Getting the best treatment now.

[SusieQs]

I was diagnosed 8 years ago with copd and was prescribed salbutamol and atrovent. I struggled with my breathing and on more than one ocassion I have asked my doctor if there was any other medicine that might make a difference and he always maintained that I was on the right medication for my condition. Whatever I know about copd was because I had read about it or through internet searches. I had one spirometery test at my doctors when I was first diagnosed and had to go once a year to see the nurse when I just had to blow into a hand held device which invariably didn`t work properly and couldnt get an accurate reading. I was never offered any advice. However when I was hospitalised a few months ago with pneumonia I am now under the care of them. I can really say that I am being really looked after now, I see their respiratory nurse and consultant regularly and will soon be going on the PR course. I feel that they care about my health and they are trying to help me. I have been to hospital this morning and had lots of breathing tests to see what effect the meds I am now have on my breathing.

I just wish that my doctor had sent me to see a consultant earlier and that it took until I had life threatening pneumonia to be able to know that now I am getting the best professional help.

Sue x

[chellshock]

Glad to hear you are now getting the treatment you deserve xx

[scrobbitty]

Sadly we can't turn back the clock but just go forward - now at least you have a great medical team behind you to make sure the future is as good as possible. That's a positive.

[phillips1]

Hi Susie

This morning I went to my 6th (of 16) PR session. It is making me physically stronger, my breathing is better and is also very informative. I am sure you will enjoy it when you get onto one. Good luck with yours.

Bobby xx

[Hidden]

So glad,you are getting the treatment you deserve.

I am sure the PR course,will be a great benefit,enjoy it.

Love Wendells xxx

[libby7827]

Hi Sue, sadly, this is not an unfamiliar story, I was quite shocked when I first joined the forum to read how many people are diagnosed at the gp's (who are frequently woefully ignorant about emphysema), given a Ventolin inhaler and sent on their merry way. Luckily for me I've always had great treatment, first time I saw the gp about my breathing they arranged for an appointment at the hospital lung clinic so had the right treatment and drugs from the word go. I used to go to the hospital every 6 months, then it changed to yearly and now it's back to six monthly. Glad you're now getting the tests/treatment you need, onwards and upwards! Good luck with the PR. Libby

[Hidden in reply to libby7827]

This is how it should be Libby. The GP should really request a Respiratory Consultant to see the patient if there is any possibility of something like COPD. The hospital is much better equipped to give the necessary tests, X-rays etc to confirm diagnosis. I am afraid a GP is unable to do this.

I would advise any new member who hasn't yet seen a Respiratory Consultant to ask their GP to refer them to one. Actually, you can pick and choose your hospital and Consultant.

I was seeing one Consultant for a good number of years (about 12 years) but became very unhappy with him and asked to change hospital and requested a particular Consultant. Best thing I ever did.

[Hidden]

I know the feeling, I was diagnosed with COPD 7 years ago and was only sent to the pulmonary consultant 3 months ago.

Probably comes down to the cost to the national health or medicare.

Theres an awful lot of people who have, or are being diagnosed with the disease every year.

I did read some statistics on it somewhere, and it shocked me.

Oh well at least we are not alone. Keith

[Lynne1955]

That is good news indeed. I am lucky as my GP is also a specialist in the field and divides his time between the practice and the hospital. He has a dedicated respiratory nurse at the surgery and most equipment for full testing so I only have to go to the hospital for X rays etc.

I have annual checks at the surgery.

Lynne xx

[peege]

I'm so glad for you, along time to wait. Grrr, an all too familiar story.

If you had your time over could you have done anything else? Would you have been able to change GP?

I only ask in case any new people are looking in. I know many people read BLF posts for a long time before they take the plunge - or not.

I have a similar story and was a bit passive in that I wasn't proactive in helping myself until I found this site.

Last week I refused to see an unhelpful consultant & saw a registrar instead. She immediately organised a CT scan so I can get a diagnosis.

I'd also got copies of my medical notes (for dates of pneumonias, infections, drugs etc to show the hospital. I'd been asked to prove I'd been ill by cons grrrrrr). In the notes I found that copd had been written years ago. No-one told me!

Now I'm getting the right help and I also started PR at the same time as Bobby. Done 6 of 12, dreading the end but it has been marvellous. Having once been quite fit, 3 weeks ago I puffed my way round their walk. Yesterday I covered quite a distance and part of it was a gentle jog and without use of blue inhaler too!!!! I've learnt so much more. Mind you, I'm quite well right now.

I've learnt that I'd been taking my Seretide inhaler wrongly. How could that have happened. There are different ways to use the various inhalers/puffers/powders/spacers.

I too asked my GP (young, modern, up to date) if my inhaler was working for me because I'd been getting progressively worse. He said that wouldn't happen. Months went by & at flu jabappt I told the nurse and she changed me straight off to Seretide.

Now that I've discovered I took the inhaler wrongly I've cut myself down to half the dose (250 down to 125), so far so good. I'll double it if I feeel dodgy.

Good luck with your PR, you will find it very beneficial. xxx peeg

[SusieQs in reply to peege]

Hi Pegg. Thanks for your reply. When I was first diagnosed I was naive and didnt know hardly anything about copd and I didn`t talk about it to anyone because I had been stupid enough to smoke for years. Also the little I did know was that only really old people got it because the were old, so why would I admit to that. I worked full time and plodded on at work, I was very concsientious and dragged myself to work through thick and thin. It was a struggle tho and I used to come home absolutely shattered and sometimes didn`t have the energy to make myself a decent meal and so there was no wonder I was underweight and looked frail. I`ve been off work for a few months now and have told them I am not going back now, although it will hit me so hard financially and have to go down the benefits route but I just can`t manage it anymore. I`m 60 next month and have decided that I am going to look after myself as well as I can from now.

As I said in the early days I was naive and knew some people saw consultants but I thought that they must be really ill and I had never heard of PR or respiratory nurses until I came onto this site, I have learnt so much on here, thank you all of you.

If I had my time again I would insist that my doctor refered me to a consulant about 5 years ago and if he wouldn`t I would have changed my doctor to one who would and was more knowledgeable about copd.

I start my PR on 5th August. As I say I`m 60 in August and I want to spend the next decade being as fit as possible and enjoying my life.

Sue x

[hufferpuffer]

Sue I'm really pleased you are finally getting the care you deserve, my story is very similar to yours, after ten years I am feeling like at last I'm being cared for properly and I think my PR is starting tomorrow,( I've been told to report to the physio dept) long may we continue to fight our corner! all the best, huff x

[SusieQs in reply to hufferpuffer]

Thank you for your reply hufferpuffer. Hope your PR goes well, I start mine next month but I don`t know about a gentle jog around the track WITHOUT blue inhaler as Peeg says!

Sue x