has anyone on here actually had a double lung transplant.....i had an assessment at harefield and they said i would be offered one...
i have to go back in january for a couple of days assessment but i was wondering if anyone has actually been through this because im scared to death
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I would jump at the chance if offered, not likely here in Spain, even if it only gave me a couple of good years of breathing.
it was in january my consultant first mentioned a transplant and its taken me until now to even think about it and this site has helped so much.
i use to day dream about living somewhere warm till last summer when it got hot here and i felt like all the air had been taken away ...how do you cope in spain with the heat were you born there
thanks hun x
Hi Mandy, Its a difficult time getting used to the idea that your ill enough to be offered a lung transplant, I know it took me a little time to get used to it and for a while I couldn't even say the word transplant without becoming a little tearful.
A very good nurse gave me a tip and said keep saying transplant 3 or 4 times a day so I did and this did the trick.
After a little time to get my head around the whole thing I became more and more positive and realised that being on the transplant list is much better than not and it is the only realistic chance of getting your old fitter life back.
Positive thinking is whats needed in our situation and with a little more time I'm sure you will agree with me.
There are people on here who have had transplants so I hope one of them reads your post and gives you a positive reply.
Just think one day in the future after our transplants we could be the ones who are helping others who are in our position now, wouldn't that be something. 
Tony xx
yeah it certainly would be something and you have been exactly the same as me it took me about 3 months to even look it up in the web ive had my head well and truly buried in the sand but the other night i was thinking about my kids ...the youngest is 21 and oldest 30 and when they were small if they had needed something like this i wouldnt think twice about consenting and thats changed my thinking a little
i had no intention of having a transplant from the day i got told i may need one but im coming round slowly ....my fears about it change from one thing to another but im just going with the flow..
this site has helped me so much its the best thing i did getting on here
are you on the list now x
Likewise Mandy, going with the flow is the way to go eh'. My lung consultant, doctor, transplant consultant, respiratory nurses, are all telling me that transplant is my best option as I have no lung capacity left in reserve, if another serious infection comes my way and it would probably finish me.
With that in mind its an easy decision as there is no really safe option is there.
Your right about healthunlocked and the amazing people on it, I found it through the British Lung Foundation site 2 years ago and could have done with knowing about it when I first left Hospital 4 years ago.
The transplant consultant told me he was happy to put me back on the list after seeing that the wound from a small operation had completely healed up so I'm as good as back on but they normally phone and tell you after a weekly meeting that your activated and live on the list.
Tony x
yeah i was told the same thing that a bad infection could be fatal my lungs are working at 27% which isnt that far off yours......its a scary time....but i think you have a fab outlook and i hope they get you back on there soon x
My lung function tests hover between 25% and 33% so were pretty much the same. Not much fun is it but lucky for us it is enough to get around even if it is at a pretty slow pace.
Stay positive Mandy and get yourself on that list next January xx
My lung function tests hover between 25% and 33% so were pretty much the same. Not much fun is it but lucky for us it is enough to get around even if it is at a pretty slow pace.
Stay positive Mandy and get yourself on that list next January xx
The word transplant was spoken to me yesterday for the first time. After telling me I wouldn't be suitable for coils or lung volume reduction, my cons casually mentioned that he was on the transplant selection board and that when the time came, we should be considering it as an option. I was kind of gobsmacked but that would be a few years down the road for me, so I've put it out of my mind for now. In your case Mandy, I don't know what is your best option. Of course you want to be well informed but I'd hate to see you getting scared by reading loads of stuff on the internet that might be inaccurate or extreme. Do you think ringing the BLF helpline and asking their advice is a good idea ?
i was watching you on youtube doing your 6 minute treadmill walk to music
i have to say you have an amazing attitude i wish i had a fraction of what you have x
What a mover eh' Mandy, . Its amazing the things you do when your bored so I had a bit of fun making a video to show everyone that the 6 minute walk can be made fun.
Exercise has helped me a lot so if I can get others to do the same and help them then I have done some good. There's quite a few of us with treadmills now and we are all dusting them off now ready for winter training indoors and maybe some more video's
Tony x
well you inspired me i have my brother in law on the lookout for a treadmill for sale cos they are a lot new x
There great to have when the weather is too cold for our rickety lungs, you can still get your exercise to a bit of music in the comfort of your own home or garage in my case. Good luck and I hope you get a bargain. x
i was admitted into hospital on 27th of december after the worse xmas ever...i had been told by my gp i had copd but they never had a proper talk to me...it was 2 weeks later my consultant said she wanted me assessing for a transplant...i couldnt believe it and took me months to get use to it...
its only about a month ago i started looking online and my copd nurse said to stick with blf to get my information because of scare stories like you say...it was then that i found this forum and i can honestly say its helped me so so much.
i had no intention of having it done but now i dont feel like that...im not even sure why i need to speak to someone who has had it done maybe its the wrong thing but what i do know is i would be lost without my hu family now x
What a lovely post Mandy,so glad you found us.People like Tony, are so uplifting, with there amazing spirit,& courage,you are in good company!
