New User to site

[bobgordon]

Hi Everyone,

My name is Bob, I am a 30 year old living in the UK (Essex) I have recently had multiple pneumothorax.

I was a smoker for 15+years and recently quit after spending 5 days in the hospital with a chest drain. I am now smoke-free but I wish this was the end; since this spontaneous full pneumothorax I am having shortness of breath constantly I can't even make a cup of tea without having to sit down for a while afterwards.

I have been told I have Emphysema, but I have not been given much detail around the condition and if there is anything I can do to slow down the progression, I am not sure what I should do next.

I have now been off work for 3+ weeks with another small pneumothorax happening over the weekend, I have been told not to take deep breaths (this doesn't really help with having panic attacks about it) I have not even been given a full diagnosis as of yet.

Any advice here would be greatly appreciated.

Best regards,

Bob

[Hidden]

Are you under a consultant? Or community respiratory nurse.

[bobgordon in reply to Hidden]

Hi, nothing at all, i have been in hospital twice with collapsed lungs (left and right) and discharged without a follow up both times, all I have is a follow-up x-ray next week, but no consultant, I was planning on going to my GP this week to ask for a referral.

[Hidden in reply to bobgordon]

A must do as soon as possible

[bobgordon in reply to Hidden]

Thanks for your quick responses, I have an appointment for Wednesday morning.

[Hidden in reply to bobgordon]

Ask insist on referral to a consultant

[bobgordon in reply to Hidden]

thanks for your help, I will ask for a referral.

[2greys in reply to bobgordon]

Yes you need to be referred to a hospital respiratory consultant asap via your GP.

[HungryHufflepuff]

Hi Bob, I hope someone starts to take care of your situation soon. It sounds like you’ve just been abandoned and telling you to not take deep breaths isn’t much of a follow up.

Maybe you could try phoning the British Lung Foundation, their number's on here somewhere, I’ll try to find it for you. I’ve never phoned them but several people here have done, BLF are glad to give help and advice.

Best wishes to you 🤞

[HungryHufflepuff in reply to HungryHufflepuff]

I found the phone number 03000 030 555 incase you want to phone them.

[Corin1950]

Hi Bob

Welcome to the site.

As you are young and recently been told you have emphysema you may be interested in a reply I just wrote in response to Emily61’s post called Breakthrough it a few posts above yours.

It’s about slowing the progression of lung disease if you’re mild/ moderate.

Hope you can find it and sending you best wishes.

Keep posting

Corin

[bobgordon in reply to Corin1950]

Hi, thanks for this I have just read your comment, unfortunately I hit quite a lot of your points.

I do have age on my side acording to what I have already read, I had severe asthma as a child, but this stopped when I started smoking (strange I know) I'm very skinny and always have been I eat well and a lot but just can't put on weight, I'm constantly around 8 stone being 5ft 7 i am underweight.

I have had two pneumothorax in the last 3 weeks, one full total collapse of my left lung and a smaller right lung a week after the first.

I haven't had any diagnosis all comments have been made off the cuf in hospital from doctors / nurses etc during my stays, but they don't ever follow it up with a consultation with an expert ( I would have thought it's better to catch it early and not just leave it)

Has you husband had a few collapses?

Bob

[Corin1950 in reply to bobgordon]

No he hasn’t had any. It sounds to be that you need a CT scan to find out if you have emphysema. Don’t worry about your weight if you eat well. You probably have a fast metabolism.

[bobgordon in reply to Corin1950]

Ok I have been wondering, how they came up with emphysema, I had a CT on my first visit.

I'm going to my GP tomorrow to get some advice and hopefully a referral, I've heard inhalers are good at keeping the breathing at bay.

[Alostrael in reply to bobgordon]

Hi Bob, welcome to the group. I was undiagnosed until I had an exacerbation, couldn't get a gp appointment, so husband drove me to the hub. The doctor there was surprised I had not been sent to hospital for a chest x-ray. She contacted my surgery and I got treated right away. Put on salbutamol inhaler and spiriva respimat to try to slow the progression of it. Good luck x

[bobgordon in reply to Alostrael]

Unfortunately I am still not anywhere, infant I seem to be going backwards, I will try and post a full update in the next couple of days, but what is the hub ?

[Alostrael in reply to bobgordon]

The Hub is an emergency centre where you can go if you cannot get an appointment with your GP, or, in my case, they're simply not answering the phone! The phone number is 111.

[Izb1]

Hi Bob and welcome to the site. I cant advise on your problems but would suggest you have an urgent referral via your gp. It seems to be a common complaint that once treated you seem to be dumped with no information and are left in no mans land, its horrid. I wish you all the best and hope you can get to see a specialist that can help you. Irene x

[Dedalus]

You have some good advice above Bob; you have the right to see consultant, and definitely need to see one, so hope your GP gets you a quick referral. Would just like to say hello and welcome to this site, which you will find so helpful.