Almost home.........again!

Hi all I hope you are all taking things easy in this cold wind, just a quick blog to bring things up to speed.

After my bi-lateral lung transplant on 29/11/12 and being at deaths door a couple of times I recovered and was discharged on 17/01/13. I was 22kg lighter than when i went in but had a new pair of lungs YAY!!

The following monday 21/01/13 was my clinic appointment to check bloods have an x-ray etc as soon as they saw and heard me they had me on oxygen and prepped for a bronchoscopy! The infection they thought had gone was back and holding on to where my tubes were healing so I was re-admitted for a 2 week course of two types of antibiotics one by IV.

I am able to come home for a few hours today and I will be discharged again on Monday and hopefully home for longer than last time!

For all of you out there on the transplant list or deciding whether its worth going for it I say this to you - dont give up hope - it is worth it - it will change your quality of life. I had complications that not many transplant patients have so my journey has been a hard one and i still know I made the right decision. I take around 28 tablets a day which was a little daunting at first but a few weeks in and I can do them up without looking at the book now.

I hope this blog helps even just one of you out there as much as it helps me to write it.

Feel free to ask me any questions by message or comment,

Thanks for listening

Tony

29 Replies

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  • Hi Stitch unfortunately there is no wifi but you could get a cheap pay and go dongle to stay connected!! Thanks for your reply too its nice knowing people are out there

  • Hi Tony you are an insperation for all of us.

    Richard

  • Good luck with your recovery Tony. xx

  • Good luck :-)

  • Carry on the good work So glad you are feeling well again x

  • What an uplifting blog Mr Wheezy, thank you so much for sharing this with us. I'm sure you have given hope to those who have been offered the chance of transplant.

    I wish you better health and much happiness for the future :)

  • Great news! A new lease of life for you,onwards and upwards I hope you continue to heal and feel better and better each day! hugs Carol :) x

  • Thank you Mr Wheezy for letting us know how you are. After much deliberation I am now on the list. A close friend of mine said I had to allow myself some hope.

    It really helps to read such wonderful stories such as yours. Keep in touch.

    Tracey

  • A mahoosive hello Tony!!!!!!!!!!!!!!!!!

    Was mega chuffed to see you posting on here. I am sooooo happy for you and your wife must be thrilled to bits. Sounds like you really have been through the mill but thankfully your positivity has paid off and the marvelous medics are working their magic on you.

    Keep us updated on your progress please hun, take care ok xxxxxx

  • Hello Tony

    So glad your doing well, hope your home for good really soon.

    Kim

  • Hi Tony, good to hear that you're on the road to recovery and able to go home. Transplant was mentioned to me when I was in hospital recently and I'm struggling to make a decision. It isn't definite yet whether I will be put forward for a transplant yet, but I'm trying to work it out in my head which way to go, it's confusing. Your post is certainly helpful. Good luck with your return home. Take care, Richard

  • what fabulous news XXX

  • Good for you Tony. You are an inspiration and hope all goes well for you. xxxx

  • Hi Tony,

    Just read your inspiring story & I have to say - I shed a few tears of joy for you.

    Please let us know how you doing/coping/feeling as you progress through recovery - that would be so illuminating for everybody.

    Best Wishes,

    Sue

  • Good luck with you're recovery Tony, you are very brave.

    Best wishes xx

  • This is my first posting so forgive if I'm asking questions that have been asked before. How long did it take from being offered your transplant and it taking place? I realise that all the tests for compatibility have to take place first. I have been offered lung reduction surgery for COPD and the issue of lung transplant was also raised but not pursued at the time.I'm just wondering whether I ought to raise it again with consultant/ surgeon when I see them?

  • Hi Lizzifer. My IPF was very rapid and after diagnosis in march last year by june i was end stage. I came in for transplant assessment in july and as i was otherwise fit and only 38yrs old i was accepted. So i waited just over 4 months before transplant. Transplant is not for everyone and in some cases the best treatment is lung reduction but it is definitely worth asking your specialist the question. I have found that there isnt a silly question to ask as they have heard them all before so ask away! Hope that helps

    Tony

  • hi there lizzyifer. some years back now when I first started being breathless the lung specialist said that a lung reduction surgery would benefit my condition... after having a c'scan (tomography) scaring was seen all over both lungs so it was no use to have redution surgery...but I did wonder why a transplant was never mentioned as I am fit but for my lungs ....anyway liz press for transplant, be happy it helps

  • Many thanks for your reply. Although I'm a lot older than you ( 63), I.m fit and healthy other than my very severe emphysema, going to the gym twice a week ( I exercise with O2) and able to manage my housework and shopping. I stopped smoking 20 yrs ago but still got the dreaded COPD. I will talk with my consultant.

