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Metermaid
Metermaid

I am recently widowed after caring for my husband (we were 45 years married) for the past 5 years, who ultimately became quadriplegic. Life has been very difficult, with no help at all from any of the Authorities. I don't regret a moment of it and still miss him desperately. Life has been pretty rough, but then what happens? Something comes along and kicks you in the teeth. That something, in my case, is COPD. At the end of the day, I feel as if it's one of those self-inflicted illnesses (in my case, as a 30 a day smoker) and so I'm reluctant to tell anyone what my diagnosis is: it gives them less of a chance to say \". . . it's your own fault!\" So, I'm keeping it secret and am telling those who need to know, that I have developed asthma because of the recent stress in my life.

I've been 7 days without cigarettes and it's a struggle. I've been reading around on here and know what I should be asking when I see the doctor tomorrow. My illness is not as severe as some of you, but I have also learned (from reading on here) that exercise is a tremendous help. I've had a brisk 15 minute walk today and hope to build on that each day

I shall ask for the Fev1 score tomorrow and hope to be able to improve on that too.

Sorry if I'm sounding too bright and breezy, but after reading around on here, I've at last got some strategy to dealing with what life has thrown at me and have now got some sort of a future plan.

Thank you for reading this

0 likes, 24 replies

24 Replies

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  • Metermaid
    Metermaid

    Posted

    15 days smoke-free tomorrow. Not entirely true actually as I weakened on days 2 and 6 and begged a cigarette from two different people. I'm feeling a bit proud of myself actually though, and despite sitting with people who are smoking on a couple of occasions, I haven't given in again.

    I've been trying to master the art of diaphragm breathing today but can't seem to master it. I can swell my stomach out using muscles (!) but surely it takes more than that. Also, this pursed lips breathing out lark always leaves me coughing whereas if I breathe out normally I don't cough. And I don't just mean a little lady-like cough, I'm talking a hacking coal miner type cough. Very embarrassing in public. :oops:

    If the Doc seems to be in a kindly mood tomorrow I have a list of questions for him:

    1) What was my initial Fev score

    2) Where can I go for Pulmonary Rehab

    3) Should I buy a Pulse Oximeter or can the NHS get one for me

    4) Should I have a supply of Steroids/antibiotics at home

    I was pretty poorly when I initially went to the doctor, with a very bad chest infection so my Fev score will not be a true reflection of normal circumstances. My performance on the day leads me to believe it was 2% or something equally bad.

    Thank you all for your kind thoughts and I shall report back :oops:

  • Van
    Van

    Posted

    Hi Rita,

    When you ask for your score, remember to ask for it as your 'FEV1 percentage'.

    There is no point asking for an oxymeter - even those of us on oxygen don't usually have one - it's just that some of us that are on oxygen have bought our own to keep an eye on our 02 levels when exercising etc. However, you could ask him to check yours for you while you are there with his oxymeter, and make a note of your oxygen level too.

    If your FEV1 is lower than 50% then you could ask about pulmonary rehab - be warned you may have quite a wait though - I waited 9 months for mine.

    The 'breath easy' address and phone number I sent you was for a similar thing. It's not a clinic or anything. It is a group of COPD'ers getting together for a cuppa and a chat and some light exercise or a chat on a copd topic.

    Well , I'd best be off to bed, I have a hospital appointment tomorrow for my cancer scan. Good luck for tomorrow, and do let us know how you get on, love Vanessa

    PS see about getting a flu jab if you haven't already had one.

  • Metermaid
    Metermaid

    Posted

    Well ... I feel such a fraud. Apparently my FEV score was initially 37%, although at first he told me it was 64%, then he did a bit of a double take and moved the score downwards. It seems he used a different acronym too, but I feel bad about the drama I have made on here, when others are so much worse.

    After your advice I didn't ask about the Pulse Oximeter and will probably just try to continue with the exercise. I don't think breathing through my mouth helps, but I find it so difficult to breathe through my nose when walking. So, I have bought a matching hat and scarf and am going to cut the end off the scarf and make a face mask with elastic to go round my head. It might help to prevent chest infections. Of course, a Burkha might be better :D

    The Doctor agreed that I should have a stash of Prednisolone and Anitibiotics at home, so they are now safely here. He has dropped the dosage of the steroids to 4 a day for the next 6 days, then to stop, although I am to continue with the Simbicort and Spirivs indefinitely.

