Transplant birthday/Mental Health Awareness Week/Lung Transplant Consultation

[dodgylungrunner]

Today marks 15 years since my bone marrow transplant for leukaemia. Crazy to think so many years have gone by and a definite cause for celebration tonight with my Dad and wife - we're going for a curry.

Been a lot of up and downs along the way not least the development of my PPFE which as you many of you will know from previous blogs doctors believe may be caused - at least in part - by my stem cell transplant.

One of the toughest aspects of developing the condition has unquestionably been the mental aspect of having a degenerative lung condition which I know that you can all relate to on some level. I'm really keen to raise awareness about lung disease in any way that I can and was honoured to be asked by the BLF to write a blog about my experiences which is now live on the website: blf.org.uk/your-stories/how...

They've also posted my blog on the BLF Facebook page where they are keen for others to share their own experiences for Mental Health Awareness Week. If any of you have a couple of minutes spare and are happy to share your experiences then please do so as it will hopefully encourage a few others to do the same. Here's a link to the Facebook page: facebook.com/britishlungfou...

Last and by no means least I have my second appointment at the Lung Transplant clinic tomorrow where I'll go through all the various tests to see where I'm at in regards to my prioritisation for a lung transplant. I don't feel too bad so I'm hoping that's some way off yet. Talk about no rest for the wicked though eh?!

[sassy59]

You’re such an inspiration Andy and you just keep going. You’re a true Ambassador for BLF and I wish you all the very best.

Love and hugs xxx 😘💖😘💖

[dodgylungrunner British Lung Foundation in reply to sassy59]

I do my best sassy59 ! Hope you're doing alright? How do you deal with the mental side of things?

[sassy59 in reply to dodgylungrunner]

With difficulty sometimes Andy, I just have to get on with things. I do my crying in the shower.

Music is my saviour and time to myself when l can get it.

Take care xxxx

[Hidden]

Wishing you all the very best. 😊 Majt

[dodgylungrunner British Lung Foundation in reply to Hidden]

Thanks Hidden . Hope you're well and having a good week?!

[HungryHufflepuff]

Enjoy the curry with your dad and your wife. Thanks for everything you do. Wishing you all the best 🤞

[dodgylungrunner British Lung Foundation in reply to HungryHufflepuff]

I had a great curry thanks HungryHufflepuff - was nice to celebrate such a milestone. Transplant assessment clinic yesterday was a return to reality though as I might need some further investigations on my heart after the echo wasn't quite as good as last time. Could turn out to be nothing so not going to get myself too worried at this stage. On the upside, there's no sign of a pneumothorax and I certainly don't need a lung transplant yet.

[HungryHufflepuff in reply to dodgylungrunner]

Wishing you all the best for your heart investigations should you need them. It's good news about your lungs though. Long may things look up for you 🤞

[skischool]

Andy i don't do words like inspirational but i reckon you represent a very good example of an old military abbreviation when it comes to dealing with your conditions that is the 7 P's

7 p's=

Prior Planning and Preparation Prevents a Piss Poor Performance

Keep on doing all you do and i am sure you will outlive us all,enjoy that curry.

Best wishes Ski's and Scruffy

[dodgylungrunner British Lung Foundation in reply to skischool]

Thanks skischool ! Doing the best I can which included enjoying my curry on Tuesday.

[casper99]

I'm so sorry to read what your going through, most people would feel the same, in your shoes, including Me.

I haven't got much, worthy advice except to say, try and just live each day, without thinking about the future, at least until thing are more clear.

I know, it's easier than done. xx

[dodgylungrunner British Lung Foundation in reply to casper99]

Thanks so much for taking the time to read my blog casper99 and for the advice. Completely agree that it's all about living each day as it comes and trying not to worry too much about the future and things that at this stage are unknown. Hope you're well?

[casper99 in reply to dodgylungrunner]

I'm fine, thank you. Take care of yourself xx

[Caspiana]

Wishing you good luck for your transplant assessment Andy! xx 🙋

[dodgylungrunner British Lung Foundation in reply to Caspiana]

Thanks Caspiana ! Transplant assessment was a mixed bag in the end. On the plus side there's no sign of a pneumothorax and no need to be considered for transplant any time soon as it stands. On the downside, the heart echo wasn't as good as they liked and I might need to go for further investigations. Then again I might not so trying not to get too worried at this stage.