I am so glad you are coming to terms with the transplant issue,though i quite
understand it would take time to come to terms with it.
take care, hugs wendells xxx
Hi Mandy ,
I suffer with severe lung disease and have been seen at Harefield . I'm now going for my 2nd assessment in a couple of weeks to have a transplant . I still can't get my head round it as everything has happened so quickly , however reading stories on here I think it's better to be on the list than not and initially we will feel worse in order to feel better .
It is a truly scary time , and it's the waiting that I think is going to be awful , i am quite lucky that I sleep really well and generally feel well ( part from the breathlessness )
I hope it all goes well for , will keep you posted on how I get on on my 2 nd assessment x
what were your antibody percentage
hi kelly
it was harefield that i went to as well......i was told by the coordinator when we got there that i will not be told if i will be offered a transplant so i was shocked when she said yes they would and everything after that went over my head.
are you looking at a double transplant too x
Hi Mandy ,
I'm not sure what my antibodies are . I was also told by the coordinator that I would not know on my first assessment however Dr Carby said he was quite keen and wanted me to come for a 2nd assessment ( I have that on Monday )
It was a whirlwind of infomation , and mixed emotions , one minute I'm positive then angry , then sad , then back to being positive .
It definitely helps having a forum like this . Will let you know the outcome on Wednesday . Take care. Kelly xx
oh you should have been told what your antibodie percentage was or perhaps they only tell you if they are high like mine but good luck for monday x
Hi Mandy
, hope you are well . I've had my 2nd assessment at Harefield and all went well , I was dreading it thinking there was going to be a lot of tears but the staff were great and it was very informative . My antibodies were fine , I'm now just waiting for the decision which should be on Thursday ( although I'm at the Brompton then ).
When is you 2nd assessment ? Take care xx
i was told that some antibodies are strong and some are week so as mine is 78% the were going to look at the week ones to see if they could ignore them and lower my percentage.....
on thursday there was a meeting held at harefield with all the transplant surgeons and tissue specialists etc to look inot it and i was told i would be called that afternoon with a decision ....as you can probably tell by my message they didnt call me so at 4.50 i called the coordinators to be told that meeting had been canceled......
im upset over the coordinators not calling me thats what they are suppose to be there for but when i rang she told me on monday there is a meeting with the doctors to discuss new patients and i MAY have an answer then which is a bit baffling to me as i assume they would have to set up another meeting with the initial group from thursday
im not holding my breath to be called and i will call them if i dont hear from anyone but im in limbo and a bit cheesed off to say the least........
what did they do on the second assessment x
Hi Mandy ,
I had an angiogram , CT scan , blood gases and tests , urine , lung function , ECG that was left on for 24 hours , reflexes . I also spoke to the coordinator ( Nikki ) for over 2 hours , Mandy was also fantastic and made sure I had all the tests and kept me up dated .
Iwas also told they have a meeting on Thursday to make a desicion but on Thursday got a call to say the meeting had been abandoned and they will call me this Thursday
Sounds like we are at similar stages . I was very nervous about tests but the staff were fantastic
Keep in touch Kelly x
Hi Mandy, I had a lung transplant in January this year, it has been a long haul but I now feel great. I go out, manage most of my cleaning, ironing etc. things I could not do before as I was so weak. It is a gamble but so is life but it is the best thing I could have done. A word of advise is to keep yourself as fit as possible while you are on the list. If you want to ask me anything at all please do. Sue xx
sue what percentage were your antibodies
oh hi
yeah im trying to sort out some time at the gym but i need to go to certain classes i just cant walk into an ordinary class
its still early days ffor you really isnt it
i would love to know everything if you dont mind
what was wrong with you....how long you been ill...how old are you....did you have 1 or 2 replaced....how did you copd with surgery...how are you coping with someone elses lungs etc
sorry if im asking to much obviously just tell me what your comfortable for me to know
x
Hi Mandy, not sure about antibodies but my lung function was 21%, I could do very little and needed oxygen regularly. I was on the waiting list at Wythenshawe for 18 months and had one false call after 8 months. You do get used to the waiting although some people get through after a few weeks,luck of the draw I guess.
I was diagnosed with copd 10 years ago, gave up smoking straight away unfortunately I gradually got worse and it was getting to the stage where I was going to be too weak for the operation.
I am 63 and beginning to enjoy life. My lungs were great from the beginning but because I was so weak I took longer to recover It was a double lung transplant. I had many doubts like you and probably many others but I am now so pleased with myself and take each day at a time enjoying as much as I can.
If I have not answered all your questions please do not hesitate to message me any time at all. I will be glad to answer. Good luck Sue
ps where did you have it done....im with harefeild
I had a double lung transplant at Harefield fifteen years ago.
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