8 years and counting

[Thebraveone]

I have Copd and asthma I think. One spirometre test with a bad result has given me this diagnosis. I have just got a bad chest infection again and have had it a month. First gave myself my antibiotics I keep at home to no avail. Dr prescribed a different one the following week to no avail. Now I have been put on TWO stronger ones and more steroids. I have no consultan, just my Drs and respitory nurse.

I have found a pulmonary consultant in London who has agreed to see me, probably privately. I am hoping for a blood test, scan etc and to get a proper diagnosis. My SATS normally range from 90-92 at rest but can drop to 84 with little exercise or stairs. I am 66 and feel life is passing me by. Has anyone been in the same boat as me. Just piles of pills and asthma pumps which get changed if not working. Fed up

[Tree20862]

There are enough asthma meds out there that sometimes you need to find the one that works best for you. As far as chest infections, the lungs take 6 weeks to heal and can be easily triggered during recovery.

Hopefully the lung guy can find your path to feeling good.

[Hidden]

There is no need for you to pay privately for a respiratory consultant and the relevant tests. The same consultant probably also works in the NHS. Your GP is obviously not handling your condition successfully. Go to see them and get them to refer you to the respiratory department of a large teaching hospital. If you can find a consultant there on the internet all the better. Do not take no for an answer. It is your right.

[Whitechinchilla in reply to Hidden]

Thanks for your post littlepom. I hope you don’t mind my intrusion in replying to you but I am in a very similar situation and am tired of my gp blocking every question I pose.

I’m far from timid, believe me, but sitting across from my gp I find myself unable to connect so yes I too must find another gp.

I had 6 flare ups in 2018 and in Jan I went to see him because I cannot have another year like that and he told me that was normal for some one with mild COPD. He refused a blood test, X-ray, scan and sputum sample. He wouldnt even acknowledge the BLF handbook and NICE guidelines that I showed him and said he didn’t have to follow them!

Are you saying that I can just request a referral and he must comply?

Sorry to bombard you but I don’t know how to get the answers to my ?s

and cannot afford private treatment. Many thanks for reading my drama.

[Hidden in reply to Whitechinchilla]

he isn’t managing your condition to your satisfaction. I don’t have copd but I am pretty sure that those who do will tell you that 6 flare ups requiring antibiotics in a year needs looking at. Have you had a proper diagnosis or just spirometry tests in the surgery? To my mind this GP is failing in his duty of care towards you. Why does he think that respiratory departments in hospitals exist?

Look on the internet for a good respiratory consultant in your area. Go to the GP armed with the name and insist on a referral. Yes it is your right and the GP is there to facilitate it. I do wonder why he is doing the job if he is so complacent and uncaring.

If need be, find out if there is another GP in the practice who is more cooperative.

I’m afraid that with lung conditions we do have to be pro active and vociferous in our own interests. It’s hard. Good luck

[Hidden in reply to Whitechinchilla]

And yes, the guidelines are there to be followed and how arrogant is he to consider that he can ignore them! If he continues to be obstructive begin the complaints procedure with the practice manager.

[Whitechinchilla in reply to Hidden]

Thank you for your time in replying. I have only had annual Spirometry tests done by the nurse and then I research to make some sense of the numbers and then see the gp.,

My conclusion is he does not know any more than I do.

He is after all a g.p. Not a long specialist.

I just was not aware of my boundaries in requesting a consultant referral. I feel more confident after your comments and will make an appt with another gp later in the month.

The conclusion I came to was that he just saw an old lady sitting in front of him who is overy compliant when with her gp. Either that or the practice has no budget for referrals.

Definitely time for a change.

Sincerest thanks.

[Hidden in reply to Whitechinchilla]

Make it the old lady in purple with a red hat who knows what she wants and doesn’t give a fig what people think of her. Kick the hornet’s nest and wake them all up! It’s your health at stake here not the GPs. You haven’t even had a proper diagnosis that it is copd. It’s disgraceful. Go for it girl.

[Whitechinchilla in reply to Hidden]

That’s the real me......wearing a marigold in my hat and ringing my bicycle bell to frighten old ladies😂

Thanks for the reminder😄and the much needed kick up the proverbial😄

[Whitechinchilla in reply to Hidden]

Lung not long😂

[BS-ZIG]

I was in your same shoes a year ago, then last May I was lucky enough to be accepted into a lung study. “Last resort”. The first day I went they gave me a CT scan. They then called me an hour later and told me I needed to go to a Cardiologist immediately. So I did. It turned out I had Aortic Stenosis and I needed surgery. Wow that was good news at that point. I knew I had a chance and maybe could be fixed. I was really peeved that for years it never was my COPD, Asthma, etc. It was my heart. I had the surgery and they replaced my valve. I ended up in ICU for 11 days. It was the hardest thing ever in my life. Fast forward 8 months. I can now breathe, walk a distance, no longer need oxygen. My lung problems are now over. So just to let you all know, it is not always as it seems. If your heart cannot pump blood, then your lungs are not getting enough oxygen.

It least it was for myself. I hope this might help someone!

[Dragonmum]

I have never been referred to a respiratory consultant, though I was diagnosed with asthma in 2002, right after my husband's funeral. Over the years this morphed into COPD and asthma - how or why I have no idea; COPD is a degenerative condition and I didn't degenerate, in fact my condition improved every year. I recently developed a cardiac problem and demanded a private referral immediately, my doctor's response was "Don't you trust us?" - short answer to that is "No". When I saw the cardiologist he said I had been referred as a "Mild Asthmatic". I'm glad I attended the practice's asthma clinic as that is where they picked up on the BP and heart rate which was too high for a spirometry but I feel that COPD is now a blanket term for just about everything and is certainly the poor relation in terms of treatment.