Went to see consultant y, day, he said there was nothing else he could do for me. I am getting all the right meds and my oxygen levels are

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?

49 Replies

  • 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

  • Thanks pergola thanks for answering, yes I have a good family, I just hate being a nuisance! I did ask for the pros and cons, the consultant said, because of the actual risks the op involves then if I could muddle on the way I am for as long as I can then that would be best. 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

  • The consultant told me he couldn't do anything for me, I'm at stage four c.o.p.d. and aged 67, then I asked him about a lung transplant, and he said that I wouldn't stand the operation, so your consultant must think that you would stand the operation !

  • 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

    Love Sohara

  • 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

  • Thanks tadaw xx

  • 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

  • Yes will do, and regarding your daughter im sure it will be great being closer to her, my eldest lives in leeds and I miss her so much xxx

  • Thanks initial I know what you mean, ill have to get my thinking csp on! Xx

  • Hi rick1, im also stage 4, but my consultant reckons that if mentally and healthily I can cope then I should hang on in there because of the risks xx

  • 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

  • Thanks mattcass, whatever did we all do to be in such a stste haha. I know exercising is a great help but ive been so poorly lately I havnt done a thing but im gunna get started soon. You seem to be doing well, keep up the good work xxxx

  • Big decision time. Lots of pros and some cons. I agree to discussion with your family and medics, talking to others who have had a transplant and doing some research - but the bottom line decision is yours. Good luck, whatever you decide.

  • Thanks toci, I swear to god its this british weather, its a killer, once the spring comes I am so much better. I do go abroad twice a year and that does me the world of good, just waitin to win a few bob so we can spend the winters abroad! Xx

  • Oh, me too! :)

  • ....... and me!

  • Really hope with all the advice here, that things have become a bit clearer for you. On the positive side, I wouldn't describe the situation as awful, just a big challenge. (Smiley)

  • Yes its greatfully appreciated, its hard to stay down when my beautiful family are around, ive got everthin to live for I know that but as you know its real hard sometimes xx

  • 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

  • But for how long peeg, how many years, plus my consultant said there is still a 20% chance I wont survive th op or after! Decisions xx

  • 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

  • Yes thats right RichardAT, 60 seems a long way of but we both know how time flys, im goin to have to have a long think. Stressfull innit! Xx

  • 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

  • Ah thanks jane, im a jayne too haha what drives me mad is I look so well and dont feel as sick as they say I am. I have 28% left in my lungs an im keepin it! Its all in the positivity, im gunna try my best and keep goin as I am for now. Xxxxx

  • Us Janes what can i say :) Absolutely the power of positivity knows no bounds I do believe it to be very influential, successful and healing! Good on you. :) 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 andy thanks for your response and no I cant have the valves, been investigated for tem but apparently I havnt got enough emphysema so it wouldnt work! I really do think I will hang on and see how I am after the summer. Xxx

  • 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

  • Thanks chrissyk, wow, there is so much information which can only be good. I have a lot of thinking to do which is stressing me out tbh haha. I am greatful to you all for being here for me today,my blessings go to your brave hubby and you for putting up with him hehe I know we can be a handful xx

  • Hello McNally

    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.

    Kim xxx

  • Hi kim, I know what your saying, but im greedy and want more than 5 years! Xx

  • 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

  • Hi wendells, this is a hard decision, I dont have a big family just hubby 3 kids and my mum and dad who are in their late 70's. At the moment only my hubby and eldest daughter know the situation im in. I just think I need more time yo think it through. Xx

  • 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.

    Be Well

  • Thanks offcut, were in a right state arnt we, decisions decisions, im greatful to everyone who has responded , thanks xxx

  • i would love to spend my winters abroad yes yes yes marian xx

  • Were just waitin for the kids to leave hahaha

  • Mine have gone but now I cannot work I have no money :(

  • Ah im ok, lucky that my hubby has a good job, plus we still try lotto xx

  • 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

  • Thanks heather, it is frustrating. I cant wait for spring xxx

  • Keep your chin up, all will work out well you see.xx

  • Hi I'm Elaine. I am in the same situation as you. My nurse has just wrote to withingshaw hospital for me to talk about what they can do for me. I am 60. I was in MRI hospital for 2 weeks just after Christmas. I had a chest infection for 6 months and I still think its coming back. I have been looking at stem cells on Internet. Can't find much about it yet but, my nurse said withingshaw hospital will be able to tell me about it. I just thought its not as bad as a lung transplant. If it helps to make your lungs stronger it's worth looking into. Hope this helps. This is the first time I have been on here. You are at the same stage as me. Lots of luck Elaine.

  • Thanks elaine, hard isnt it, hope it goes ok and let me know how you get on xx

  • Hi it's Elaine. I've got an appointment for 7th April at withenshawe hospital. I will see the doctor and discuse what they can do if anything. I think I will go for lung trancplant if they think it would give me a better standerd of life. Just now I am struggling with everything I do. Just putting my washing in the machine and starting it gets me gasping for breath. Hope you are keeping well. Looks like summer is coming. We should all breath a bit easier then. Keep doing your exersizes, it keeps you going. Elaine.

  • That is good news, im exactly the same I just do everythin in slow motion now haha take care and keep me informed xx

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