Just fine, my lungs are just nackered. He said "time to send you for a transplant, what do you think.?. It was upsettin and shocking to hear. Well after discussion we agreed to leave it for 6 months but he said if before that you cant cope to let him know. Such a scary situation. Im only 50 with a hubby an 2 kids at home, I cant do much at all but think its not worth risking at the min. What do you guys think?
Went to see consultant y, day, he sai... - British Lung Foun...
Mcnally - this is a hard one to advise. I am not sure am qualified to talk at all. You are young with many active years ahead should you decide to have the op. So many factors should be considered. Do you have relatives and friends who could give help when needed. I would discuss with all involved and see how they feel. They know you better than me, but at the same time, it is good you have come to the forum. and get a feedback from those that might have had the same situation. All the very best from Pergola xx
I think this is something you can only evaluate yourself. Gathering others thoughts and opinions may assist you, but it's entirely down to you. If it was me, I'd be considering quality of life, over quantity, but that's me. My family is grown up and off to their own devices, so I can, in some ways, be extremely selfish. I wish you well, no matter what you decide. x
What a tricky one Mcnally......I know so many people who have had other organs transplants and they have saved their lives, but not a lung transplant...I had thought you had to have a double transplant heart & lungs ( but thats only me thinking that) I think I personally would carry on as long as you can like you are ( are you on oxygen?) but I would not let myself get too old before I went on the list, I don't know if its a 'points system' but being only 50 with 2 kids at home must be a big plus for you...as you get older 'say past 60' then you may lose some priority
Did you consultant discuss the newish lung reduction valves? perhaps they might help you...there is a link on here somewhere about it.
Hopefully someone will reply to you that has had a transplant , that may help you
But my feeling is wait....but perhaps not too long
I hope whatever you decide turns out to be the best decision for you
That is very shocking news to hear! How awful for you and your family. I am afraid I am not qualified to help you but would recommend you ring the BLF helpline and ask their advise. Good Luck TAD xxx
Mcnally, I think you would be a bigger nuisance if you worried on your own.Your family wouldn't want that at all. It seems the best thing to listen to the consultant. Talk to husband, and accept any help that is offered. Your family love you and want the best. I dont know how old your children are but they must be pushing teens.
Digressing a little - I am having to accept lots of help when we move to be near daughter. I know my daughter. She might want me out of the way (SMILEY) love P x
Hi sohara, yes you can get just a lung transplant, and no I dont need oxygen, I mamage to get it in but have trouble gettin it out, think its called hyperinflation. Yes kids in there teens and educationsly at very crucial times, so hard to tell them everythin really, I cant have the vslves because they said im not emphysemic enough. Xx
Hi mcnally, Nice to talk to you and dont think for a minute you are being a nuisance you are Ill and you are going to need a lot of help and support from them, Like yourself when a transplant was first mentioned it was a shock but at the same time i was so ill it looked a good option for me at that time, Then they put it on hold for 6 months at least then I explained that i was 62 over the age for this op but they reassured me if i got ill further down the line and I was strong enough for it they would have no hesitation in going ahead with the Op, I have RA ( Rheumatoid Arthritis ) at the same time and has given me such a hard time as could not get meds because off my Lungs, Then i started exersising just a bit more than the day before and 6 months later I was back at work even now it's not easy the RA makes sure of that but my Lungs have not got any worse and they say this is because of my Exersising. Good Luck. Mattcass
Hi Mcnally, what shocking news for you.
I'm not qualified to advise medically or emotionally so I think a call to BLF on this occasion would be highly beneficial to you. Bite the bullett and give them a call (it would be good for them too an oportunity to share their expertise on a biggy).
I do remember last year, seeing & hearing of a youngish woman (it was possibly something to do with highlighting the the Donor situation). She said her goodbyes before her lung transplant because she was seriously and didn't expect to survive. She is now living life to the full and is very happy. I only wish I could remember her name to pass on to you.
Personally, I would be very tempted (but it would be impossible to put oneself in your shoes). At 50, there is so much joy to come. xxxxx
It is a very hard thing to decide, you need as much information from the professionals as possible. I have also been told that you're deemed too old from the age of 60.
I have been advised to get all of the assessments done and then based on those and the discussions with the consultants make an informed decision. I wish you all the best. Take care, Richard
Hello Mcnally Oh my that must have sent your grey cells into a spin and overdrive,I too would be in shock and upset to say the least.I think you need to take a little while to absorb this startling news.You have a little time to chew the fat so to speak with family,friends and medics.The will to survive is great in all of us and right at this moment you brain must be screaming 'idont wanna die! yes do it i'll have it!,i must be bad for them to suggest this! 20% failure not very good that could be me oh hell what to do?' Very normal Mcnally Iam sure in time you will make the decision that is best for you and family.Everyone here is behind you every step of the way whatever. Janexx
Hi McNally, here is a link for you
A friend of mine was offered a transplant but eventually declined. On average, only 5 out of 10 survive 5 years after a lung transplant, he has already survived 7 years without. Ok, he may have survived longer with one and his quality of life may have been better but it's a bit of a lottery. You need to find out everything you can about the operation, the recovery period is lengthy and very hard work, your immune system is suppressed for the rest of your life and you therefore have little resistance to infections.
Is there not another route you can go down, LVRS or endobronchial valves, for instance? Your comment to longlungs above is very positive and that's just the attitude that will stand you in good stead and I wish you a long and happy future whichever route you take. Andy
Hi mcnally, what a decision you have to make, I would seriously get the ball rolling as others have said, it will take time and you will be able to make the final call, but learn a lot more on the journey. If you don't mind me asking, because our illnesses baffle me, how can you be so ill but not have much emphysema? I have been diagnosed for a year and still trying to grasp everything.
hiya McNally my husband just been placed on active list for a transplant its took a year and 3 month to get to this stage x like the others say only you can make the dis to have it x theres load of test first . theres a 4 day stay in hospital then a over night stay and then depending of there finding they tell you if they can offer you transplant then its up to you if you want it or not . you have to be physically and mentally prepared . but if I was you I would get the ball rolling . you have nothing to lose and every thing to gain . stay strong x x
Some great advice but at the end of the day only you can decide. Personally I would jump at the chance even if it did only give me five years, five years being able to breathe would be wonderful and I wouldn't waste a second, unfortunately I have osteoporosis so wouldn't be suitable.
Hi McNally,my heart goes out to you,decisions,decisions....
You probably need a bit of time to take it all in.
Do involve your family in it though,I'm sure you are well loved,& they wouldent want you to suffer on your own,& it might be helpful for you,to get there thoughts on it.
Do give yourself a bit of space,& don't make any hasty decisions.Hugs& love Wendells xxx
I am waiting for a Pace and Ablate which will mean I will be pacemaker dependant. So if that fails I fail But they are waiting to hear what my Lung consultants says is wrong with me and prognosis before they will do the op. I have RA in my knees and that was diagnosed in the 1980's but they turned around and said that would rather do a knee transplant when I cannot walk rather than do it early and then do a number of replacements over time? I am 58 and I do think it becomes a factor on their willingness to do some op's.
You have a great dilemma but see if you can find others that have gone though this experience and on this site I am sure someone can give you a personal example.
You really do have a lot of thinking to do, like Pergola says a big challenge, such a flustrating illness, hoping you can come to the right decision for you and your family, Talking with someone in that situation, who has had one would help, then you can write down the fors and against, roll on the spring,take care, Heather.xx