heal drink, eat, exercise. Start to do things you can enjoy for now, the rest will come .

I know its my fighting attitude and determination thats key to recovery, so please start to think different, you are doing ok, for some of us it takes and me! But we are living and breathing. Hope I am not being too hard on you, but its real what I am saying. Good Luck and come on you..believe you are going to get better.

All you can do is say to yourself I will do my very best and I will survive

Hi Deanh

Wishing you a speedy and full recovery in the not too distant future I hope Cx

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