A couple of weeks ago I got another call from the transplant team to say that a pair of potential lungs were available. I was at the driving range with my Dad playing a round on the golf simulator at the time as part of his birthday celebrations and a million miles away from thinking about a possible transplant.
However, after two call ups already that ultimately amounted to nothing, I knew not to get too carried away and so I was pretty relaxed about getting myself together and on up to hospital. I even had a quick shower and repacked my bag before setting off.
I felt calmer than on the previous two occasions but still had a slight niggle as I wasn't 100% and had just started a course of antibiotics for a chest infection. The transplant team were relaxed enough about this though and said that they would make an assessment on my arrival as to whether I was fit enough to give it a go. Their view was that they'd rather I came along and be given the opportunity to see where it might go rather than err on the side of caution.
I think they were bang on with this assessment as I passed all their tests and I would have always wondered what if had I not given it a shot. Sadly the donor lungs deteriorated quicker than anticipated and just weren't possible for a transplantation. A third strike out.
As with the previous two occasions it was a mixture of disappointment and relief when the transplant co-ordinator told me the transplant wasn't going to go ahead. However, I was definitely more disappointed than relieved this time round which I think is a good thing.
I've found the waiting has got more difficult as the time has passed. On the up days I'm impatient to get going as the sooner I get going the sooner I can put an end to this extended period of uncertainty and sense of limbo. Life feels a little like it's on hold at the moment and it's hard to stay focussed and not feel frustrated.
On the more difficult days I'm definitely getting a bit more anxious and worried about the situation. This has coincided with a drop off in my performance on the exercise bike and the pesky chest infection which seems to have gone now as the phlegm and mucus is now clear but it's not completely gone away and my breathing definitely still feels that bit more difficult. Further justification, I guess, that the transplant can't come soon enough.
However, I'm far from desperate at this stage and know I should count myself lucky that I can cycle at all given the state of my lungs and the nature of my lung disease. A further reason to be cheerful is that I've now had 3 transplant calls in 6 months so that call could be just round the corner. My most recent X-ray also suggests little change from the previous X-ray back in February. This could suggest that the Nintedanib is having some effect in slowing down the rate of the disease but we won't really know until I repeat lung function and have another CT scan at my next appointment in March.
Whether the Nintedanib is having an effect or not, I'm pleased that my lungs are holding on for the time being and I'm delighted that the campaign for Nintedanib to become available to ALL ILD patients with lung scarring at point of diagnosis has finally been successful. It's scandalous that it's taken this long but common sense has prevailed in the end.
All in all, I'm hanging in there ok and trying not to be too hard on myself in relation to the drop off in my exercise performance. I've just got to keep going and be ready if and when the next call comes whether that be this side of Christmas or some time in the New Year.
Wishing everyone all the very best of Christmasses - stay warm and don't underestimate how much the cold air can have an impact on your breathing by constricting your airwaves!
Written by
dodgylungrunner
British Lung Foundation
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Dear me Andy how frustrating for you. I’m so pleased your lungs are doing their best to keep you going though with just the odd glitch here and there. Hoping you feel much better now and you and your good lady have a wonderful Christmas. All the best for the coming year too. I feel 2023 will be your year. Take care. 🙏🏻👍❤️💕
I'm sorry that it wasn't to be this time but hope that soon we shall be hearing from you that it really is your turn. You have done everything to keep yourself fit enough for the op and this is surely going to be in your favour when the right lungs turn up.Do have a lovely Christmas. I shall be thinking about you.🤞
Oh Andy how bloody bad luck that is for you. I’m hoping the next call is just around the corner 🤞🏼 Keep on being positive. You’ll get there. All good wishes to you and yours. Have a wonderful Christmas 🎄 Diane 😊
It is rather like riding a roller coaster I imagine and I recall previous forum members describing similar feelings in the past. I do think that you are coping with it incredibly well and I hope that you continue to be able to do so. Best wishes to you as always Andy and may you have the Christmas you would like to have. Carole xx
Thank you so much for keeping us posted. What a bugger and so very, very difficult for you and your family. But well done you for your thoughtful, realistic, reflective attitude. Caspiana’s word, pragmatic, leaps to mind.
So nice of you to keep us posted during! Thinking of you and still keeping everything crossed 🙏. You and yours have a relaxed, warm festive season too . Peege
After waiting for Nice etc,I eventually commenced Nintendanib September 2022.
I think it would have been better for me if I could have started sooner,but there’s no point in getting angry or better.the old weather is not suiting my chest,I haven’t been able to go the gym because of the weather,nor been walking. It what can you do?
It must be hard to get on with your life when you are in limbo just waiting, and I can only imagine the rollercoaster of hope and disappointment. I just want to wish you the best of luck with the next call up you get and really hope it works out for you very soon.
Wow good to hear from you and what a lot going on for you,keeping positive and active as you are is amazing and here's hoping a better outcome for you in 2023 for new lungs and a successful transplant.merry Christmas and a hopeful new year🙏🎄
I’m so impressed by your positive attitude with all that you’re going through. A real inspiration! Wishing you lots of luck and a very happy Xmas with your family x
Its good news the your lungs are hanging on in there, but a bit disappointing that the new lungs had deteriorated. Thank you for keeping us informed of your progress. Wishing you and yours a Happy Christmas.
