Strength in numbers

[dodgylungrunner]

A couple of weeks ago I visited the BLF Direct Helpline team up in Liverpool as part of my induction training after joining the BLF in December.

I was enormously impressed by everything that I saw and what struck me the most was just how passionate, friendly and hard-working the whole team are. Their knowledge is also immense and it's incredibly reassuring to know that I have such a brilliant resource to call upon if I ever need it.

I imagine many of you have used the BLF direct and would be able to give more ringing endorsement than I can. However I wanted to do my bit to praise it as I don't think the service or the team behind the service get anywhere near the amount of praise that they deserve. Thank you Carol and team for putting up with me for the day!

Over the Easter weekend I finally got back to the gym after an extended time away after my pneumothorax and repeated chest infections. The improvement in my lungs and general mental wellbeing was instantaneous and I'd forgotten just how important it is to the management of my lung condition.

All roads appear to be pointing towards a lung transplant in the longer term but in the meantime I'm determined to get the most I possibly can out of my lungs while I still can. Running is beyond me at the moment but the exercise bike is proving a decent substitute in the meantime.

I don't know if others feel the same but one of the things that I've found most difficult to come to terms with is the seeming loss of control. Self-management has helped but I really want to do more to give something back.

That's why I joined the British Lung Foundation and I'm determined to help them raise money to continue funding the wonderful services that they provide like the Helpline. With that in mind, I'm looking to get in touch with others who are either working at companies or have friends working at companies that might be able to help the charity build up relationships and partnerships that will raise funds and awareness.

So if anyone is keen on helping me do this then do reply and we can see what we can do from there.

[Antmara]

You will be a great asset to the team Andy .. you are dealing with your conditions admirably , a real superstar .

We are dealt our cards in life and it is what it is .. but it just seems some of us get a very raw deal. Life can seem hard at times , but we must make time to enjoy the good times . X

[dodgylungrunner British Lung Foundation in reply to Antmara]

Thanks Antmara! I've settled in ok and will always give 100% to the cause for as long as they want me and the lungs permit.

Couldn't agree more about life seeming hard sometimes. I'm positive by nature and always try and remain optimistic but that optimism is sorely tested on occasions and like others who are going through tough times I do on occasion feel particularly sorry for myself.

Hope everything is ok with you at the moment and wish you all the very best going forwards. I've been blown away by just how supportive everyone is in the BLF Health Unlocked community and my only regret is that I didn't find it earlier!

[Antmara in reply to dodgylungrunner]

Andy , what year and where did you have your stem transplant ? My daughter had a bone marrow transplant following being diagnosed with ALL .. she sufffers with coughs , and other stuff an awful lot now .. I have adult onset asthma which is not well controlled .

[dodgylungrunner British Lung Foundation in reply to Antmara]

I had my stem cell transplant in May 2004 at the Hammersmith so coming up to 14 years ago now. Up until 2014 I had an extraordinarily fortunate run not suffering from any real side-effects at all besides a slightly compromised immune system which left me also prone to picking up coughs and colds and things. The only other side-effect was an underactive thyroid which was caused by the radiotherapy however that's kept under control with thyroxine and, to-date, hasn't really caused me any problems.

Sorry to hear that your daughter is having a few problems which must be frustrating and worrying at the same time. How long is it since her transplant? Incidentally, I used to work for the blood cancer charity, Bloodwise, prior to joining the BLF. They are well worth contacting if you or your daughter ever want to talk to anyone and find out about support and services available but in the first instance I always get in touch with my Clinical Nurse Specialist who is brilliant.

Wishing you and your daughter all the best going forwards.

[Stumpy55]

Hello dodgylungrunner, so nice to hear from you again, I think you are absolutely amazing. You can achieve anything you set your mind to because you are completely focused and determine. The BLF team are brilliant I agree with you. Take care my friend and God Bless you.👍

[dodgylungrunner British Lung Foundation in reply to Stumpy55]

I do my best Stumpy but there are times where I definitely feel like my best isn't sadly enough and there are certainly things I can't achieve but it'll never stop me trying! So glad to have found the BLF and will always support them as they've been an absolute god send.

Hope all's well with you at the moment? God bless you, too.

