Lung Transplant Question

Does anyone Know of anyone that has had a Transplant operation in Recovery and that is willing to share with me their experiences as i'm in the process of making a decision on whether to go ahead with mine or not atm.

I've asked around but i need an Addict with experiences now.

I've got two knackered lungs and am unsure as too get on the waiting list again, my Consultant has given me 4-5 years with or without the op but this is just a ball park figure they won't put their name to it....

my Physio has said 15-20 years with my old lungs with some exercising.....but won't stand by it either, i just want to live longer now i've got my head around not jumping outta planes now n rollercoasters being in my life, i just want to see my Son have children and see their faces.

if you know of anyone who has had an op and is now on anti-rejection drugs and in Recovery pls get in touch thanks

31 Replies

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  • Hi, I haven't had a lung transplant but I have had a kidney transplant. I was on dialysis and the prognosis was not good and I had two young children, so I went on the transplant list. I had only been dialysing 18 months when I was lucky enough to get my transplant. It will be 11 yrs ago on the 7th February....... Recovery wasn't as bad as I thought but that's because I am a very determined person and not one to let things stop me and slow me down. I'm on anti rejection drugs and if you follow the guidelines the hospital give you, you can lead a normal and full life and get back on those roller coasters lol..... The only downside for me was I work in a school and kept picking up all the little kids colds and bugs, this led to lots of chest infections and eventually Bronchiectasis...... Make the right decision for yourself based on your consultants honest opinion as they know best what your body can go through.... Keep well and I hope this helps a little xx p.s posted this on both questions so you'd see it x

  • Thanks Claire for ur reply, nice to hear ur successful years gained by the Op.

    Yes bugs and infections will always be a problem but to hear u r back at work is great too, i can't wait to one day be back there.

  • Hiya well dall05 has said it all, I'm 49 near 50 oh no lol :-) I'm just on the road to transplant just had tests in local hospital and now waiting to see if I get referred to Newcastle for a 4 day assessment I'm going for it as I have 20% lung capacity live alone and life is very hard! don't leave it till it's to late when you won't be fit enough for transplant or you to old for transplant :-( not good. Good luck with your decision be positive keep smiling. Anne :-)

  • Hi Anne3006, I too am 49, 50 next month and had big respiratory test at local hospital on Wednesday, I've to get results of that in June when I next see my consultant.I have under 20% lung function but not on oxygen. Can I ask what test you had done at your local hospital? I'm getting in a right tizzy worrying about all this,but , I know it'll all be for the greater good .Good luck to you.

  • Hiya Caz, lol are u at the 50 before me I'm 30th June, when yours? I feel old lol. Well you sound very similar situation as me, not on Oxygen either but life a struggle you will be the same. Yes it is a worry I have severe anxiety about it all to but I'm going for it I've just completed my tests I had CT scan, dexa scan for bones, a abdomen scan, blood tests including H.I.V, breathing tests it was a long few months waiting for results etc, worst so far I have osteoporosis but not bad. Go for it I can't live like this can you? It's hard going and it does give us some hope for the future we still young yet giggle :-) what have you to lose, ask your specialist if transplant for you? U have to let them know you are serious about it. I really hope this helps, if you want any more info feel free to message anytime. Bye for now, good luck with decision making :-)

  • Hi Anne my birthday is 22nd June, 50s the new 40 so I'm told lol. I too suffer from anxiety just been given tablets for it which I'm reluctant to take as they make me more dopey than normal lol. I know having a transplant is the best thing my quality of life at the moment is very poor and I rely on people a lot. I think I'm just scared of the unknown. Thanks for chatting to me it's good to know of other people going through this. Cheerio for now x

  • Hi Heavo, like you both of my lungs are knackered after a double pneumonia which ended up as a pulmanary fibrosis. I am going through the process of transplant assessment. Iv'e had an angiogram,bone scan,oxygen assessment etc and I'm now waiting for an appointment at the QE. If I get the the go ahead and lungs become available I will jump at the chance of a new life. I know there is major risks involved but the alternative of a short life on a quarter throttle dos'nt sound too appealing either. Be positive and go for it, given the opportunity I know I will.

  • I'll be asking a lot more questions before i make my choice and thank you for ur reply Dall05

  • My husband would love a lung transplant, he has even told the specialist we would go private, but the specialist said he is too old he is 66 years of age. This is disgusting, we are prepared to go private and spend all our savings in order for our lives to be made better but we are written off.

    If you do decide, after reading other peoples comments, to go ahead with your operation I wish you all the very best and hope everything works out for you.

  • Have you looked into pulmonary valve insertion, there is a very good blog by johnwr who has had it done (just put johnwr in the search box) and a website of another blogger called Raven who has also had it done it is smh.com.au/lifestyle/lost-a... I have an appointment with my consultant on Monday to discuss the possibilities of me having this procedure.

    Carole x

  • Thank you X

  • I'm so sorry to read about your husband there should be no age limit, but the medical professionals have also made an age limit for a reason, but there is a lot of fit people over the age of 60 that I would say would survive a transplant. I know how hard life will be for him and you and your family.And you can't go private, that is disgusting. Can you appeal against the decision? Fight it!! Try and keep smiling :-) Anne I will be thinking of you both.

