Andy J
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Another challenge to add to the list!

Andy J
Posted by
11 Jun 2014

Today's blog is slightly different from the usual in that rather than talk about my fundraising antics, I'm going to talk about my health instead.

Lung problems

As some of you will already know, I've been suffering from lung problems for some time now after complaining about my chest at one of my leukaemia check-ups back in August. I'd had a cough for as long as I could remember, was prone to chest infections and was struggling to do anything in the form of exercise.

Given my age, history and previous ability to run marathon after marathon, my consultant referred me to the lung specialists at the Hammersmith to run a few lung function tests which indicated that my lung capacity had dropped by more than a third.

A CT scan confirmed that my right lung had shrunk and that I had severe scarring and inflammation of the bronchioli in the top part of my lungs. However, it was unclear what was causing this damage and many possibilities were branded about including pulmonary fibrosis and tuberculosis.

Understandably, this came as a huge shock and was hard to get my head round given that just a few months earlier I'd completed a Pledgeit challenge of running more than 35 miles to visit my Granddad in hospital.

Initial Treatment

I was put on steroids to suppress my immune system and asked to attend lung function tests once a month to monitor my progress to see if there was any improvement. I also underwent a lung wash and bronchoscopy where they took tissue samples of my lung but were unable to find a definitive cause.

This was incredibly frustrating at the time and the uncertainty of not knowing what was wrong with me I found quite unsettling in a way that I had not experienced before - not even with the leukaemia.

Diagnosis

Six months later, after a whole raft of further tests later including an overnight stay in hospital later and it appears that I have an extremely rare condition (less than 100 diagnosed cases to date) called Pleuroparenchymal fibroelastosis or PPFE which doctors believe was brought on as a result of my bone marrow transplant.

In truth, the prognosis isn't great and there is no standard course of treatment. However, it's not all doom and gloom. The steroids appear to be preventing the condition from getting any worse and doctors are hopeful that this will remain the case for the foreseeable future.

The worry of course is that this will not remain the case forever and what's certain is I cannot get back the capacity that I've already lost which is hard to take as it means I won't be able to do many of the things I used to take for granted like running marathons and playing football competitively.

Ultimately, these are things that I can live without but it's going to take some adjustment as sport has always been a large part of my life.

I'd also be lying if I said I wasn't worried that the condition isn't going to get worse in the long run. However, there simply hasn't been enough people who've been treated for this condition specifically to be clear what the future might hold and I cannot afford to let myself worry about it something that is unknown and have no power over.

Up for the challenge

What I can control is how I deal with it all and I will adopt the same approach as I've done with everything that's been chucked my way in the past and that's take it on every single step of the way.

With that in mind, I am going to press on with my 30 before challenge albeit with a few alterations. Much as I'd love to, I don't think the Berlin Marathon (I can barely run for 20 minutes at the moment) so I've replaced this Run to the Beat instead.

Climbing Klimanjaro also looks like something that might be beyond me at this stage but I haven't ruled that out altogether just yet and will replace with another challenge if necessary.

This whole period in what's been a pretty crazy life so far has made me more determined than ever to help beat blood cancer as it appears that all of these recent problems have been brought on by my leukaemia in one way or another.

To do this I need your support by signing up for the London Bikeathon and helping me with my 30 before 30 challenges in whatever way you can.

Share my story with friends and family, encourage people to follow me on twitter, find me other people called Andy Jacksons and, ultimately, dig deep and make a donation to help me reach my £30,000 fundraising target.

Sign up for the London Bikeathon

Make a donation to my 30 before 30 challenge

Follow me on twitter

Comments

11.06.2014

Hi Andy. Fewer than 100 diagnosed cases? This just goes to show how unique you are!

In my opinion, anyone who runs any distance for "fun" is completely weird, and although I've begun to realise this about you anyway, I'm sure the Run to the Beat will satisfy your need to cover miles on Shanks' Pony, and there's nothing to stop you saying hello to your fellow runners in German (and 9 other languages)!

15.06.2014

Great blog Andy. Sorry to hear about your diagnosis, I didn't realise how rare the condition was, but it's great (and entirely unsurprising, knowing you!) to see that you're tackling it in such a positive way. Looking forward to pipping you over the line in a sprint finish at Run to the Beat...

16.06.2014

Hi Ali,

Thanks so much for your comment which made me smile! Love the idea of saying hello to runners in different languages and agree that the running long distances thing is completely nuts! Speaking of nuts, what's all this I hear about you taking part in the London Bikeathon? Great to have you on board - I'll be taking part too!

16.06.2014

Hi Dan,

Cheers mate - not much I can do about the lung thing other than take the pills and not do anything daft like taking part in crazy sporting events. Oh wait....

Really looking forward to Run to the Beat. Pretty sure I'll be some distance behind you but you've given me some motivation to up my game!

17.06.2014

Hi Andy,

Sorry to here about your diagnosis, but it's amazing that you are so positive about it. I admire your strength and courage for dealing with such a rare condition. We'll all be behind you 100% for Run to the Beat! Go for it Andy and stay strong!

Best Wishes,

Emma :)

17.06.2014

Thanks for the support Emma!

I've always been positive and I think it's important to tackle things like this in a positive way as otherwise you spend your whole time feeling sorry for yourself which isn't healthy!

Anonymous
17.06.2014

Hi Andy
Your story has left me speechless. Even more now than ever you will always be my POOC Person of Outstanding Character. I am willing you with all my heart that you will beat this. Take care lovely boy. Love Colette (Michael Corletts' Mum) xxx

17.06.2014

Andy, you  are a true hero. Your determination and positivity never ceases to amaze me. We are here to support you in all of your challenges and if you need me to take one on on your behalf I would be honored to have the privilege. Keep at it, lots of love Kim xxx

18.06.2014

Colette, thank you so, so much for leaving such a lovely comment and all your support! I can't believe I'm yet to meet you - will have to have a word with Mike! Hope you're well and thanks again for all your support. 

18.06.2014

Might hold you to that Kim! I'll get through this, don't worry, as I've got too much to live for including helping find a cure to beat blood cancer! WHEN we do that, I need to do my bit to help with lung conditions.