With everything that's been going on with my lung disease over the past few years, I often forget just how fortunate I am to still be here.
In September 2003 I was diagnosed with chronic myeloid leukaemia at the age of 18. I was totally blindsided and the future looked bleak. The amazing treatments that are now available were only in the very early stages of clinical trials at the time with no guarantees of remission. Transplant was the only real viable option available but there was no guarantee that a donor would be found and the transplant itself came with great risks. However, a donor was found within three months of my diagnosis and the transplant followed less than six months later in May 2004.
Post transplant there were no immediate complications and I've been leukaemia free ever since. Bar an under active thyroid, I have had virtually no real side effects or issues as a direct result of the transplant (though the doctors are not sure whether the transplant may have played a part in my lung disease). That's remarkable when you stop and think about it.
In many ways I guess I'm at a similar crossroads now with the potential lung transplant as I was back in 2003 with the bone marrow transplant. I don't know quite how that's going to work out but reflecting back on my experience of cancer on World Cancer Day has reminded me how lucky I am to still be here. In spite of my puffers and the uncertain times that lie ahead, I have a lot to be thankful for and should take heart and courage from my cancer experience as I head on to my next challenge with the lungs.
They say one in two of us are affected by cancer in our lifetime so I imagine there are quite a few of you out there reflecting today. Sending positive vibes to you all xxx
Written by
dodgylungrunner
British Lung Foundation
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Good for you Oshgosh . I'm always amazed just how much we can adapt to do despite our limitations sometimes when we put our minds to it. I saw a video on the BLF's YouTube channel the other day of a lady on oxygen who had become a specialist gym instructor. Inspiring stuff!
Thing is.if Isit at home rotting,I will be even worse.I go to the gym,don’t do an awful lot, it keeps my joints, muscles,etc going.my main problem is breathless ness.
I have had 1 cataract done,waiting for the other one.
Also have wedge fractures in my spine due to long term steroid use,but my lungs can’t cope within them.
The good news this week is that I’m getting a Walker,hopefully this will relieve the pain in my back so that I can walk further.this alone will cheer me up. I wish I was as brave as you x
Thank you so much for filling in your story. What an amazing young man you are. Just in awe of your attitude. Do you have OB syndrome as a result of the stem cell transplant?
I do my best Kate though I'm not all that young these days. I've never been diagnosed with OB syndrome though that's not to say that I haven't got it and they certainly think that my stem cell transplant had a part to play with my lung disease. Some amount of GVHD at some point also hasn't been ruled out but in reality they don't really know.
All a bit frustrating but nothing I can do about any of that. Just got to keep going, ask lots of questions at the assessment next week and take my time to make a decision and then live my life as best I can.
Thanks as ever for all your support and virtual hugs
Very kind of you to say CDPO16 . Lung disease is scary and the lack of certainty on progression and the lack of treatment options and understanding of how to combat it is frustrating. Researchers and doctors will get there but only with more funding and support.
Yep. I'm in the UK and being treated by the Brompton for the lung disease and the sister hospital, Harefield, are in charge of the transplant side of things. How about you?
I've had a bit of a bonkers journey there's no doubt about that. Lots of challenges and a fair few lows to contend with but plenty of highs too. My only real sadness is the fact that I can't be care free and haven't been able to be fully care free for the best part of 10 years. Doubt I ever will be again to be honest but hoping that I might be able to enjoy a better quality of life if I do go for the transplant.
You’re a remarkable person Andy and an inspiration to others. I hope you have a great future ahead of you which you’ll face with your usual courage and determination. Take care dear friend. Thinking of you Xxxx💜🤗
Thanks sassy59 ! It's an amazing community on here and I've taken so much encouragement from everyone's lovely comments and advice. I hope that I have some good times ahead, too, though it's crazy to think that I'll have to make myself a lot worse in the short term in order to get better if I do decide to go ahead with the transplant.
Really hope you're well and thanks so much for all your support as ever.