  • Hello again mr Wheezy, Sorry for my totally self absorbed response to you.........Just wanted to say I'm delighted for you with your recent transplant and wish you all the best for a long and happy future!

  • Hi Lizzifer no need for an apology we all have a different story to tell and when you are new to the site its good to get it out there. There are lots of people on here to help with virtually any topic!

    Thank you for your well wishes and i hope you get some answers from your specialist

    Tony x

  • hey there Tony.hope things go on being good for you.And I hope to hear many more success stories like yours.It will give others encouragement,It is strange how a lot of people do not get offered that option to have a lung transplant. be happy and be good all the very best

  • Hi Tony, Thinking about you, not heard from you for a while and just hoping you are ok. Please let me know. I got called in two weeks ago but unfortunately the lungs were not fit for transplantng so back on the waiting game. Look forward to hearing from you. Susie Q. xx

  • Hiya yes all the blogs about transplant help urs especially I'm currently struggling to breathe every day I'm going through all the tests at my local hospital before they refer me to Newcastle its a challenge, does anyone know what tests we get done in Newcastle ?? Do u get the MRI and a lung biopsy? Needle through ur back to take piece of lung? I would appreciate help in knowing what's next when they refer me to Newcastle.

    Thank you good luck to all in same boat :-)

  • Hi i just seen your message about you tests for going on transplant list ! This has been going through my mind this last year . What is your condition treatment etc how did you go about getting refered. ? I have had asthhma since i was 5 i am 65 now. And have bronciectasis and copd. Im really struggeling now. Nothing seems to make much differennce to my breathing. And i feel this maybe only option. ! I. Been in touch with various groups but i just get facts and figurers. ! I,m sorry i cant help you ,but maybe you could help me. Good luck on your journey. Sue. X

  • Hiya Sue , Thankyou for your message I will try help u as much as I can, so sorry to hear u have had breathing problems most of your life oh my how hard it is to breathe on near every breathe I have severe COPD ,20% lung capacity and I struggle to breathe on a daily basis sometimes gasping for breathe! I feel for anyone going through the same! and I thought I was on my own! does anyone understand until I have read so much on this site!!! Brings tears to my eyes as I do fully understand and most of the professionals don't understand as it's not happening to them, but I'm sure they have a fair idea. I never knew nothing about COPD at first now I know all after research. I am 49 and no quality of life but I make the most of what life I have left. I've just handed back two grandchildren aged 3 and 1 year old after having them for 8 days, omg it was the hardest week of my life!!!!!!! But they didn't suffer but I did for sure, my daughter went for an operation to Prague. She happy as now and well again. Lucky I survived that week it lol giggle no matter what I keep smiling and having a laugh :-) mine is a very long story but yes I'm hoping to go for transplant, but I don't hold much of a chance I don't know but I was a smoker, which they blame for COPD , I was also a carpet cleaner using a lot of hazardous chemicals!!! I'm determined not to go in wheelchair as I don't think I will get out of it ever, but it is a mode of transport giggle when u in hospital, but it still struggle with the hallways giggle lol. I went to my very nice doc with my support worker and we talked about transplant, but I was in denial mmm I didn't stop smoking for 3 years!!! And ended up in ICU in hospital for month, oh dear!! I was fill of anxiety had to get home, breathing a lot better, not using the fan to breathe anymore!!! My doc referred me to specialist then I've been doing tests ct, bone density, lung function tests etc I have another scan and a sycoligist report and then if I pass the nice specialist will refer me to Newcastle that's where it ends I don't know much more but learning fast lol any other questions please just message me, hope this helps Sue :-)

  • Thanks so much for your reply ...isnt life a b %<@~ r. You see people who take a simple thing for granted like breathing and it does make you angry doesnt it i did work ttill i was about 40 as a nurse but it became harder and gave up when i was worse than the patients. ! I take my hat off to you for having the g kids they hard work when u well. .mine are 14 and 20 so verry helpfull when they are here as i am sure you will find out. !!! I know what yiou mean about wheelchair ....its a pride thing isnt it you feel you giving in ! We just had a stairlift ,hhbby been trying to persuade me for 2years. We thought about bungalow then i thought that really would finish me off ....so gave in ..wouldnt admit it to hubbybut it really helpfull !! Well thanks again for your reply. I hope you get your wish it must be so difficult physically and mentally too .good luck. Lrt me know how you go on. I send you my love and prayers for the future. Xx. Sue

  • Thank you :-) keep smiling

  • Mr wheezy good to hear ur on the mend wish u all the luck for your future and hope all well. U have had hard time, time to start ur new life wow

    I'm just at the beginning not on list yet, just doing tests at local hospital to get referred :-) scary stuff, I'm 49 and hope to get transplant before it to late everyday is a challenge and think about every breath!! I live alone and my anxiety hits the roof until I take a diazepam to calm me down.... Did u go through all this? :-) thanku

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