Earlier this month I braved my first run since my pneumothorax back in January. Unsurprisingly it was considerably slower and more difficult than immediately prior to the collapse but it felt great to be back out there again.
Psychologically it's a huge lift as it's a sign that I'm getting stronger again and I certainly feeling more confident. However, I'm mindful of the fact that I need to go slow and may not return to my previous levels such is the nature of my particular lung condition.
I was given a timely reminder yesterday of the fact that I'm far from fully recovered by the fact that I had to book an epic train journey for my friend's wedding in the south of France as I'm still considered a flight risk due to the pressure difference.
Overall, I'm feeling in a much better place than I was in the middle of the pneumothorax scare back in January but I've got more pressing challenges ahead starting with my initial consultation with the lung transplant consultation team next month.
Has anyone on here had a lung transplant or had one of these consultations? It's a whole day of tests and discussions and it would be useful to talk to someone about what I'm letting myself in for.
Hope everyone's as well as they can be and thanks in advance for all your support.
Written by
dodgylungrunner
British Lung Foundation
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Hello again. Quite a few of us have had the consultation and tests. Some have progressed to the actual transplant stage. I hope they turn up to share their experiences with you.
Good to hear from you agai;n, and it all sounds positive. Well done you. There are people on here on the transplant list, and I am sure they will respond with advice and support.
Look at Youuu!! So pleased with your self. And so you should be. Well done! Dont be over doing it though. N I don't know anything about lung transplants but i do wish you the very best of luck with it. 🚴😊🌻✌️
Don't worry, I'm taking it slow as the last thing I want is another pneumothorax and potential chest drain. The lung transplant consultation is only the initial appointment to get me on the system and check my suitability. Quite when the transplant would be (if possible) is uncertain and could be someway off yet.
Hi good luck next month and fingers crossed it all goes well for you.I too have had spontaneous pneumothorax i had 2 in the space of a few months and had the dreaded chest drains these are worse and more painful then the pneumothorax itself.Let us know what happens next month.
Thanks Tavymaid! I'll certainly keep you posted. Sorry to hear about your own issues with pneumothoraxes. Agree completely on the chest drains which aren't pleasant at all. Really hope you're on the mend now and wish you all the best going forwards.
Thanks for your kind words after the 2nd pneumothorax i had to have a pleurectomy so far it,s worked and no more flat lungs!! Wishing you all the best also, i,ll look out for your post next month and really hope it,s good news.
Glad to hear that the pleurectomy has worked so far. That was something that was discussed for me if the lung didn't stay inflated which thankfully it has so far. Wishing you all the best as you continue your own recovery. Together we are stronger than lung disease.
So sorry that I've only got a few mins to say a HUGE congrats for getting through your illness/hospitalisation and yet being able to do your first run again,already! I'm unable to give any first hand experience regarding transplants but I'm sure a member will be along soon,replying to you. Also good luck with your train to France and friends wedding. Can we expect any photos then?
Thanks SquirrelsHolt! Great to have the support of you and others - feels like a bit of an extended family. Got a way to go yet on the recovery from the pneumothorax and know that in the long run my lungs will continue to deteriorate however it will be nice to have some fun and challenge them while I can. Will certainly send photos from the France adventure if they're of interest to people. Hope you're well and thanks again for taking the time to read my post and send a reply
Oh believe me its always great to have a new member with your outlook. Its very easy to just accept our illnesses,take our meds and that's it. So your planned French trip will be good for your spirit and wellbeing. I'm stupid enough to have fallen over and I'm hoping just badly sprained my ankle....it is like two feet with huge purple & black bruises! I dont know,I get to my 56th year and go and fall over on my doorstep!! Typical. So 3 days with iced,elevated foot and we'll see how it goes from there.
