Thanks for help

[Silver252]

Hi All

Just to say thank you once again for your help and support it meant a lot. I have had a few day to think about what the Doctor at A&E said and his subsiqent referral to chest specialist. I’m think that they suspect COPD.

I have been Asthma from aged of 2yrs, had measles and spent 2 months in hospital with chest complications which resulted in being Asthmatic ( now (57). I have a compromised immune system as I have had Rheumatoid Arthritis for the last 12 years. In 2012 I suffered with bilateral Pulmonary Embolisms which were very serious lucky to survive, the blood clots caused scarring to left lung. I have had to sleep sitting up since then as I couldn’t breathe if I lay down. My chest was never the same after this and I notice I got exhausted so easily. 2 years after that I got pneumonia took ages to recover. Then 22 months later I was rushed into hospital with pneumonia and sepsis I was so ill.

I have never recovered from that which was 15 months ago, chest tight in the morning and I have mucus and a bit of wheezing and I notice being breathless even on slight inclines. The utter exhaustion and weakness is the worst thing. When I went to follow up appointment at the chest clinic, I did the spiro tests and one I just couldn’t do because I didn’t have the breath, the technician wrote on the report that “ I couldn’t follow the instructions to do the test” I told the consultant that I fully understand the instructions I just didn’t have the breath to do it. He just ignored that and said we don’t need to see you again.

Well after this latest 5 week chest problem and hospital visit they have now pick up that it wasn’t Just Asthma aggravated by infection and that they suspect some other lung problem.

Am I being unreasonable but my thinking is all this should have been picked up by the medical professionals before now, I can’t help thinking I’ve been let down. I would love your thought and opinions and how your own COPD was diagnosed. Just wanted to add that I have never smoked but I understand that non smokers can still get COPD.

[Hidden]

Your history of asthma, measles, infections and pneumonia points heavily towards bronchiectasis. This can develop from lifelong asthma and for a non smoker, more likely than copd.

Look for a consultant in your area who specialises in bronch. They will also be able to diagnose and treat copd but a general respiratory consultant is not trained sufficiently to deal with bronch properly. The specialists in bronch are usually at big teaching hospitals.

Take the name to your GP and INSIST on a referral. Do not take no for an answer.

They have been messing about and tinkering around the edges with you for far too long. This is your health at stake and time that you demanded proper diagnosis and treatment.

I’m afraid that we have to be very pro active in our own interests and vociferous in sourcing the right care. Good luck. You can feel better than this!

[hypercat54 in reply to Hidden]

'Vociferous' love it. This is my word of the day x

[cofdrop-UK]

Absolutely agree wiith littlepom. Measles, RA, and pneumonias and the numerous infections you have experienced would suggest bronchiectasis as a strong possibility. Please take LP’s advice and find a resp consultant with a special interest in cf/bronchiectasis and ‘request’ referral. It is a problem when someone has a dx of one condition (in your case asthma) for the medics to put everything down to that.

At least now they are now thinking outside the box and I hope you have a ct scan when you see your consultant to get a proper dx and treatment.

Please let us know how you get on.

Love cx

[Whitechinchilla]

The good news is that they have identified “ something” other than asthma. Hopefully it will get better from here on.It’s very unsettling to feel you have not been given the best treatment but I wish you well. Do please let us know if you find a consultant as recommended here and what the outcome is.