[Stumpy55 in reply to dodgylungrunner]

Hello dodgylungrunner, I know you have a lot to contend with but I must say, you handle everything so well, your an inspiration to us all. I feel blessed that I found BLF as well, I've had so much support and encouragement from the nicest people. I'm on a high today because I'm getting a brand new electric wheelchair and I'm like a kid in a sweet shop. Keep Intouch please it's good talking with you. Take care ✋️🤓

[dodgylungrunner British Lung Foundation in reply to Stumpy55]

Couldn't agree more about the BLF. They've been superb as has this group. Great to hear that you're getting a new wheelchair which I'm sure will make a massive difference to you. I went for my first run since the pneumothorax on Tuesday night. Slow and coughed and spluttered a fair bit on the way round but was so glad to be back out there again. Also the sun's out today and the evenings are slowly getting lighter again. Lot's of reasons to be cheerful!

[Stumpy55 in reply to dodgylungrunner]

Hello dodgylungrunner, Thankyou , yes I'm over the moon about my new chair. I'le probably be paranoid about bumping into things, I don't want to get it scratched 😳I would probably feel it more than my chair lol. It's great that your feeling a lot better but I worry that you might over do it so please be careful. Remember small steps. I really admire you I just hope that you take doctors advice! ✋️😊

[dodgylungrunner British Lung Foundation in reply to Stumpy55]

So glad that you're liking the new chair Stumpy! I hope you manage to keep it scratch free but I guess it's inevitable it'll encounter a scrape or two at some point.

Completely agree about the small steps which my wife is also always reminding me. I'm not the most patient but I'm also realistic and certainly don't want to give myself another pneumothorax so I'll go steady I promise.

[Stumpy55 in reply to dodgylungrunner]

Good to hear it dodge, it's really not worth making yourself poorly, you should listen to your sensible wife and enjoy but take small steps. My husband has recently redecorated the house mainly because of all the smacks into the door frames where I've misjudged the distance in my wheelchair mainly because of panicking due to being breathless . Not going to do it in my new electric chair oh no deffinately not lol. My husband says he will redecorate me if I do, well that's love for you I must say lol. Nice talking with you dodgy. 😁

[Hidden]

I have great admiration for you Andy and myself only being just turning 40 when diagnosed 3 years ago I felt totally overwhelmed and devastated at some of the hurdles I have had to face ... I am on oxygen now which came as a shock as I have never needed it before so suddenly going from not using it to using it 24 hours a day gutted me ... now I just get on with it but unlike yourself I Can't exercise much as far too breathless plus heart far too fast so have to start going to the gym with someone who will guide me safely which I can't wait for ...but small steps unlike you my my you don't waste any time ...so impressed with all your achieving really hope you manage to get back out running again ...take care Mel x☺

[dodgylungrunner British Lung Foundation in reply to Hidden]

Kernety it sounds like you had so much to contend with in such a short space of time and I'm not surprised in the slightest that you felt overwhelmed. Being able to breathe is something that everyone takes for granted until it's gone. Little steps are definitely the right way forwards and I'm glad that you're now in a better place. Stay strong and remember that the whole of this community and the BLF are behind you every step of the way.

[SquirrelsHolt]

Hi there dodgylungrunner and you are 100% correct. The BLF is a real life-line for many of us and I'm glad you agree. I'm certain your praises will be well received as every person working for the BLF,in one way or another, gives a 1st class service and should be praised. So thank you for highlighting this. Also good luck in your new job with BLF and also in your waiting for a transplant. Do keep us informed.

Kind regards.

[dodgylungrunner British Lung Foundation in reply to SquirrelsHolt]

So glad that you agree SuirrelsHolt. They've been brilliant to me both professionally and on a beneficiary level. My only regret is that I didn't find them earlier as it would have made coming to terms with my diagnosis so much easier. A long road ahead with the transplant and I will definitely be keeping you all informed as I find talking about these things really helps me understand what's happening. If it helps others who may also be going through something similar, too, that's an added bonus.

Hope you're well and thanks again for taking the time to read my post and leave a comment.

