Breathlessness

[Myepisode]

I’m a year out of icu . I’m still breathless! My doc has given me asthma pumps and when I was really struggling I was given steroids. None of this works?!😢 I’ve not seen the doctor because of covid but it’s starting to really worry me now. I’m still in a lot of pain with my body too. At the end of a sentence Nothing comes out I’m so croaky and breathless .... help !

[FamilyHistorian]

Hi

I came out of hospital a year ago today. Nearly 2 months was spent sedated / ventilated.

I have been getting more and more breathless. I spoke to my GP in November and she sent me for a chest X-ray and when the results of that came back I was sent for a CAT scan. In my case my gp diagnosed pulmonary fibrosis. She said not cancer! The PF may have been caused by either all of ICU trauma / pneumonia / methotrexate (arthritis). I have now been referred to thoracic medicine and waiting for an appointment. In the meantime I have bought my self one of those finger oxygen testers.

It sounds as if your first step should be get an X-ray.

[Sepsur]

I’d get it checked out - I know why I’m breathless - a pleural effusion, blood cancer & Severe ARDS.

I’ve improved my mobility and breathing by doing a few ICUsteps Chester sessions on zoom.

icustepschester.org

[raydee39]

Good morning. I'm the same. I was in icu after a cardiac arrest and heart attack last May ending up with a tracheomtry after getting ventilator pneumonia.. My breathing has been getting steadily worse over the past 6 months to where im now breathless all the time,waking in the middle of the night gasping for air and unable to walk more than a few yards.

I too have been given several different inhalers and steroids but nothing works so far..I've been told I've got emphysema/ copd and that my lungs were scarred in icu and not to expect any great improvements and that medications are difficult to personalise taking a while to find the right combinations..

I would get in contact with your doctor and get a referral to your local chest clinic for spirometry and lung function tests to see if they can find a good combination of meds for you...

Hope you feel better soon

[micheve123]

Hi I have been out for 7 months now. I had pneumonia. I know where you are coming from with the body pain as I feel the same. I think its just time I'm hoping that I will get back to pre icu soon! I have copd and asthma so do get breathless so can't help on that front but I gave up smoking just before I went into hospital so have improved with breathing but Im also croaky sometimes when speaking. I had a feeding tube in and think its from that as I'm not great at taking tablets now🙈 they sometimes feel like they are stuck. Hopefully you will be able to get a face to face with your gp soon. I do feel better if I drink plenty of water in a day don't know if that would help you. Sorry not much help and hope you get sorted but hope it helps that you aren't alone. Take care and here's to a full recover 🙂

[Myepisode in reply to micheve123]

Aww Thankyou 🙏 I went in for surgery 15 mins into theatre I started wheezing my lungs collapsed pneumonia set in and I was in ventilator 10 days in for 3 weeks. It’s traumatic isn’t it?! I actually came out of hospital the day before lockdown started so haven't seen anyone apart from physio came to the house for a few weeks. My gp hasn’t a clue so I’ve self diagnosed a lot but I don’t think I’ve got asthma at all my X-ray was cleaR . But I wheeze and walk few steps and breathless. The pain is not as harsh as it was in the beginning But it’s still there are you tbe same with your pain?

[micheve123 in reply to Myepisode]

Hi your chest can be clear on x ray but still have asthma. Did you have a pneumonia nurse? I had one when I was discharged and spoke to them a few times. Pain wise still hurting on strong pain killers. Feel like I went into hospital one person and come out 20 years older 🙈. Still struggling coming down the stairs feel like I'm going to fall😂 Tears humour and husband getting me through it. Determined to get back to better than normal. Please keep speaking to your gp and get referred. I have been under a consultant for 10 years for my asthma and copd and he changed my inhalers. I've been lucky with gp and the hospital/icu aftercare. Please keep us updated xx

[Myepisode in reply to micheve123]

I feel I’ve aged too I don’t look the same.. I’m gonna see if if I can get to appt. I didn’t see anyone for the pneumonia just thrown out of hospital to dress my own wound for 10 weeks too. No one seems to know anything apart from this group which is such a help . Thankyou 🙏👌