British Lung Foundation
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Pneumothorax scare

Pneumothorax scare

It's safe to say that 2018 hasn't exactly started according to plan!

Less than a week after my big appointment and tests with my team at the Brompton I had to take myself to A&E after suffering acute chest pain and slightly increased breathless after a work out at the gym.

X-rays revealed a rather sizeable pneumothorax in my right lung which the team at St. George's wanted to treat with a chest drain immediately. However my treatment team at the Brompton were, rightly, more weary of putting a drain in for fear that it might result in infection or aggravate my underlying lung disease.

The result was a hasty admission to St. George's for overnight observations ahead of a follow up a follow up X-ray the following morning which revealed that the pneumothorax hadn't got any smaller but importantly hadn't increased either. As a result I was allowed to go home and told to come back the following week for another X-ray to see if the unwanted air between the pleura and the lung was making its own way out.

To add to all the confusion and uncertainty it turns out that the Brompton were already aware of the fact that I had an underlying pneumothorax from the chest CT scan that they had run on the previous Friday! Unfortunately they neglected to tell me about it or the importance of avoiding doing any exercise and exacerbating the situation.

The evening after my initial discharge from St. George's I got a call from a member of the team at the Brompton to check in on how I was and what St. George's treatment plan was. The registrar was also at pains to 'apologise for any misunderstanding' regarding the pneumothorax however there was no misunderstanding - they just didn't tell me!

I found it hard not to feel a little angry and upset as the whole situation could have been avoided. It was also hard to stomach the news that the lung might not fully re-inflate and if it did I would now be more prone to further pneumothoraxes in the same area.

However, I'm not one for holding grudges either and having voiced my frustrations and disappointment I turned my attention towards doing what I could to rest up over the weekend in a bid to do what I could to make sure that the pneumothorax sorted itself out.

Last Monday I then got another call from the Brompton who having reviewed the X-rays from St. George's wanted me to come in so they could make their own assessment on the Wednesday. Another X-ray and CT scan later confirmed that the pneumothorax was actually getting even bigger and the decision was made to have the chest drain put in after all.

I'm not sure if any of you have had a chest drain inserted before but the process isn't the most pleasant one and isn't helped by the fact that you are conscious throughout. However it was a necessary evil and over the course of the next couple of days the air pocket did begin to pass and the lung started to re-inflate.

By Friday they were confident enough from further X-rays that the pneumothorax had gone and the lung re-inflated and the drain was removed. After another positive X-ray after a night under observations without the drain I was finally able to go home a bit battered and bruised on Saturday.

It's a huge relief to be out and on the road to recovery but I know many more difficult challenges lie ahead - not least the prospect of a lung transplant in the next 5 years as now seems likely based on the current rate of decline in my lung function test scores.

That's a scary prospect that I certainly hadn't envisaged being quite so soon. Certainly this wasn't how the team at the Brompton had been presenting things or indeed would have continued to present things had I not pushed them for some sort of prognosis.

I fully appreciate that a lot can happen in 5 years and that there are many factors at play that making a prognosis almost impossible but it's good to have a ball park figure as it gives me something to work with and will help me plan going forwards.

I appreciate that not everyone wants to know and that doctors often don't want to give you the bigger picture as they don't worry you but I'm one of those people who does want to know exactly what they're up against and whilst scared I actually feel a little relieved that I have an inkling of what lies in wait.

Out of curiosity I'd be interested if anyone else was similar in outlook and also had to push to get more honest answers out of their treatment teams?

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What is your history. Why is it progressing. I'm trying to understand why in some people it progresses faster.. so I you take medication?

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Hi Karen. I had chronic myeloid leukaemia when I was younger and ended up having a stem cell transplant from an unrelated donor back in 2004. I had no obvious Graft Versus Host Disease and was doing really well - I even ran from John O'Groats to Land's End in 2011!

Prior to that run I had a chest CT scan as part of checks to make sure that I was fit enough to do the run which revealed that my lungs were absolutely fine but three years later I was diagnosed with a condition called IPPFE (Idiopathic pleuroparenchymal fibroelastosis) and had lost almost a third of my lung capacity - quite a drop in just three years.

I've been on prednisolone ever since and that has slowed the rate of progression down from about 10% a year before I was diagnosed to 2-3% a year but they've not found a way to stop it and aren't entirely sure what's caused it either. All a bit of a mystery!

Certainly not what I was expecting at the age of 33 but based on the current rate of progression as indicated by the lung function test results I'll be approaching transplant territory in 5 years or so time.

I have another big meeting with my treatment team and consultant where we will talk about options going forwards. I remain hopeful that we can further slow the disease down and by myself some more time before I have to face the transplant.

