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gloria1947 profile image
19 Replies

hi I'm Gloria and new to this site,i have just been diagnosed with copd and it scares me ,so I am reluctant to talk about it hope I'm able to overcome this fear I have

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gloria1947
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19 Replies
sassy59 profile image
sassy59

Welcome Gloria, you are amongst friends so feel free to speak about COPD. Xxxx

Hi Gloria welcome...dont worry about feeling like that you can't talk about it just yet ...its a mix of emotions and a process that only you can fathom out when your ready to....its not all that's discussed here any subject is good ...but we are all in the same boat with lung conditions of various kinds so when your ready to it will happen ....welcome aboard Angie xxx

skischool profile image
skischool

Welcome Gloria,As others will tell you there is no ideal time to talk about your own condition but at least here you have the time to amass a mountain of useful factual information and first hand experiences that will eventually help you overcome your initial fears and begin to realise that our conditions are well manageable in helping us lead relatively normal lives...........best wishes skis and a scruffy cat x

gloria1947 profile image
gloria1947

thankyou skis I wwill read all posts and ,try to understand ,what is happening to me and my illness

Hi Gloria and a warm welcome to HU, yes COPD can be very scary at first I put this down to fear of the unknown and our medical services not keeping people gened up on health problems more as we age and more as most of us are baby boomers (born in the 1940's - 5o's) in most of our growing years we were around smokers and some of us tried them too but we had very little health education, but at last education is available now from members from the British Lung Foundation. You did the right thing in joining HU questions or queries on posts will help at first so now you are with us, stay you will soon say to your self what on earth was I scared of? so once again welcome. Ant and geriatric cat.

2greys profile image
2greys

As the other post have said it will take a little time to come to terms with. Most of us, like you, have been there, scared out of our minds on diagnosis. There is a lot of disinformation out there so avoid Dr. Google if you can, instead ask questions from those of us here, who live with this disease.

It is not a death sentence by any means, I have severe copd and live a mostly normal life, I still manage to work full-time too. So, by changing your lifestyle, you can carry on living a normal life too. Being short of breath is frightening to start with, but I promise you that you can get used to it, that you can manage your symptoms. There are many members here who suffer with copd and can testify to it. So when you feel ready to talk about it, just ask, we will and do understand.

Mairap profile image
Mairap in reply to 2greys

Hi.. I read your answer. And I want to know, if you let me ask you, how can you work with severe COPD? Because for me it's imposible. I'm from Argentina, and I'm looking for answers. 34 years old , COPD , bronchiectasis because an accident with carbon monoxide and smoke fire. I can't work. Breathless, tachycardy, phlegm, cough. :( . My fev1 now is 34%. Last year It was 22. But I don't feel so much better.

2greys profile image
2greys in reply to Mairap

I am lucky in the respect that I only suffer the Emphysema element of COPD. Which means I do not produce an excess of mucus or cough. On diagnosis I had an FEV1 of 37% which I managed to increase to 50% in March which has presently fallen to 46% because I did not exercise so hard because I got too hot during the summer months. My ct scans still only show the bottom third of my working lungs remaining.

I an self-employed and have a small engineering business, I am the only person who can fire or medically retire me. I have to use pursed lip breathing all day whilst working, it now comes naturally and no longer have to think about doing it.

I exercise daily to what people might call the extreme, until my chest hurts and my lungs screaming to stop, and push a little more after that point. The saying of "The more you do, the more you CAN do" is very true. My muscles have acclimatised to working with less available oxygen, similar to high athletes altitude training. How do you think people manage to climb Everest without oxygen?

I have also lived up three flights of stairs for 30 years so as my un-diagnosed condition deteriorated over those years I did not notice because my body got slowly used to it. That has helped.

I eat a high protein diet, three times a day with lots of fruit between meals and drink lots of water.

I take all my medication at the same regular times of each day. I take my once day inhaler (Spiriva) first, in the morning and then the combination inhaler, bronchodilator/corticosteroid (Fostair) 1 hour later. My rescue inhaler just after lunch to get through until the end of the day.