[Dubba61]

Do you Swim? Dodgy. I do it's fab for lung conditions. You seem like a very determined type of person and I'm sure you will do well both in your work life and in managing your condition. Best of luck to you. Dee 😊🌻✌️

[dodgylungrunner British Lung Foundation in reply to Dubba61]

I'm not much of a swimmer Dee but really have no excuse (bar the lungs) as my mum was a swimming teacher! My days of underwater swimming and proper front crawl I fear are now behind me with my lung capacity but I'd be tempted to give breaststroke a go. Do you swim often?

[cofdrop-UK]

Well done Dodgy for the work you do supporting the wonderful team that is BLF. You will definitely be an asset to BLF and will hopefully help raise the profile of lung conditions.

Love cx

[dodgylungrunner British Lung Foundation in reply to cofdrop-UK]

Thanks cofdrop-UK! I'll certainly do my best and I'm determined to help raise awareness and funds in any way that I can. Really hope you're well?

[Dubba61]

I do, dodgy, i try to do half a mile breaststroke every other day. In my own time though. I,m not what you call Speedy! 😀 When i was first diagnosed around 14 years ago, i asked the Specialist wether the Chlorine would be a problem to my Lungs. He said that the benefit of Swimming would far outweigh the detriment of the Chemical. I've found it to be true. I feel so much better afterwards​ and would recommend it to anyone. As i also have Osteopenia it's important i get excersize. Do have a go. Start with a couple of lengths and add a couple more each week. That's what i did 😊🌻✌️

[Robin77 in reply to Dubba61]

That's so encouraging. I was wondering a bit about the chlorine. Swimming laps always let me breathe better. I'm looking forward to getting back to that.

[dodgylungrunner British Lung Foundation in reply to Robin77]

Good luck Robin77! I'm going to give it a go, too, and see how I get on.

[dodgylungrunner British Lung Foundation in reply to Dubba61]

Dee that's a top effort! Half mile is what 800 metres? Not sure I'd find that easy at all but will definitely look in to giving it a go. Very good to know about the chlorine as that would have been a concern (and ready made excuse in my head) that would potentially have stopped me from going so thanks for the heads up.

As you say I'll start slowly and go from there - not sure I'll be able to commit to every other day though. That's incredible commitment. Good on you!

[Dubba61]

😊🌻✌️

[Dubba61]

Well i don't always feel like it you know? But i do it anyway, because i know i,ll feel good after. Was a proper " Gym Bunny" at one time, cycling too. Bonus with Swimming is you can do it at any age. I,m only 5 feet tall and over 60, but I've always tried hard. 😊 As i,m sure you realise a lot of it's about determination. I hope you find out the time. Dodgy.🏊‍♂️🏊‍♂️👍

[dodgylungrunner British Lung Foundation in reply to Dubba61]

Couldn't agree more Dee! I'll post again with a picture when I do go swimming - there's a Lido near me that I'd love to try when the weather gets better.

[Dubba61 in reply to dodgylungrunner]

I,ll let ok out for, that. Dodgy. 👍😊

[Hidden]

I rang the BLF as I have a paralysed diaphragm and some lung fibrosis after an accident and haemothorax, which has reduced my lung function. I have been unable to get any help from the NHS locally with making the most of what I have, as they only deal with people with COPD. I spoke to one of the nurses at the BLF by appointment and she was really helpful in giving advice and tips and what she felt I should be asking for. I have now found a local private physio clinic which has a respiratory physio and she thinks she will be able to help, so am waiting for first appt.

[dodgylungrunner British Lung Foundation in reply to Hidden]

So sorry to hear that you didn't get any support from your NHS locally, Chris, after your accident that must have been really tough for you and isn't right at all. There does seem to be enormous differences in standards depending upon where you live which only makes the role played by the Helpline and all the more important.

Hope the respiratory physio goes well - keep me posted on how you get on.

[Hidden]

Thanks for your good wishes. I have an appt on Friday. I do feel that my conversation with the BLF nurse has helped me understand what kind of thing will help. She did suggest singing was helpful, so I have been singing around the house, possibly not appreciated by my husband!!

[dodgylungrunner British Lung Foundation in reply to Hidden]

Amazing! I've heard that singing is supposed to be good too - pretty sure that the charity has singing groups that you could look in to, too, if you wanted to sing with others? You can search for ones in your area here: blf.org.uk/support-in-your-...