Do I need a specialist

[rossie1942]

I have has asthma all my live but it is a nuisance rather than disabling. At beginning of January I had a chest infection that required two courses of steroids and antibiotics . Three weeks later I find that the slightest exertion makes me breathless. Does this happen after serious chest infection and will it improve. My GP is dismissive and said the nurse will test you for COPD as though COPD was nothing. I would appreciate any advice as to how people were diagnosed with copd. Was it a nurse or consultant and were many tests done before reaching the diagnosis. Could COPD come on so quickly. all advice very much appreciated. I am 75 years old and up to this January very fit walking five miles a day. thanks very much

[mrsmummy]

Hello rossie942. I was diagnosed by my GP then referred to a hospital consultant for confirmation.

[rossie1942 in reply to mrsmummy]

Thank you

[Dawnsunny]

I was the same with my asthma, but felt it was getting better as I got older (I’m 56) as I hardly ever needed my ventolin. Then I started getting a cough that didn’t go and chest infections where steroids and antibiotics were given .

They thought I had COPD but after spirometer testing at my GPS i was told I didn’t. Had a really bad illness and coughed up some blood and was finally referred to respiratory at the hospital. After a CT scan i was diagnosed with Bronchiectasis.

I do hope your ok x

[rossie1942 in reply to Dawnsunny]

Hi Dawnsunny Thanks very much for your advice and good wishes. Hope that you to are ok, so confusing and don't think GP has time to discuss the emotional impact on these diagnosis. So pleased to have found this site. thank you

[Hidden in reply to rossie1942]

I was diagnosed by GP who said Asthma. Had a CT scan at hospital, Bronchiectasis. Practice nurse said COPD, which was accepted by GP. Consultant wrote to my GP telling her I did NOT have COPD, but Bronchiectasis. It happens all too often. My new nurse practitioner made sure she learned everything about Bronchiectasis.

[rossie1942 in reply to Hidden]

Thanks very much poemsgalore1. Glad that you have a good consultant.

[Dawnsunny in reply to rossie1942]

I agree, I been so tearful since my diagnosis, was told last week I have to go on nebulised antibiotics feel so down would love someone to just sit with me, to take the time to explain and answer all the worries that are going around in my head and in a way I can understand. And if I need to ask the same questions over and over until it sinks in even better! So know exactly how you feel xx

[rossie1942 in reply to Dawnsunny]

Thanks Dawnsunny. The NHS posting on COPD says prepare for the end !!!. Such a relief to read on here that people have had COPD for 40 years and are apparently living reasonable lives. Every Good wish and thanks very much for support

[Hidden in reply to rossie1942]

The nhs website says the same for every progressive condition, usually right at the end under "End of Life Care", but it also emphasises that for many people these conditions can be controlled and you can live an almost normal life. A diagnosis like this takes getting used to, but make sure you don't just see the worst-case scenario and miss all the positive stuff

[rossie1942 in reply to Hidden]

Thanks Hanne62.

[janice01 in reply to rossie1942]

Rosie and Dawnsunny,

I was the same, asthma from teens then chest infection that wouldn't clear up.

Was under breathing specialist locally and took myself privately to Royal Brompton top infection man.

Was admitted on NHS for 10 days intravenous antibiotics and diagnosed with Bronchiectesis. That was 12yrs ago now. Still see him on NHS and was best £200 lve ever spent!

My point is that even local specialists can let you down. By the time Brompton admitted me my lungs were 80% not working.... with hard work and regular pulmonary rehab now have 32% working instead of instead of just 20%.

But, what a costly exercise, in terms of permanent lung damage that was....

Janice x x

[rossie1942 in reply to janice01]

Thanks Janice01. great consolation. Well done for working so hard to restore some lung function after neglect. How did you achieve the improvement. most grateful

[Mindy_]

I feel the sameness I have had asthma all my life and have had repeated infections and just lately after 3 consultants I got a ct scan done and he told me I have scarring on bottom of both lungs but nothing as to what has caused it, so still don’t have full answers 😩

[janice01 in reply to Mindy_]

The scaring often follows chest infections... lve been told had some in childhood... but have also been told they heal themselves as have been told after couple of years no scaring visable. Bit of a mystery to me, if honest but had scaring from pneumonia a few years ago and then told last year, no scaring visable... hope the same happens to you Mindy....

[rossie1942 in reply to Mindy_]

Thanks. so frustrating for you. hope you get an answer soon.

[Mindy_ in reply to rossie1942]

Thanks it’s frustrating the waiting

[janice01]

The longer between chest infections the quicker the lungs will recover - That's from Royal Brompton, Host Infection, top Professor....

I'm lucky to have him - he's lucky to have me as a patient too!

I jest but that's one of the ways we, as a family, have dealt with the seriousness of the situation....

Pulmonary Rehab has been a life line to me, after the 8wk intensive course, l attend a weekly rehab class with a pulmonary physio.... 1hr of exercise after a warm up stretch routine that concentrates on the lung improvements, opening chest muscles, breathing only through nose and if you can chat you are not working hard enough at it!

The theory behind it is that you find the balance of doing as much as you possibly can without resorting to mouth breathing or shoulder raising movement to get enough oxygen etc...

At the same time building up core strength to aid balance and respritry control to improve the overall quality of daily living... It's up to you if you practice at home but it will help if you do!

When l do get ill, always try to get the balance of rest to activity achieved, if very unwell I'll have to work harder to restore the situation and have tolerance with myself... lm my own biggest critic.

Also increase the postural drainage time spent on the sloping bed, may even sleep on it overnight. Not comfy as gives head rush and not as young as used to be...mid sixties.

Pace myself whilst in recovery, ie climb stairs, sit on bed til reps under 20 per minute, then continue... after a few weeks, have been known to trot up a flight of stairs, get what's wanted then back down again.

Yes, l work at it - and have good support from the family, very lucky to have that. But couple of times each year lm alone over a week to care from myself with just phone support. They more try to hold me back and keep safe, ie no climbing up garden rockery and no ladder climbing inside to do jobs around the house....

That's a rather lengthy explanation Rossie but if any one is to follow the same method it's essential to understand the effort put in both physically and mentally....

Best wishes to all... Janice x

[rossie1942 in reply to janice01]

Thanks very much janice01. Will ask GP for referral to Pul REhab. Your advice is most welcome thank you.

[poppylachat]

Hi Rossie Last January I had really bad cough went to Dr. got sent for chest xray and had spirograph done and told out of the blue that I had COPD complete shock to me as I had never smoked or worked with chemicals. I do a lot of walking and never get out breath climbing. Found it hard to accept that I had COPD that was in March. I even rang the BLF and spoke to nurse who thought it unlikely that I had COPD just from those test then in June I was really ill with chest infection saw a different Dr she gave me steroids and antibiotics and I questioned with her my previous COPD diagnosis she looked at my spirograph and spoke to Dr I had seen and nurse practitioner and it turns out I had late onset Asthma what a relief for me always worth getting more than one opinion.

[janice01 in reply to poppylachat]

I would second that poppylachat!

[rossie1942 in reply to poppylachat]

Hi poppylachat my situation is almost identical to yours. So pleased that you do not have COPD.I am taking advice from members on this forum and going to try and build my lungs up before accepting any diagnosis. Most grateful for your help.