Hi I have just joined so this is all really new too me I have lung disease and have just gone on the transplant list

[8uck]

Has anyone been though a transplant

[Hidden]

Hi & welcome 8uck,I have not had a transplant,& not sure if someone here has,I'm sure they'll pop in for you if that's the case.A few others are waiting on the list,& I'm sure you'll hear from them.Good luck with it all,Wendells xx

[8uck in reply to Hidden]

Thank you so much

[cofdrop-UK]

A very warm welcome to you. cx

[8uck in reply to cofdrop-UK]

Thank you very much

[longlungs]

Hi 8uck just saying hello and welcome to our friendly helpful forum,we have a wealth of information between us all,and there is aloways the option of calling the BLF direct with any problem that you might like a more professional answer to.Im sorry I cant help with any info re lung transplant but I do know there are several here that are also going through the process and hopefully they will pass by soon and be able to help you.Nice meeting you hopefully we will get to know you more now . keep well and breathe easy Janexx

[8uck in reply to longlungs]

Thank you

[8uck]

Thank you everyone it's really nice to talk

[Puffthemagicdragon]

Hi and welcome 8uck. I haven't had a transplant but I hope someone will be able to help.

[sue48]

Hi there ! Like everyone else i,d like to welcome you to our group ..everyone is friendly ,helpfull and ready to listen . .i havent had or been offered a transplant but there are a few on here who have and i,m sure they will com on with words of encouragement. . Good luck ..and feel free to ask away and have a moan when needed ...someone is allways here. X sue x

[Hidden]

Hi nice to meet you and welcome to the site. I haven't had a lung transplant either just wanted to say hi. x

[8uck in reply to Hidden]

Thank you and hi

[RNEMTCHIC]

hi my mum has had a lung transplant and I have been her caregiver from before surgery and after. I am very familiar with the process. Her and I would love to chat with you and answer any and every question please send me an email [e-mail]

[8uck in reply to RNEMTCHIC]

Thank you very much for that I will email you x

[8uck in reply to 8uck]

I would really like to talk to your mum and my partners who is my carer would love to talk to you too xxx

[8uck in reply to 8uck]

Partner lol

[Sohara in reply to RNEMTCHIC]

Hi RNEMTCHIC How is your Mum doing?

[out-for-lunch]

I'm approved & on the list up at Queen Elizabeth, but I've postponed being on the 'active' list for as long as I can. I still have quality of life, albeit everything's a lot slower ..... but will it change if I had the transplant? I've spoken at length & very openly to a few who've had it done & they raised the following thoughts ..... I may not come out the op. & even if it is successful although some are much longer, the average post tx survival seems to be circa 5-years. After the tx you have to take loads of anti-rejection pills & have to be super cautious about infections/what you eat etc. Looking after your new lungs will completely control your life, for every minute of every day, for the rest of your life ..... every twinge or pain may be serious etc. Fine, I accept that, but now I know that, I may as well squeeze as much mileage from my own knackered lungs as I can ..... at least I know them, I understand the twinges & pains .... & I know it's not a huge alien organ that my own body is doing it's level best 24/7 to reject.

So I took the view I'll wait with my own lungs for as long as I can, then I'll push for the tx

Meanwhile, there are loads of leading-edge developments coming along ...... gene therapy, designer meds, steam & coil etc ....... non of which would be possible after transplant. Basically all plan 'b's are cancelled once you've had a transplant ....... & a transplant isn't always the silver bullet ....... I suggest you research the op & post op statistics.

Just my view ....... but something to consider ...........

Good luck .......

[8uck in reply to out-for-lunch]

Hi n thanks for all that it really is a lot for me to digest , I don't understand some of the message what does or is tx short for ,

[MarieW-F in reply to out-for-lunch]

My view completely. I follow a lung transplantee on twitter. Whilst she has an amazingly active life (she works, has her own home etc), she has recently just gone through a rejection scare. it was terrifying. its this that worries me, those twinges, the fear...

[out-for-lunch in reply to MarieW-F]

I was fortunate insofar as my consultant introduced me to about 7 of her patients who'd had it done & I spent half a day or so visiting & chatting to each of them - & their carers. I got a really good 'no-holds-barred' insight into life post-transplant.

I think it's worth anyone considering transplant to ask your consultant to put you in touch with patients who've had the procedure ...... & yes, like you, to follow the countless blogs on the web from people who've had it done.

[out-for-lunch]

sorry ..... I should have explained.

tx ..... it's the medical abreviation for transplant.

[8uck in reply to out-for-lunch]

Thanks it seems we in the same boat have you Bin told how long your lungs will hold out for? I can't do anything without oxygen I'm on 8 ltr 24/7 and can't do much on that , this is not my thing chatting but I feel better for it all ready for talking

[out-for-lunch in reply to 8uck]

8lpm ..... that's a lot, & a lot more than I take.

No, I haven't been given any idea how long my own lungs will hold out, but fortunately my lung stats have stayed pretty much the same for the past 2-years, probably due to me now making a huge effort to exercise a little but a lot ....... & staying well away from pollution & perfumes & sprays & stuff.

I'm on 4 lpm as needed ...... I'm what is known as a retainer, so too much oxygen would kill me.

I have a disability scooter ...... getting that opened up my entire world. I also have an electric bike ..... no pedaling required, just twist & go ...... & in the summer I love it - it's far easier than trying to walk anywhere.