Seen Consultant: Since I was diagnosed... - Lung Conditions C...

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Seen Consultant

twinks1954 profile image
33 Replies

Since I was diagnosed with COPD in July this year, I have been asking my Nurse and GP to be referred to Consultant. Several times I asked them and they kept saying that they only refer when they can no longer manage disease. I had spirometry in July with the Nurse at GP's and it came up 73%. Inhalers they gave me did no good and had 4 different ones - Qvar, Symbicort, Seretide. I was nervous going to see Consultant last week as had a heavy cold. It was at Southampton General Hospital which is a large teaching Hospital and seen top Consultant in Pulmonary Department. Firstly I spent 2 hours doing spirometry test in booth, only had pc with nurse before at GP's. Did 6 minute walk, loads of puffing and came up as 84% even with a cold. The guy explained that when you have spirometry at GP's it is always lower. Probably due to hospital having all the proper equipment. Had scan and chest x ray. I had 3 previous chest x rays which came back negative,. Finally saw Consultant and he was great. So patient and explained everything to me. He brought up readings on PC and said in his opinion I did not have COPD. He said... ' I dont go just by the 84% but the other readings on the test too ' and he says if he was shown this, then he would say................. person does not have COPD. Chris and my son where with me and we all sank into chair with relief. At very least.................... if I have COPD....................... it is very very mild. He is going along the route that I was diagnosed and been hyperventilating. Referring me to breathing Nurse and sleep apnea test. We came home and my son said................ at least you are in Hospital system now Mum. I have follow up with Consultant in March 2014. Have I been hyperventilating all this time? There was a lot of stress this year with illness with partner etc.

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33 Replies
kimmy59 profile image
kimmy59

What wonderful news. So pleased for you your family must be relieved. What a great christmas you'll be having.

Kim xxxxx

twinks1954 profile image
twinks1954 in reply to kimmy59

Bless you Kimmy. xx

twinks1954 profile image
twinks1954

Thank you Fibberti. As a family, we did have a lot going on this year. I am going with believing the Consultant and NOT the Nurse at GP's. Spirometry, sitting in the booth felt more in depth

KingoftheCocktails profile image
KingoftheCocktails

What a good result

KOTC

twinks1954 profile image
twinks1954 in reply to KingoftheCocktails

Thank you KOTC xx

Puffthemagicdragon profile image
Puffthemagicdragon

What a relief ! Those booths really are the best way to test for COPD in my opinion. Also the CT scan.

twinks1954 profile image
twinks1954 in reply to Puffthemagicdragon

I explained to the guy that I had a cold and he said lets do it anyway and see what we come up with. Full 2 hours it took and I felt confident in him............ whatever result I got back. When I saw Nurse in July, she was flapping about on the pc and I was getting more and more agitated.

onamission profile image
onamission

I'm going to see a consultant at my local hospital on the 19th I'm lucky my husbands company gives us health insurance and in return we give the tax man loads of money for the privilege however I have never been sent to the hospital and this all came about when I asked my GP if he would do a blood test for alpha 1 I'm sure mom had this.

I'm now level 4 COPD so think its time I saw a specialist I was diagnosed 10 years ago.

twinks1954 profile image
twinks1954 in reply to onamission

Good luck onamission xx

Kad21 profile image
Kad21

Hi Hypercat54, I have had numerous chest xrays over the last 5 years and all come back 'clear' wasnt until I had a cat scan that they diagnosed COPD, so try and have one of these as they show all xx

mustcarryon profile image
mustcarryon

Hi hypercat

Have you thought about changing your gp. the way you have been treated is a total disgrace.

Offcut profile image
Offcut

I am now waiting for my specialist appointment, My Spirometry in the doctors was the tube and usb in their PC which showed restrictive lung disease and I was 53% lung function I have night time gasping and problems breathing when flat. I recently found I had worked with asbestos for 10 years. I have waited over 18 months for my doctor to refer me!

Be Well

twinks1954 profile image
twinks1954 in reply to Offcut

Disgusting to wait that length of time. If someone has cancer or heart problems, they are sent to cancer/heart specialist. It's the same, or should be, for lung problem. Good luck with appointment. xx

Offcut profile image
Offcut in reply to twinks1954

Thank you not sure which side of the year I will get one?

Good for you insisting on seeing a Consultant. Great news for Christmas! TAD xx

twinks1954 profile image
twinks1954 in reply to

Thank you Tad xx

casper99 profile image
casper99

Fantastic news for you and your family Twinks. It's worrying about what the future affect of having this disease will have on my family that gets me down the most.

If I were you, I'd be partying like it's 1999 this Xmas. So lovely to read a positive story for a change. xx

twinks1954 profile image
twinks1954 in reply to casper99

I understand that Casper. Wishing you a peaceful Xmas with your family xx

ptliverpool profile image
ptliverpool

This is great news Twinks, but I wonder how you have been diagnosed without seeing a consultant or having a cat scan. My doctor said he suspected COPD when I went to him in February but it was the consultant who eventually dignosed Bronchiectasis not COPDin April after tests and scan.So I wouldn't take GPs word for it they are not specialists.

If I were you I would party,party, party and we will all wish we could too.

twinks1954 profile image
twinks1954 in reply to ptliverpool

I think it must happen a lot ptliverpool. People going to GP and having spirometry test there. Thats what they went on and the fact that I am an ex smoker. I wish you well xx

ptliverpool profile image
ptliverpool in reply to twinks1954

I'm an x smoker too thats why doctors always think"COPD". I'm doing fine thanks.