  • There needs to be a cut off age. We have to think not only of the transplant recipient but also of the donor's family. I'm not sure we would have as many donors or willing donor families if there was no cut off age and they were giving donor lungs to 70 year olds or even older.

    Unfortunately you just missed out. The cut off age I believe is 65yo.

    I too am too old for a transplant but I have no quibble and I see the reason for having a cut off age.

  • Given the chance i would go for it in fact i had the work=up tests and in pencil was put on the list pending blood results unfortunately they came back( having tested them twice) with very high antibody load which i was told it would be nigh on impossible to get a match ..therefore not listed.

    All the best with what ever you decide.

  • Thank you X

  • Hi Heavo

    Have you looked at uktransplant.or.net or transplantsupportnetwork.or...

    Hope you get what you want

    Regards

    Vicky

  • Thanks Vicky X

  • I am sending you a private message. I have a friend that helps transplant patients and is heavily involved in the programme. I am too old for transplant myself but wish you luck.

  • Thanks X

  • Hi Heavo.

    Is your concern that the anti rejection drugs will affect your recovery?

    I have not heard that they are mood altering or addictive. As someone 27 years in recovery I have had several major operations involving full anaesthetic, and with pain killers including morphine administered afterwards, & I have found that if such drugs are doing their pain killing job they don't appear to affect recovery. I hope that comes somewhere near addressing your concerns. Frank

  • Hey Frank,

    Really glad to have ur input on this, my biggest fear really is relapse and missing my meds out primarily.... a slip i maybe able to walk away and maybe get back from normally may kill me if i was to miss out my anti rejection drugs whilst using....?!

    Obviously the Op process it's self, it's a nine hour operation and lots of opiates too...

    ...and the choices i have decided on is life longevity, wot ever is going to get me to see my (maybe) grandchildren but definitely my son grow up is wot i want to happen. If i wud last longer having just one lung done or maybe none and that i would live longer but not be so active i'd go for that over living fast and young having a double lung transplant....

    i know there needs to a certain amount of letting go here, and living in the day but i still need to ask for help from others as to making a informed decision.

    I lost my mum to COPD last Aug and she wasn't as bad as me, she left us and her grandchildren behind which is why I've changed my mind from the double lung transplant to maybe just the one or even none, if was to live clean now and not deteriorate anymore.....

    Sorry to waffle on Frank

    Thanks for any input u can supply

  • A few thoughts Heavo, in no particular order. Bear in mind you need to distinguish between my experience (which you can't deny) and my opinions (which you will have your own ideas about).

    1) You have to be alive to stay/get well in recovery.

    2) If you relapse you're likely to get dead anyway so leaving off the anti rejection drugs would just help the process along - so not terribly significant.

    3) You WILL deteriorate in your COPD - no question - I have been shocked at the speed of deterioration over the last 15 months, from pretty normal to the situation below.

    4) I'm a very long way down the slope, can barely walk even with virtually 24/7 oxygen, on the end of a 50 foot tube in the house or a pure oxygen cylinder when out, which lasts about 2 to 21/2 hours. Life is very restricted. Just last Wednesday started having a stair lift fitted (£5600) and I use an electric scooter with a little crane in the car to get it in & out £2k approx) I'm lucky to have enough savings to do that.

    5) None of my doctors/nurses will give any predictions about time remaining - they just say I could get a severe pneumonia or heart attack any time.

    6) When asked to share about my years of recovery I emphasise that I've been too solemn about it - I should have enjoyed it a lot more.

    7) Step 2 - substitute surgeons in the appropriate place?

    8) Whatever you decide, best of luck with both diseases.

    Frank

  • thanks Frank give me a while to process and reflect,

    Thanks so much for replying so fast..

    X )

  • Whatever you decide I wish you all the luck in the world. Sorry i could not offer any other advice xxxxx

  • Thanks Ozzygirl X

  • You are most welcome xxxxx

  • Hi I have been on papworth hospital waiting list for 4 months for a pair of new lungs ,I have emphysema I am 57 .I lossed my Dad ,and sister too emphysema both at 57 .

    my lung fev is 20 % and I have if really lucky have 2 years , what have I got to lose its a no brainer for me . I could have 2 years of getting weaker by the day, or hope and a chance of a better life even if I get a storter life I will be able to have a life .the meds I will be on after the op will be to keep me alive and my changes are as good as anyone else .

    your transplant team will want you and will make sure you are 100% for it before going on the list they need to know you will take meds as you should ,look after yourself ,keep apointments , keep fit ,and not pull out when that call comes .

    I hope you make the choice thats right for you ,good luck Jackie

  • If you need a pair of lung why go for just one .Your lung Drs know what is best for you so I would take what they say as read . I know what my lungs feel and are like for me ,but my transplant team know 20 people just like me every year .I feel safe in there hands trust them to do the best for you .Jackie

  • I have recently had a double lung transplant. Nobody can tell you how long you will live because they simply don't know. Anyone that puts a timescale on it is being speculative at best and in my opinion irresponsible. The average survival is 5 years and I was told of one patient from Harefield that lasted 25 years so far and still going strong.

    Good luck with whatever you decide

  • Hi,Heavo i have had my lung transplant on 29th Nov and will be leaving hospital soon. I had some complications but i am self medicating and doing well. Please private message me to chat. Tony

  • Thanks Friends I'll reply wen i'm feeling a little better got a virus at the moment X )

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