u/fingers121

I (M20, 6'2, 70kg) recently last week was hospitalised for a small apical pneumothorax. I was observed overnight then the doctor made me do a few quick tests, then when I was discharged I then found out I had been referred to a genetics clinic to test for marfan syndrome (although 9-12mo waiting time).

since I have been doing my research and realised I fit a lot of the Ghent criteria (scoring 7 just with the things I can test for at home).

As for the chest clicking noise, I began hearing it way before the PSP, however afterwards it became a lot more prominent (maybe because I am more fixated on my chest) and is a sort of crackling popping sound which follows the rhythm of heart. it can vary and I mostly notice when I am in bed, getting worse as I move onto my left side. I have researched a bit and have found out about something called Mitral Valve Prolapse clicking - which apparently is more common in people with marfan due to the differences in connecting tissue.

I am going for a checkup for the PSP tomorrow and am going to ask for an echocardiogram, partly due to the clicking and partly due to the wait times for the genetics clinic, although I'm not sure they will allow me.

Has anybody had a similar experience or any advice for me? from what I look up I can't find much about the possible MVP clicking noise so if anybody is knowledgeable in that field it would be great.

Also with the echocardiogram, if the respiratory team don't refer me to get one does this sound serious enough to explore other avenues of getting one?

I attached a video of the clicking noise - use headphones or turn volume up. it varies in intensity this is probably somewhere in the middle.

https://reddit.com/link/1ufovhb/video/doy0x0uuai9h1/player

For reference I (M20) am very tall and thin, had a primary apical pneumothorax last week (only small, was sent home with no intervention) but I am wondering about information for recurrence as I was not really told anything after leaving other than stop smoking (probably due to the state of the NHS at the moment).

previously I had swapped between cigarettes and vaping for about 5 years, smoking weed throughout. the number one piece of information the doctors gave me was stop smoking, however the radiologist told me that they just blame it on smoking to scare me and in reality it is just because of my body type. I am happy to quit the vaping and smoking but in reality will a spliff every now and then cause real issues? Are drunken cigs something I should really take seriously?

I have also heard a lot of mixed things about recurrence and am coming to think it is just a case of nobody knows, if it happens it happens. am I right in thinking this? I was spoken to by 3 doctors but they all made the conversation very quick and didn't really walk through anything but I feel like this is a life changing thing to happen. I have had to educate myself online which is saying I shouldn't go gym or run ect for a while but find it weird doctors didn't say this, however as I said before I think doctors in the NHS just don't have time for a chat.

Just asking if anyone has any advice who has been through this or more (recurrence) and can walk me through how my life may change, what I should know about, what to expect for recurrence, how likely recurrence is, biggest risk factors ect.

I also get this chest popping noise, is this normal? its not painful but I feel it and it is a weird crackling popping sound with the rhythm of my heart.

I know it is a very nuanced topic so I don't really expect to get definite answers but if anyone can give some more info that would be greatly appreciated.