PTxx

cofdrop-UK profile image
cofdrop-UK

Good news twinks - really pleased for you - nice to hear a good news story.

Love cx

twinks1954 profile image
twinks1954 in reply to cofdrop-UK

Thank you cofdrop. Take care xx

twinks1954 profile image
twinks1954

Well you dont know what damage has been done Bev. They kept refusing to refer me to a Consultant and giving me different inhalers. 4 different ones in 5 months. I never got to see the same GP and as rarely gone to docs before July.......... they didnt know me. Finally they said I shouldnt have these symptoms at this early stage. They sent me for 3 chest x rays since July. I had one back in March when I had chest infection. I said to Chris, they think I am a paranoid crazy woman. They only took me seriously when Chris came to see GP with me. Then they said I may well be hyperventilating as Chris told them about his illnessess this year. Thats how I got Consultant referral. Consultant referring me to physio to work on my breathing and do sleep apnea test. I'm glad he is going to see me again in March. Email me if you want Bev xx

poppyval profile image
poppyval

That's great news Twinks. Good luck to you and yours. You will have a lovely Xmas. Cheryl

twinks1954 profile image
twinks1954 in reply to poppyval

Awe thank you Cheryl. Stay well and have a lovely Xmas xx

helingmic profile image
helingmic

twinks, it's so good to hear your good news for Christmas. Now relax as much as you can.

I was given a piece of advice on how to deal with hyperventilation. have a paper bag,NO plastic bag as these are dangerous! Breathe into the paper bag, in and out, until you feel freer. This is recommended by doctors for people who become anxious.

Will you have a pulmonary nurse? they are usually sweeter and down to earth more than doctors because they see people on a day to day basis and know how anxious a person can become.

The physiotherapist should be good to in showing this breathing technique to alleviate hyperventilation.

Do you do any exercise? At my gym, someone who is 81 years old just enrolled. but if you don't want to go to a gym, are you able to walk, do some Tai chi (great to relax) or yoga?

Best of progress and come to tell us about your progress. Cheers! Mike.

twinks1954 profile image
twinks1954 in reply to helingmic

Hello Mike and thank you. Many thanks for tip with paper bag. There is a gym round corner from me which I am going to join after Xmas. I do fancy Tai Chi as well. Keep well Mike and have a lovely Xmas xx

twinks1954 profile image
twinks1954

Please nag them to see a Consultant Bev. I'm not sure if COPD shows up in blood tests. Ask Nurse to explain it to you............ what test in her opinion showed up the COPD? My SOB hasnt gone and I guess I will have to work on that. Where it was great that my chest x rays came back clear each time............ I realise that it doesnt show everything. Ask to see your GP and not the Nurse Bev. Interestingly, the Consultant said to me that he feels the minute someone says they are a smoker or ex smoker with breathing problems - they are labelled with COPD. I do hope they sort it out for you as anxiety all adds to it as I now know. Please let me know how you get on Bev and if there is anything I can do to help xx

mustcarryon profile image
mustcarryon

You're so right, I had more x-rays this year when I had a c/I, the doc said we know you have copd but when you come to us ill we have to check that it is that and not something else.

peege profile image
peege

Oooo, I'm so cross with your GP s practice Bev.

NO, a normal xray doesn't show damage. You need a CT scan to show what is there.

Over the last few years I've lost count of the number of xrays I've had which came back 'clear'.

I was finally referred for a CT scan on 19th Dec 2012 after 4 months of chronic bronchitis and many different antibiotics that didn't work until finally Azithromycin over a further 2-3 months.

CT scan didn't happen for 6 months because cons refused. He was a rude dismissive pig so I refused to see him and saw a lovely young registrar. The first thing she said to me was 'looking at your history I'm wondering why you haven't had a CT scan, have you refused one'?

She organised it and after another couple of months I managed to see her again and she was brilliant in showing and explaining. She said she was very pleasantly surprised and had expected to see only holes (what ever that would mean). The damage was clear on both lungs but she said it was very good news and that I had a beautiful pair of lungs. I cannot tell you what a relief it was/is.

Its now my mission to stay as healthy as possible.

Others fag smoke, smelly candles and traffic fumes etc kill me so have to practice avoidance tactics but all in all things are going well.

My GP has doubled the Seretide to 500 2x daily for the winter and its brilliant.

Sorry to go on......... Just knowing i dont have bronchiectasis, emphasemia or aspergillosis has changed my life into no longer wasting it thinking up ways to end it and now look forward to the future.

I'm cash poor but was at the stage of trying to beg borrow or steal the money to get a private scan.

I know its your choice to smoke Bev but I hope you find the strength and courage to cut them down slowly to zero.

Can you change your GP? All the very best to you XxxX

peege profile image
peege

Such brilliant news for you Twinks. I know just how you feel having had a similar experience and may not have copd. Still have moderate asthma but that's better controlled now.

Fantastic for you and your family :-)

twinks1954 profile image
twinks1954 in reply to peege

Awe thank you Peeg. I couldnt understand how inhalers were doing nothing for me. I have no doubt that I did have a chest infection somewhere along the way and it all snowballed. I'm glad you are well xx

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