[Caspiana in reply to dodgylungrunner]

Hmmm...Having bad lungs naturally puts a strain on our hearts. It is always a worry . But I think you are in good hands dodgylungrunner . Just take it a day at a time. Good news about not needing a transplant soon though. Take good care. xx 😊👍

[simplesprout]

Wishing you all the luck possible andy, best wishes.

[dodgylungrunner British Lung Foundation in reply to simplesprout]

Thanks simplesprout ! Same to you too with whatever life throws at you! Hope you're well?

[Hacienda]

Hi Andy, Sending all my Positivity for your Lung Transplant Assessment. Carry on being Happy & Strong. Love n Hugs. xxxxx

[dodgylungrunner British Lung Foundation in reply to Hacienda]

Thanks Hacienda ! The luck must have rubbed off as there's no sign of a pneumothorax and no need to be considered for transplant any time soon as it stands. Only slight concern is that the heart echo wasn't as good as they liked and I might need to go for further investigations. Then again I might not so trying not to get too worried at this stage.

[katieoxo60]

Nice to hear of a sort of success story. Keep well and enjoy each day as it comes, life does go on and we must make the best of what we have, which you obviously are . Best Wishes for the future.

[dodgylungrunner British Lung Foundation in reply to katieoxo60]

Thanks katieoxo60 ! I'll keep battling on and completely agree that we need to make the best of what we have and take each day as it comes. Curry was lovely, yesterday was a bit up and down with my lung transplant assessment and tonight I'm off to my father-in-law's retirement drinks!

[katieoxo60 in reply to dodgylungrunner]

Enjoy that retirement drink with your dad.

[FlossyF]

Enjoy your curry night. I am going to read your blog once I’ve got my driving lesson out of the way! You are an inspiration Andy. Liz x

[dodgylungrunner British Lung Foundation in reply to FlossyF]

Thanks FlossyF ! Hope the driving lesson went well? I still can't drive and haven't even had a lesson yet so be interested to know how you get on.

[Izb1]

Wishing you all the best Andy, enjoy that curry with yiur wife and Dad x

[dodgylungrunner British Lung Foundation in reply to Izb1]

Thanks Izb1 ! I had a lovely curry with my Dad and wife. Crazy to think 15 years have gone by so quickly!!!

[Hidden]

Great right up I hope all goes well for you and you get plenty more good years never give up and always keep a purpose to get up for every morning as i feel when your mind doesn’t want to carry on then your body eventually gives in to, it’s like these old people who have lived together for a very long time and the other partner dies and not to long after the other person dies of a broken heart because they did not want to carry on so they pass away so remember never give up everyone.

[dodgylungrunner British Lung Foundation in reply to Hidden]

Hidden thanks so much for the pep talk. Sometimes it's hard to stay upbeat but you soldier on and I will continue to soldier on as long as I've got lungs to keep breathing. Hope you're well?

[Hidden in reply to dodgylungrunner]

Hey no worries I’m okay been having breathing problems myself not sure if I have a lung or heart issue or maybe both, I have had chest X-rays but came back normal after I had an infection about 8 months ago and never been right since, I have low oxygen on pulse oximetry and started having arrhythmias so on beta blockers now and I’m having a echocardiogram next week that I have waited over 3 months I’m dredding it but then I’m glad it’s coming as hopefully we can get closer to a diagnosis as not knowing is the worst thing.

Like you I try to soldier on I used to be very fit climbing mountains, cycling and weightlifting and kayaking and more but my mind still wants to do that but my body can’t so I’m struggling but I keep going for my children if it wasn’t for them don’t know what I would do but they keep me going.

I think I have emphysema I gave up

Smoking 8 years ago but started at 13 as it helped my nerves as a kid after a brutal murder in my family but I guess time catches up with us and smoking was cool back then wasn’t it but like you say you got to keep soldiering on.

[FlossyF]

Hi DLR, lesson went well thanks. I am not a learner, I passed my test 30 years ago but living in London, I kinda lost my confidence. I now live in rural Suffolk and the driving is a lot saner here lol so feel brave enough to venture out in the car again and thought I’d have a few refresher lessons. Loved the blog. Liz x