Getting ever nearer! Sounds as if you're top of the list so despite disappointment some cause for optimism. Hoping that you are able to have your transplant soon & in the meantime enjoy a happy, relaxing Christmas!🎄x
You have come a long way to get to this point Andy and now seem ready to face the next step. I hope it will be soon and you can start looking forward x
Just read your post Andy. Not been on forum long but each day I am amazed at the resilience and positivity of others. You are a lion among men..your courage and strength knows no bounds. It is a privilege to be a little part of your journey.
Such a shame you didn’t get the transplant this time, fingers crossed 🤞🏻 for you for the next one, stay as healthy as you can & have a lovely Christmas, all the best for 2023, 😊🎄🌸🌷
Andy…. 3 calls is so positive and you need your new lungs to be perfect. It will be very soon I’m sure you’re so young they will pull out all the stops for you. Have a lovely Christmas, I’m off to church in the morning and you are first on my list of prayers. Take care and keep us all upto date we are all praying for you❤️
It must be an emotional roller coaster4u.hope Yr exercise improves as the after effects of infection lifts.great re treatment for ILD.i hope u soon get THE call xx
Thanks for the update Andy. I must say you sound so relaxed and upbeat. It’s disappointing that the operation didn’t go ahead but you need the lungs to be perfect for you. So glad you’re still exercising. Gosh I’ve noticed how the cold air is affecting me and I’m a mild bronchiectasis/asthmatic or usually well controlled Take care. Wishing you and your family a Merry Christmas and a good 2023 xx
Shame this wasn’t to be but what I’m taking from it more than anything else is the fact that there’s been three call ups in a short space of time . You must be considered a very suitable candidate so I’m sure 2023 is going to be your year . The ball may start rolling beforehand, who knows ? Either way I’m sure next year will find you building those energy levels way , way beyond your present situation and enjoying a better life . It’s Good that your feeling calm and your wife/girlfriend certainly seems very chilled in the hospital environment 😂. Have the best Christmas , both of you ,and look forward to a great new year xx
Hi DLR, Everything crossed that your next call will be the one where everything is positive and you can have your so needed op 🤞🤞. I can't imagine how it must feel to keep being sent home each time. You do your bit alright by exercising and keeping as fit as you can- your family must be so proud of you 🙂. xxx
So thoughtful of you to keep us in the loop, Andy. The most important point I take from it is, in 6 months there’ve been 3 sets of lungs for which you’ve been considered. So it’s only a matter of time before a tip-top set for which you’re compatible turn up, and meanwhile you’re staying pretty well 😊 I know it must be terribly hard, staying fit & infection free, but surely not long now 🤞
I'm sorry it didn't happen this time but you are SO positive about it all! I don't know how you cope. Have a lovely Christmas, you never know, Santa just might have the most perfect pair of lungs in his sack for you. 🎅
Good day every body not read all this my eyes are rough this morning but what i said to the family my self i dont think that every body this side xmas will be getting a lot of helpf rom the n/h s over next few months with theses strikes on with every body so all the best to those whom do get help / soorry for people whom are ill but there no help am mo all the best ghoust rider
Good to hear from you Dodgylungrunner, although frustrating that you are in such an emotionally charged stress loop.
I hadn't realised the Nintedanib campaign had been successful. That is a hugely positive step forward.
As someone who received Nintedanib at diagnosis, I know it certainly buoyed my spirits (in an expensive way!). At my 1 year review, my lung function test had improved from 74% to 79%. We'll never know if that was an actual improvement, or if I was just having a "good day", or whether the difference between performing the test, from my car, in a drive through clinic, versus this year's clinic also had an effect.
Either way, I left that appointment with a smile on my face.
I must say that I am so, so fortunate that my IPF is not yet impacting my life. I can still walk 20 miles at a stretch and do anything I choose to. What my diagnosis has done is focus my mind on not wasting any time and not deferring things I want to do.
Keep fighting the good fight. I hope your big day will come along soon.
I ve had tests & a lung function & my specialist is having a meeting to see whather i can have this medication -apparently they post the medciation out to you if you qualify ifor it
I ahve interstitial lung disease & diagnoed in 2019 & spend my days on an oxygen machine
Ive been trying to persuade my specialist to put my name down for a transplant as Ive doen all the research & know waht to expect but shes refusing point blank & finding ways to manage it & next year shes parking me off to sheffield hospital to have some tests done on my heart next year as a day patient
Hang on in there, Andy. Your time will come! 3 calls in 6 months shows how high you must be on the list and how keen the team must be to get the job done.
Frustrating - of course! Disappointing - definitely!
But you have Christmas with your family just around the corner so try and enjoy that for now. I feel sure your chance will come - probably when you're least expecting it - and I'm crossing everything I can on your behalf and hoping that you'll be posting soon to say it's happened.
I think you are amazing - if you were my son I would be incredibly proud. ❤️
Happy Christmas to you and yours and all the best for 2023. xx Moy
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