Yes, the Chest drains are pretty painful. My Old Mum had to have one. Best of luck. Both with the health issues (you look very young to be having all these problems), and with the Fitness. 😊🌻✌️ Dee
Yep! That's young. 😀 N you don't even look that! 27 i thought. 😊🌻✌️
Hi I can only tell you my experience ... I was referred by my gp to see if I would be suitable for a double lung transplant.. it took a while to hear from them but I got an appointment and off I went family in tow . .it was on that 1st meeting that reality kicked in and all my emotions that I thought I was coping with came out as the physician told me straight the reality of my situation ... that 1st app was just a meet and greet really but did tell me they would bring me back further down the line for a 3 day assessment and would be staying on the ward on them 3 days whilst that do every kind of test possible ..phyciatrists talk to you..bloodtests are taken ,teeth xrayed and bone density tests to say but a few and then on the 3rd day you meet the doc who will be doing your surgery if you qualify ...that's when they tell you to take someone in the room to take notes as you are given lots of information..on the 1st meet and greet app they took a urine sample only then they contacted me with an app for my 3 day assessment which was a further 6 weeks away .I never returned for my 3 day Ass as think I mentioned b4 I'm not in a good place to go forward at present and you need to be strong mentally b4 they will even consider me ..sorry that was alot to type ha...Also I need to complete a full PR course..Another thing on my 1st meet and greet the physician watched me get wheeled into his room by my family as it is much easier when we go anywhere to be pushed as walking would take hours to get from the car park to the unit anyway he seen that and told me he deliberately watches patients walking in to see how fit they are that determines his opinions on my current physical state which is a double edged sword as on 1 hand I need transplant cos I'm so unfit but on the other they won't do a transplant til your fit enough so to speak ...there are a good few on here who are live on the list and also people who where relieved to be told they are not able to go on the list .... hope that explains a little ..take care 😉
My goodness Kemety, it sounds like so much more than I first appreciated - thanks so much for the heads up. Sounds like you're in a real catch 22 situation in regard to the transplant. All you can do is your best so literally take the exercise step by step. It never ceases to amaze me what the human body can achieve even in the most trying of circumstances with the right level of determination and hard work. Easier said than done of course.
Well done for getting back to running. Any exercise will help you with your lung function.
Absolutely Jo! Cardio is obviously good but it's important I also strengthen my leg muscles to make them more efficient according to the physio - especially my quads!
Hope you're well and had a good weekend? Thanks so much for all your support.
Yes I'm well thanks. I had a pulmonary embolism back in December and I have found that exercise is very helpful in increasing lung function and I recently had an appointment with the consultant at the respiratory clinic and they did a lung function test there and they were fine so he discharged me from the clinic and I will see my gp if I need anything from now on as I am staying on anticoagulants as I asked to as they are like having a security blanket but I am also doing everything I can to help myself like walking when I can and moving around every hour or so at my sedentary job which I felt caused me to have the clot and I have also lost nearly 3 stone since December as well as I used the incident as an opportunity to make positive lifestyle changes and a wake up call.
Definitely get back into running but take it at a steady pace I can't run but I walk miles with my dog and horse ride which believe it or not is bloody hard work. im in my early 40s being put on the lung transplant list, I try not to think about it, when the time comes I don't no what I will decide xx
Absolutely Tracy. Trying to push it too hard is what made my underlying pneumothorax a bigger pneumothorax that required a drain in the first place so I've learnt my lesson! In my defence I didn't know I had an underlying pneumothorax at the time....
I can believe horse riding is hard work. I've only done it twice in my life and both times have been eventful! The second time I made out that I knew what I was doing to impress a then girlfriend in Thailand. She took her horse to the gallop along the beach and I had absolutely no control of mine so it followed suit. I just about stayed on but it was seat of my pants stuff quite literally and I was clinging on for dear life. Breathless after and a real rush!
I'm trying not to think about the transplant list too much either and live for the moment. Easier said than done at times but I'm doing my best. I'm not actually on the list yet but if I do pass the threshold then, like you, I don't know what I will do in due course as the risks are so high as you know only too well.
I try not to think about it either, I'm just taking it one day at a time trying to be as active as possible, I make myself go out walking three or four times a day, try and eat better, I'm not working at min, I don't no if I could manage a full time job and if I did work it's what to do, office jobs there's always colds and germs and we have to be so careful we don't get chest infections, it's a nightmare. I think sometimes I'm in denial about the future but if I sit and think it does terrify me xx
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