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Hi dodgylungrunner, what a fab picture haha, made me smile. My word you've been through a lot, I hope your feeling a lot better now? I have to agree with you, I like to know exactly what's what, that way fend or please, you can move on. I do think your very brave, take care ✋️😊

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Feeling a lot better now thanks Stumpy and looking forward to getting back to work on Monday - I've not been in for 10 days now! I'm glad that I'm not the only one that wants to know what's going on. I was beginning to think it was be being difficult!!!

I find that I have to really push to get any kind of answers from the treatment team and that I'm also doing all the running when it comes to talking about possible other options to try which is really frustrating!

Hope all's well with you and thanks for reading my post and all your support :)

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So pleased that you are feeling a lot better now dodgylungrunner, that's nice to hear plus you've been through so much. Yes it's always nice to get back home, no place like it. Look after yourself dodgy,✋️😊

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I just want to wish you well after all your tooing and froing and I’m with you in wanting to know what I’m up against.

Take care and love the photo. Xxxx

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Thanks Sassy59! Really glad to be home and feeling so much better now that the drain is out and the lung has fully re-inflated.

Glad I'm not the only one who wants to know what lies ahead and be part of the treatment decisions - I was beginning to think it was me just being difficult at one stage!

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Hello DodgyLR, I went back to look at your previous posts. Sorry to have missed them first time round. And as for wanting to know everything, I absolutely agree. At RBH in November I asked my consultant if we could talk about prognosis, and she said “Yes.” So I said “This is getting worse, and there is very little to stop it deteriorating.” She nodded. So I said: “It’s going to kill me?” And she looked a little startled and after a nano second said. “Yes.” It was a massive relief. I have lived with this for eight years, and have noted, obviously, the gradual decline. I know what the outcome will be. And it was so refreshing to meet a doctor who wasn’t trying to fob me off with reassuring noises. She qualified it by saying the timescale was uncertain, well I knew that. And I knew that there would be no specifics. Her confirmation was very helpful and did not make me feel down, depressed or despairing. Am I weird? Seems I have found someone who shares the same viewpoint.

All the best

Kate

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Kate, thank you so, so much for getting in touch and being so open and honest about your own experiences. Very sorry to hear that your condition cannot be stopped either but hope they find ways to slow down it's progression further. Would you also be considered for lung transplant at some juncture or is that not something on the table at this stage?

Completely agree about feeling relieved. That's exactly how I felt after being fobbed off for so long and I definitely think it's the uncertainty that is the hardest thing to get your head round.

Now that I know what I'm up against and a rough time line I can plan accordingly and get myself in line to fight this with all I've got.

Stay in touch and thanks again for replying :)

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As for lung transplant I am too old, (71) and not ill enough. It would be a tricky one if I were suitable as the condition I have, Obliterative Bronchiolitis, can develop in transplanted lungs anyway. It is a fibrotic condition, presents as an obstructive rather than arestrictive lung disease but in a way it is like PF.

Definitely stay in touch. Can I adopt you as a kind of surrogate grandson? I am passionate about all lung diseases. The rarer the better, and yours is off the scale rare. Rare diseases are known as Zebras, hence my avatar. You have a Zebra 🦓 crossed with a unicorn 🦄

All the best

Granny Kate xxx

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P.S. just looked at your age, you would (just) qualify as a son, but I like being a Granny.

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Hello dodgylungrunner .

I'm afraid I have no pearls of wisdom in the subject of pneumothorax, but I just wanted to say I hope you are feeling a bit better now. Please take things easy.

Sending best wishes,

Cas xx 🌻

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Thanks Caspiana! Feeling SO SO much better now and really looking forward to getting back to work next week. Hope you're well and thanks so much for all your support. It's great to be part of such a supportive community.

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😊👍🍀😁

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Hi Dodgylungrunner. You've had a really rough time. I hope things start improving for you, now that you've weathered to storm. xx

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Thanks Casper! Definitely on the mend from the pneumothorax so fingers crossed I've weathered this particular storm. Plenty more challenges ahead of course but I'll tackle those as and when they present themselves.

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Oh yes forgot to mention my lung disease is also progressive and have been for 1st meeting regarding transplant which if you like straight talking say no more he was brutally honest but in a scare mongerish way and that really upset me ...anyway I'm currently undecided on transplant so have took myself off the appointments list for 3 day assessment until I'm mentally strong enough to go forward as at mo just haven't been thinking str8 and u need to be focused or they won't offer one .. phyciatrist needs to know you are mentally strong enough etc plus until I complete a full OR class I am also not fit enough ..there is all kinds of factors ...but it's been very very stressful let me tell you x😊.

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PR class sorry that meant to say ..

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