Thank you for your story and positivity , you are such an inspiration to others , especially ones who are on their own journey with cancer. You now have another challenge ahead of you, but I'm sure you will face it in your own inimitable way. Very best wishes xxx❤️
Thanks HollyBoyd ! A huge challenge lies ahead whichever decision I go with. I'll give it my best shot and I'm very lucky to have such amazing friends and family to support me. This community is also AMAZING - always give me a lift and have great advice.
Hello Andy, your lovely photograph says it all, you are a real credit to all & no doubt by your positive attitude you will as before sail through this forthcoming journey too, you also have youth on your side Andy which helps tremendously, you really are an amazing young man.. Wishing you well, with much love & may God bless you always..xx. Primrose123!!!xx💝
I love your optimism primrose123 . If I do decide to go ahead with the transplant (providing it remains an option after my assessment next week), it'll be super tough and I'll need all the positivity I can get. I'm not always positive but I'll definitely give it my best shot.
Yes, Andy, you are indeed a very positive chap, you are doing incredibly well to date, always remember you are what you think,& the power of 'Positive Thinking "works wonders.. You have it all Andy,excellent personality, age on your side, very handsome,& above all, "Very Positive" you have so much going for you, that you must keep telling yourself, I can get through this, & you will Andy, you are a very smart chap,& you Must sweep all Negative thoughts aside,& replace them with Positive ones,& before you know where you are all will be well again... I myself went through major surgery 3 years ago Andy, I was in a coma for 2 weeks & hospitalised for 8 weeks, my family were sent for & told it was 50/50 & that I may not survive, (I think that they say that to everyone who is having major surgery)& do you know what Andy,I came out totally unscathed & have never looked back, I do feel that everything will work. out well for you too Andy..I wish you well & you will be in my thoughts & prayers, every step of the way.. With love, & may Good bless you alwaysPrimrose123..x
I completely agree that positivity is a state of mind that you have to work really hard to get into sometimes but can do the power of good. Sounds like you needed plenty of it to get through your own experiences after your surgery. I hope you're now well and enjoying life?
Such a brilliant attitude, you’re an inspiration and I’m sure you’re positivity will serve you well at you’re next hurdle You’ve been through so much and more to come 🥲 but it’s obviously made you the strong character you are now 😃 x
The leukaemia has definitely made me more resilient. The positivity is a bit of a shield and was easier when I was younger to be honest. Lot more doubts in my head this round but I'll give it my best shot whatever I decide to do. Thanks so much for your support!
I’m a very positive person ….,70% of the time but I don’t think people are born positive, it’s a choice ,like most things in life ,and being positive doesn’t necessarily take away all fear or worry , but it does keep the panic under control, a useful tool to have when times are tough. You’ve a big decision to make , weighing up options to do ,but I’m sure you’ll make the decision that’s right for you and go forward into the future with your positivity shield helping you through 💪😊. Wishing you the very best of luck and a bright and happy future x
Completely agree Thepainterswife ! It's impossible to positive all the time and sometimes you have to accept that you're not in a good place. What's always got me out of any funks is exercise and the knowledge that after every down there's always another up. Easier said than done when you're naturally more positive than negative of course but that's always been my way.
Big times and decisions ahead but I'll give it my best shot and will do my best to roll with the punches in the meantime.
You do that 💪. and keep us updated of your journey in the highs and the lows so we can try to cheer you up or better still cheer you on to the finish line 🥇x
Your story reminded me of Nobuko, my friend who had leukemia. She had a bone marrow transplant and underwent chemotherapy afterwards her lung function began to drop. They never gave the disease in her lungs a name as she wasn't able to undergo a biopsy but it seems to me there is a link between cancer treatments and lung function.
You are doing so very well. Can't wait to hear about your evaluation. Take care. xx 👋😄
It really is a double edged sword isn't it? You can't do right from wrong. Get treatment for cancer but lose your lung function which doesn't really come back due to scarring. 😔 I know things will never be "better" , but I hope you are managing Kcn3. *HUG*
Sorry to hear about your daughter's lung disease Kcn3 . I hope she's ok and that the disease progression isn't too aggressive. Have they given her a diagnosis?
