Surprised that I am still walking, if not slowly, around! My lung function test FEV was just 14%! Although I wasn't feeling great the day of the test and could barely blow into the machine never mind expel air, it did come as a bit of a shock. At least I have now been given a nebulizer. Anybody out there with similar FEVS and still breathing and leading some normal semblance of a life?
Regards
Malinka
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Well hopefully now that I have a nebulizer, I may get rid of some of the glue like substance and start to breath better. Hey, I haven to be optimistic.
I too work just three days a week but now am retiring end of July.
Mind you I am 65 and on oxygen. I quit smoking in 1992 but was told that once that switch/pathogen starts in the lungs COPD is progressive. Oh well, I still live to fight another day.
Malinka, In 2010, I was on oxygen at home and with bottles to go out. I used teh bottles to go for one hour at the gym. Gosh, the staff of the gym wanted credentials from my doctor. I gave them and carried on three times a week. Yes, it was ahrd, of course! But 2 months after going there, I could stop the oxygen.
I enrolled on Pulmonary Rehabilitation - which you can do by being referred to the pulmonary nurse. She is amazing, can advise you on all sorts of things; I find her better than the doctor because she is so down to earth and KNOWS!
I am 66. I had bronchiectasis since 1994. I had been deteriorating more or less rapidly. In 2010, I was dying! Got the presence of TB, after having had pseudomonas and penumonia. Never give up! You can do it. step by step. Take courage, this forum is a testimony that we can do it and you too.
Like others, I don't believe that this illness is progressive only. No, he progress can be slowed with good drugs, vitamins (I take Vit C + zinc for the immune system, and A,D in cod liver oil), good food, and vital in my opinion, EXERCISES! Taje courage, Mic
Oh thank you so much for your response. You have given me hope. My other problem is oxygen levels. As I am a CO2 retainer I was told not to go above1/2 a litre for min 15 hours daily. I do some exercises at home; just basic yoga positions and lift a few weights also try to walk a bit round the house. I know that if I don't push myself I will be too frightened to do anything and then..... I did try PH once but it was held at the local Leisure Centre and the room was poorly ventilated and the people running it just kept rushing me, and then on leaving I had a problem getting out of the car park as the barrier had stopped working. I was in a terrible state , could barely breath with all the exertion. Luckily a couple of lovely girls got somebody from the LC to sort out the barrier. It did put me off completely. Oh well I might be 65 but I would like a few more years.
Once again thanks for being so positive. You certainly are an inspiration.
I'm about 18%. Work 4 evening shifts a week. This is what I was doing before I got diagnosed 4 years ago. In fact I was only doing 3 shifts then !
I only have emphysema and I don't agree that it's progressive. I'm on oxygen 15hrs minimum/day but very low. Only half a litre per min. I don't use it at work. I do most things although I have to plan ahead and it takes a bit of time.
I recently visited my grown up lot who live 200 miles away. I stayed a few days and ended up mowing a rather large overgrown lawn ! It took a bit of time but I got there !
I turned 65 last month and I don't intend to retire for a few years yet.
I woke up this morning finding it difficult to breathe. My chest was tight even after my medication. I then used my neb. That didn't do a lot either.
I was determined to go down town to look around the shops.
I put my little knapsack oxy bottle on my back. Struggled to the front door into my car and drove down town. I walked to all the places I wanted to see with many a stop.
I got back home after a couple of hours, instead of an hour. My breathing is a whole lot better now but not as good as it can be.
I too am on oxygen 1/2 litre min 15 hours daily. I understand that COPD is an umbrella term for Emphysema, Bronchitis Obstructive airways disease etc. I like your positive attitude. A consultant told me that I had end stage emphysema when I was working 4 days a week. So, I just laughed and said oh right, so how long have I got? He was embarrassed because as there is not cure for this disease medics won't admit that they don't know anything but just shove inhalers, steroids oxygen etc at you.
Thank you so much for your reply. You are right. Why should this disease be progressive? We have the power to stop it.
It must have been a shock Malinka but, as you said, you didn't feel well, so it would have been a poor reading. Next time, if you keep doing what your doing, the reading could be higher. xx
Yes it was. I couldn't believe I was still alive. At least now I have been given a nebuliser. I know that I am not that bad as I can still get around. I am trying not to get hung up on nos. Thank you so much for your response.
Hello Malinka, I'm very happy you're still with us!😀oops it went off before I finished, How you feel is so important and your good attitude and love of life! There are many people living slow but active and happy lives just live one day at a time and enjoy life, huff xxxx
Hi Malinka. What a shock. Glad your feeling OK despite the numbers. I don't know mine. I don't work but leave an active life & enjoy what I do B east wishes Nan
Hi that's wonderful well done. I bet it was a shock though to hear your lung function. I know there are some on here though with similar levels who manage to have some quality of life. And that's what it's all about at the end of the day isn't it? x
I would have been shocked too. If you were feeling a bit wheezy, that could effect the reading. What was your reading last time, and how long ago was it? You'll have to agree, there's some pretty amazing people on this site!
No need to look elsewhere for inspiration, that's for sure 😊You just carry on Malinka , you'll do just fine..
Hi, I am measuring my FEV1 daily. My values vary from 15 to 23 (19% avrage). I don't know if these fluctuations are common however for me it is, together with some other symptoms, an indication to wether or not call my GP.
Good Morning! I read your post and smiled a little! I have always believed that the "numbers" are for the doctors - each year my husband has a spirometry test and the stress of it combined with the ever worsening FEV1% makes him quite ill and I have to say I feel quite anxious. I had a stern word with myself last year and decided that I would make a judgement on his health on how well he was doing. The last test showed 25% and even the nurse said "Well you look better than those figures!". In my humble opinion keep walking, stay well and judge your health yourself. You know your own body best. Take very good care and do keep walking, lots of love TAD xxx
Your FEV1 can change a lot from day to day by quite a few percent so it's a bit awkward to clarify. I take mine as an average over a few weeks rather than the reading on the day.
My lovely " Children " ( most in their 20's ) asked me what I wanted one Christmas. I said a Vitalograph. When I explained what it was for, they were all for it and bought me one !
I went to the hospital this morning Fev in March was 33.2 today it was 34.5 not a lot of difference I know but that's good for me and I think the move to the country from Heathrow area has done me some good although I miss my family still after 14months
I have no illusioin that it mgiht prove difficult, but do what you can, very gently. If you become short of breath, stop. that's the key to success. Gently does it.
I have a nebuliser. The important bit is what you put in it! My doc prescribed Combivent (Ipratropium bromide and Salbutamol sulphate) I only use it twice a day, but there was a time when I used it 4 times a day.
Tell us, is it the only drug that your consultant gave you? If you still feel short of breath with this, perhaps you should ask him to give you a reliever of some sort. I hope you can improve a little at a time. Mic
Thanks for your helpful response. I also have symbicourt, Spiriva and ventolin. Also because I am a CO2 retainer on oxygen for 15 hours daily 1/2 litre, Bi-Pap machine because I barely sleep and now a nebuliser! I virtually have my own hospital wing!
By the way, I m not Russian: Malinka was the name of my lovely cream tabby who sadly died a few years ago.
I do a little yoga exercises and lift 2 kg weights and try to walk about my house as much as possible. I have seen that chest expansion video before but I probably did it wrong as I ended up hyper-ventilating. The physiologist at Harefield Hospital has given me a sheet of different exercises to do. I will have a go.
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