Transplant Update

Four months ago tomorrow, a phone call altered the course of my life. Harefield Hospital Transplant Unit called me in and on 13th November I spent the best part of the day in the operating theatre receiving a nice new pair of lungs. When I first came round in the hospital, I really wasn't well and struggled to comprehend what was happening around me. This was a very difficult time for my wife and family. However, after about three weeks, I started to feel more normal but was then struggling with the strict regime of medication resulting in almost 60 tablets per day. Day by day I have improved and have now been home for just over two months. In that time, I have regained my strength and weight and now feel better than I have felt since about 1990. I can walk over a mile without becoming breathless and my check ups at the hospital have been extended to just once per month. My quality of life is gradually improving and the tablet regime is down to a manageable 30 per day. Anyone out there nearing the point when a transplant is the only answer, if you want to contact me I can give you more detail on the experience I have had and the outcome achieved. I used to say that I had good days and bad days, but now realise I had bad days and worse days. I also used to joke that breathing was over rated, but now appreciate how ill I was. Good luck to all of you.

23 Replies

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  • Thank you. It's a possibility for me down the line and its great to hear the difference it'sade to your life. Thanks for posting

    Marie x

  • What wonderful news AllBlownout :) Isn't it truly amazing what can be achieved these days and it's great to know that you are feeling better as each day goes by and long may it continue :)

    Keep on keeping on ....

  • So pleased for you - great to hear of a success - live long and be happy.

    Chris

  • Fantastic news,,,, you keep well and live your life well......

  • Glad to hear it's worked out so well for you. Take care of yourself.

  • Very pleased for you.Thank you for sharing your experience with other people.

  • Very pleased for you.Thanks for taking the time to share your experience thank you

  • Good to hear. I'd donate parts of my body but I've probably worn most of the bits out. :)

  • Well done. It is so good to hear from you. I hope I will soon be in the same situation. I hope the days ge better and better.

    XXX

  • I am very pleased to hear how well you are doing. Long may it continue. x

  • wonderful......

  • Wow thats fantastic. Well done. I Bet its feels great being able to be much more active again. Carry on the good work.

    Bev xx

  • What fantastic news, Bless you.

    Kim

  • Excellent news

  • So pleased for you. Long may your recovery improve and be sustained. I have received my assessment from Harefield and now await placement on List, subject to couple of caveats like reducing BMI to less than 30. Very nearly there, but last few pounds seem to be most difficult due largely to inability to exercise. I have to and will persist as I know how lucky I am to be given this opportunity to alter my life. Your posting has inspired me and though still obviously scared your wonderful news is shared by me and, I am sure, many others.

    If out there, this is not an option open to you, keep your spirits up as well as you are able. Whilst sometimes quality of life varies and we all have ups and downs ( I was discharged yesterday from hospital after another excacerbation), keep your chin up and don't give up however you feel and however difficult.

    My love to all fellow sufferers. X

  • I envy you so much ,you must feel like you are starting a new life..good luck. Bob..ps. and health.

    never give up..

  • Thank you too bobshir, I am still benefiting from your buteko help.

    (off subject sorry Alblownout )

  • Thank you for this update, I'm pleased you have done so well and was interested to hear about your experience. My neighbour had that done nearly 20 years ago, I'm pleased to say he is still doing well, it's wonderful.

  • hi am new on hear 4 month really.i was reading bout u.hope ur very well.im really happy for u and u wrote u had a family.well im happy for ur family they have u back with them nice 1.god bless all of u.i live in oldham but its a bit backward as for copd is concerned.im 63 a gran.ceased cigs 4 month ago wen i found i was copd moderate .no thanks to myold gp ignoring xrays from last yr.i have a new gp now.but no 1 mentions consultants lvrs transplants nothing.just c u nx yr.ive asked new gp if i can ave i think its rehab were u exercise.im still waiting.dont no how long that takes.it feels ive been told yes u have copd moderate bye c u nx year.just ring 4 repeat prescription 4 seritide and blue inhaler.i really dont think its taken serious hear in oldham.i asked 4 pain relief i got paracematol.cs i have pain under left rib cage it never ever gos.any advice .take care you deserve it

  • You should ask your GP or Consultant to refer you for Pulmonary Rehab. It will help a lot. Stay off the cigs and use your inhalers regularly and you will hopefully never get bad enough to need a transplant. Good luck.

  • Thanks AlBlownout, Your going to have to change your name now you can breathe normally. I'm haveing my part 2 lung transplant assessment done on the 25th of this month. I'm 53 and able to cover 408 metres, off oxygen, in 6 minutes and take about 5-10 minutes to recover from that.The transplant consultant says that I am ill enough for transplant and fit enough for the operation so what other hurdles do I have to jump in the part 2 of the assessment. Iv'e already had an angiogram, broncostomy and lung wash out, bone scan, kidney test, blood gases, spirometry, full bloods check, x ray, and ct scan at my local hospital so what else will they want to check.? I'm there for 3/4 days so I'm pretty sure there going to find a lot more to look at. Many Thanks: Tony. My Family are finding it to be very a very stressfull time but I'm dealing with it all very well. There are massive risks in the transplant operation but then there are by crossing your fingers and hopeing the next infection that comes along is'nt going to finish me off. I'm between the Devil and the Deep Blue Sea. :)

  • Thanks for the name change tip, made me smile! You are similar to me, I am 52 and felt I had no choice with the transplant. I could do about 300m in 6 mins but it was the imagery of my lungs that swung it, they looked like pieces of lace. Part 2 is more of the same. However, they will have someone talk to you and you will think they are trying to talk you out of it. They tell you all the worst parts and all the things that can go wrong. It is important that you take it in because its all true. Even if the operation is as successful as mine, the fist few months are stressful and you can't help wondering if you've done the right thing. For me, now, it definitely was but it doesn't work for everyone. Your family will feel the stress more acutely than you. its worse for them in the early days after the op too, cos you wont know where you are. I was almost 3 weeks in ITU and 7 weeks and 4 days in hospital. Feel great now though although I still have a few minor issues. I wish you and your family the best of luck and if I can help, please get in touch.

  • Back again AlBlownout or maybe (Transman). Well at least I have already had experience of ITU and what its like to come back from close to death. I was sedated and on full life support for a month and it was a further 6 weeks before I got out of intensive care. That was then followed by another 6 weeks on the wards. When I finally left hospital I was still in a pretty bad way, on my last day they did my 1st ever 6 minute walk, I managed 100 metres on 5 litres of oxygen and was followed by my daughter with a wheel chair which I had to sit in 5 times to get my breathe. Whew, those were the days, by now I had started to regain weight but was still 2 1/2 stone lighter than I was 4 months previous when I first entered those hospital doors. That was July 2010, I am much better now but the lungs are a mess, kind of like your old ones so the decision for transplant is made easier knowing that the only way is down from here. Its good to talk to somebody who has been there and done it and I'm sure this is not the last you will here from me. Thanks again AlBlownout out for shareing your amaizing experience with us all, believe me its very helpfull. Tony.

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