Gosh, certainly sound like similarities Caspiana . The docs aren't sure what caused my lung disease but certainly think that the transplant may have played a part. They diagnosed me with pleuroparenchymal fibroelastosis which has only recently been identified as a type of lung disease in its own right. Cause wise they think it could have been GVHD - common for post-transplant patients - that may have started the lung disease but they don't really know. All very frustrating but ultimately no point worrying about things that you can't control.
Doing my best and been accepted by that Facebook group which I'm going to post in shortly ahead of the assessment next week. Thanks so much for introducing me and all your support.
Andy, thanks so much for posting this. You and so many others here are simply heroes. I often dip in to the posts to read such inspirational stories such as yours. Positivity I'm sure, is the winner here and your face beams with it. I wish you a calm ten days ahead. I know you are well versed in the "manual" 😄. Just keep posting Andy. We are all willing you on.
You're welcome Greenthorn . Writing these posts is good for me, too, as it helps me process everything and get my thoughts and feelings out. Feeling pretty calm ahead of the assessment next week. Fingers crossed I won't have a positive COVID test result scupper the appointment this time round!
Thank you for sharing your story with us Andy, what an amazing person you are, filled with so much positivity, keep that in your heart and mind its a joy to see and hear . I had better pull my socks up lol x
I do my best Izb1 . Writing these posts and chatting with you all keeps me going and if it helps others at the same time that's great. Hope you're doing well?
Thanks johnderby ! We all have our challenges to overcome don't we? The older I get, the more I realise how hard life can be. Hope you're well and thanks for all your support as ever.
Thanks Grace! I'll be sure to keep you updated every step of the way. The posts really help me, too, as it helps me process what's going on. Keep up the good fight and thanks again for all your support.
Thank you for posting on World Cancer Day, I'm sure you will get your lung transplant soon and face that with courage and positivity. I had breast cancer in 1989, had a mastectomy, I was 42 and am now 75 in May, cancer is such a nasty disease and a lot of people assume it will be a death sentence but it's not necessarily the case. So keep that lovely smile and God bless you xxc
Glasgowgirl1947 thanks so much for your lovely reply! So pleased to hear that you're still going strong so long after your breast cancer. Treatment has advanced so much in breast cancer in recent years which is fantastic as it has with my type of leukaemia. Sadly the same progress hasn't been made with lung disease which remains the poor cousin and desperately needs investment into research. Keep smiling and have a lovely birthday in May!
Amazing 🤩. You look great 😊 congratulations on your wonderful recovery and wishing you the very best with your next lung transplant journey. Wonderful to hear such positivity, you are just amazing! Can’t wait to hear that you have had your treatment/surgery successfully x
Thanks rachelmi ! I'm going need all the luck I can get if I do go ahead with the transplant. Trying to take it a step at a time. Next step is the transplant assessment next week. Things should be a lot clearer after that in terms of next steps.
What a fantastic photo of a handsome man. Your Positive attitude is to be admired and will get you through lifes challenges. I wish you the best of luck and health for the future .Sheila 🙌👍🥰💕
Have you been told the name of the lung disease.? More information is slowly being discovered about the link from leukaemia/ treatment/ bone marrow transplant and lung disease.
Hi Kcn3 I have been diagnosed with a rare type of fibrosis called pleuroparenchymal fibroelastosis (PPFE for short!). They're not sure what caused it but they think that I might have had some graft versus host disease in the lungs at some stage which then developed in to the lung condition. Another theory is that I had an infection which my immune system attacked but when the infection went away the immune system didn't switch off. Either way, my own immune system is now attacking my lungs and causing scarring of the lobes.
As I understand it, they are beginning to see a correlation between certain types of lung disease and long term 'survivors' of bone marrow transplants but it's still early days.
You certainly have been dealt a hard life with your luck with illnesses. We can't do anything else but carry on. It does get harder at times. Hope your having a better day. Brian
Absolutely Bingo88 ! We've just got to keep going and not think too far ahead otherwise life can get pretty scary, pretty quickly! Feeling good at the moment actually and just want to get the assessment out of the way so that I have all the info and can make a decision on my next step! Hope you're well and thanks so much for your support!
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Uplifting stories on single lung transplants needed please!
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