    After discussion with him, and because I feel so much better, I asked if he would cancel my appointment with the Consultant on 1st December. To be honest, I'm not ready for it and was dreading it. I lost my mother to COPD in the same hospital and want to put it off.

    He is trying to find me some Physio to help with diaphragm breathing and upper body exercises and has promised to 'phone as soon as he has tracked some down.

    Thanks for listening.

  • Metermaid
    Metermaid

    Posted

    Oh dear - no replies to my post. If my FEV score is 37% and this was taken when I had a chest infection, would it mean that if I was tested now that it seems the infection has cleared up (well almost) that my score would be a lot higher? The doctor didn't offer to do it again and I didn't like to ask and it seems that now I'm left with the steroids and antibiotics and have been told to call for an appointment the next time I get an infection. After all that worry, it now seems that everything has come to a halt. I want to try to improve the score on my own, and so am constantly trying to breathe in deeply and expel the breath slowly to the maximum. Will it have an effect, or am I wasting my time?

    Any advice gratefully received.

  • Van
    Van

    Posted

    Hi Rita,

    Sorry to hear that you have canceled your consultant appointment as they are the one's that specialize in this disease and have all the knowledge. When I had my first consultant appointment about 3 months after my initial diagnosis , they did another spirometry and , yes, having cleared up my infection and stopped smoking etc I did see an 11% rise from 29% to 40%. The thing is, we are all different - and really to get the best and most precise care for you, you should see the consultant. GP's generally don't know much at all about COPD. Many don't even understand which number is the FEV1 for instance.

    Still, it is your right to chose what treatment you do or do not want to have, but please don't be too quick to deny yourself the best care. It is often the consultants or their nurses that get the ball rolling with pulmonary rehab or sort out oxygen if you need it. Do think about it and see if your GP can remake that appointment for you if possible.

    Lots of Love Vanessa xx

  • annsco
    annsco

    Posted

    Hi Rita,

    Just to say that I saw a consultant for the first time on Wednesday and it wasn't at all scarey or anything like that. He praised me up big time for stopping smoking and asked lots of questions. He has taken an armful of blood and is arranging for me to have a chest scan and some more breathing tests. When all this began my FEV1 was 34%. I don't know what it is now but I do know that I feel a lot better than I did but am very aware of my capabilities (or lack of them)!

    As Van says it's your decision about consultant but I want what's best for me and I think using what's on offer and then making my mind up is the way I shall go. I am still waiting for a better inahler than Ventolin - maybe after I get next set of results?

    Anyway you keep walking and breathing deep - hope you post again soon,

    Ann

  • annsco
    annsco

    Posted

    Good grief!

    My post has just arrived and I have an appointment for a CT scan on Tuesday evening at 6.40 pm. They were quick off the mark to arrange that! I take it I won't get the results until I see the consultant again in January.

    Hmmm.............is this good news to have it so quickly??

    Ann :?

  • Van
    Van

    Posted

    Hi Ann - that's great news! I think you must have an excellent consultant! As it's happening so quickly it might be worth getting on to your Consultant or GP after to have that January date brought forward. The scan should give them a clear pic of your lungs and then assuming it is confirmed as copd and no other factors, they will sort your meds out better. I am so pleased for you!

    Lots of Love and Hugs :D Vanessa x

  • Guest
    Guest

    Posted

    [quote:9d7bd661a6=\"annsco\"]Good grief!

    My post has just arrived and I have an appointment for a CT scan on Tuesday evening at 6.40 pm. They were quick off the mark to arrange that! I take it I won't get the results until I see the consultant again in January.

    Hmmm.............is this good news to have it so quickly??

    Ann :?[/quote:9d7bd661a6]

    Good luck with your CT scan Ann.

    I think it is good news to get it so quickly.

    Hoping the results prove to be good news too.

    V

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