I am not as bad as you are, obviously, but I am also 67 years. I am sure that you could improve some more, but it does take dedication and self disipline towards an exercise regime, take a week off from it and you will really feel the difference and it will take a month or more to get back up to where you were before. You are young enough to cope with exercising easier than I am.

Osha profile image
Osha in reply to 2greys

2greys I would like to ask you about your exercise regime I take my dog for a walk twice a day but it is quite sedentary. When I get out of breath my heart goes boompity boom and then I worry about it. I don't have heart problems but it does concern me please advise if you can

2greys profile image
2greys in reply to Osha

I can only speak for myself, I do have a cardio vascular disease that I am prescribed nitrates for but I would not need them if I did not exercise as hard as I do.

I warm up on a static cycle set at the middle setting and then 30/45 mins on the rowing machine set the highest resistance or I walk 2.5 miles to my watering hole have a meal and walk back again which does include two steep hills and this is every day unless it is too hot and then the level of exercise is reduced until it is cooler.

You have to dedicate yourself to doing it every day to keep up the benefits of exercising. Not because it benefits breathing but the heart as well. Hard going some times especially on your bad days but worth it in the long run. I was diagnosed with severe copd 18 months ago and still working full-time. Is exercise worth it? Go figure, it works brilliantly for me. I am beyond the retirement age for a healthy person. I am not alone in this, there is another current member who has achieved an even better working record than myself. It is possible.

Fionafish profile image
Fionafish in reply to 2greys

I have a tracker watch and when I exercise I go by my heart rate (above 120, below 150). As soon as I hit the mid 140s I ease off a bit. I read that your pulse while exercising should not exceed 220 minus age. It would be hard for me to exercise really hard without exceeding the limit which I am cautious about - is this something you do or worry about?

2greys profile image
2greys in reply to Fionafish

I am 67 and my bmp will hit 155/160. No, it does not worry me as I have slowly built up to that level over 3/4 months. I will keep up that level of exercise until I am told otherwise by the cardio consultant who until now is happy with it.

Fionafish profile image
Fionafish in reply to 2greys

Thanks for info - I might push it up over the next couple of weeks and see what happens as would like to push myself more.

Osha profile image
Osha in reply to 2greys

Thank you 2greys you really are an inspiration I will try harder from now on

Amanda3011 profile image
Amanda3011

Hi welcome to the group .. it is scary at first fear of unknown but I have put my focus on eating healthy and trying the things that are out there that can help ie salt pipes and enjoying each life to the full ... I have 3 gorgeous grandchildren that I need to stay healthy for ... I initially thought I’d been given a death sentence but you can have as many years left in you as Joe Bloggs it’s all about taking life by the horns and looking after yourself , healthy diet and exercise is the key and talking on here is a massive help , I didn’t want to scare my children by talking to them of my fears and hubby just doesn’t talk about it ( his way of coping) although very supportive ... don’t be scared talk to us we all seek support at times and I have only been on here a few weeks but they are a great bunch that make me laugh smile and answer my questions , sending hugs xx

Leesea profile image
Leesea

Hi Gloria

It is hard to talk about and such a mixture of emotions on diagnosis.

I have found other members of this site to be way more supportive then busy doctors. People are so helpful. Welcome to the site.

gloria1947 profile image
gloria1947 in reply to Leesea

thanyou for your reply and welcoming me to the site ,,its going to be hard at first ,but listening to all your replies I am beginning to understand a bit more x

lKeith profile image
lKeith

gloria1947

We've all been new at some stage, welcome. There are people on the forum who have had to live with this ailment. Please do not be frightened by this we've all had to live with it, some for many years. They have experienced much of what you are going thro' and come out the other side as you will do.

Keep active, do the exercises and keep well.

IKeith

Dedalus profile image
Dedalus

Hello and welcome Gloria. This is a great site to help you feel better x

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