I am currently trying to work something out and although it may not be 100% accurate but a rough guestimate will help me feel a little better.
I have a letter from my specialist to my GP which states my Fev1 is 4.48 (100%)
The rate of lose of FEV1 I have read is 30ml per year for a non smoker.
So my 4.48 equates to 4,480 ml taking 30ml a year from this figure does not seem that bad which leads me to think i am doing something wrong. can you help ???
I am such a worry wart and I am trying to make myself feel better as I have really struggled with this diagnosis
Thanks Guys
Breath Easy
Justin
Written by
jayspurs
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Hi Justin - well no wonder you are struggling with those numbers. My husband has sever Copd his fev is 27% so I can't help you but the nurses on the BLF helpline might be able to. Take care and please don't drive yourself mad worrying! Lots of love TAD xx
hi jayspurs, i agree fully with tadow,, phone the blf.
worrying will only make matters worth, off course thats easier said than done,,, but i do think thats your best bet ,, the blf,,,,,hope you get some satisfaction,, jimmy
Your Fev1 Is 100% of predicted- ostensibly normal. Dont know why he's telling you about the loss pa, but I assume men average loss is 30ml pa. So next year if you blow 30 ml less than now you'll still be 100% of predicted. Taken by itself your Fev1 is normal so I'm guessing your a big lad (or at least have big lungs) and have had some symptoms. So I'm guessing its your Fev1/FVC is lower than 80%, and your history (smoker/ex?) is suggesting COPD. Got any other numbers in the letter?
I wonder if your FEV1 is 44.8% - how advanced is your condition? Mine started at 61%, so mild, and I've been incredibly lucky to be able to get it right back up to 89% (at last test) through extreme exercise and using a salt pipe. The advice to speak to BLF is right on - they are brilliant. But also to stay in this forum - it is full of incredibly lovely helpful imaginative people. I knew nothing about COPD when I was diagnosed, and it was a real blow, but this forum has really helped me start to get to grips with it. Good luck!
Wow that is a very impressive improvement. You mention extreme exercise and wondered if you could be more specific. I know everyone has different capabilities or limitations but would still be interested in knowing your exercise program.
Hiya Justin, yes you are a bit of a worry wart, but I think you are understanding it correctly. Your FEV1 in absolute value is 4480 mL (100% of what is predicted for "average healthy person" of your sex, age, height and weight). This FEV1 of the average healthy person would be expected to reduce by 30 mL every year, so after 30 years the reduction would be 900 mL in absolute values to 3580 mL (which would correspond to 100% of the predicted value after 30 years). If someone has lung disease the reduction of FEV1 may be higher than 30 mL and therefore the predicted value would be lower than 100%, and considered as indicative of a "problem" when lower than 80% (as 80-120% are considered within variability of the population). I think for now your FEV1 does not indicate a problem and as drs now have a personal reading for you and know where you sit on the variability around normal, changes over time (if any should occur as you may well be stable and stay at 100%) can be interpreted in the future more readily. I hope that helps. Take care xx
My advice is the sae basically....contact the BLF nurses and then put you figures away and start working to improve your figures. Don't let them dictate your life, control them. You have to eat and eat well so ensure everything you do eat is top notch fresh and at least five fruit and veg each day. Don't worry too much about weight control because if you eat healthy it will stabilise. Next, start an exercise program...no gym or expensive equipment involved. Just around the house to start, with if that's all that you can manage but fresh air is important too. So, choose your time outside wisely. Early mornings and late afternoons sees a lot of extra traffic on the road so avoid those times. Avoid areas where a lot of people congregate as they will have the power to infect you, which is a MUST to avoid. Go to the shops, library etc at quieter times. I usually go between 1 pm and 3pm when the kids are in school and mums are generally at home waiting to collect them. Use infection control in your own home such a sanitizer container inside your front door, in your pocket, bathroom, bedroom etc. Need to kill bugs as soon as possible. Every sneeze, every used tissue all have their dangers. Kick out anything that affects your breathing, aerosols, strong smelling soaps etc and avoid smoky areas such as bbq's and , dare I say it, pub gardens. In short, take control of your life and your home and improve your well being and your breathing will improve. Allow yourself "ME" time and make sure those around you appreciate the need for it. You cannot relax and exercise breathing control if someone wants to talk about the gas bill or shopping. Claim that time. Keep your exercising simple and fun but push yourself to do more every day and don't worry about being sob....even top athletes are sob when the compete. It just means your lungs are being exercised. Then, avoid using your inhaler to get your breath back....use breathing control. Give it a try. Keep a diary if it helps and plan for a new, active life. If there are things you cannot manage any more, replace these with something you've always wanted to do but never had the time for......and then the figures will just be a distant memory.
Thank you for your advice and just wondered if you could expand upon your statement about not using inhalers but rather use breathing control, specifically what types of breathing control and how do you perform them?
Yes. The inhaler I was talking about is the ventolin one. Ventolin is a good drug but you can easily become ventolin dependant. I used to have one inhaler a week but now one inhaler lasts me three months....and the instructions I have are 2 puffs, 4 times a day and then use as and when needed. Breathing control has many different exercises. The one I use nearly all the time is breath in through the nose and out through pursed lips. Aim to blow out a little bit longer each time. I use it before going upstairs, pausing if I have to half way up, when I'm getting dressed...in fact everywhere and then again after exertion. If I put my oxymeter on my finger, I can watch the oxygen levels increase. It helps by getting rid of old air and Co2 that is in your lungs, taking the capacity that fresh air should be taking up. Also, if you are panicking because of SOB, as you blow out, make a noise....any noise, in your throat and listen to it. Then you will automatically try to get the noise longer and your breathing will return....a sort of distraction therapy....you concentrate on the noise, not your lack of breath. One time that it is important to use this breathing control is after you take your other pills and potions morning and evening...in your "Me" time. The reason being most of the other medicines require you to suck in, such as Spiriva, Serevent etc. You are training yourself to ALWAYS breath in through your nose and out through your breath. Your nose has loads of hairs and blood vessels close to the surface and so it will filter out bugs, dust etc and get the air to body temperature so that it doesn't shock your windpipe or make you cough. More breathing control exercises are available fro BLF...I think you can download an instruction sheet of when and how to do them. You will find one that works better for you than some of the others but just keep plugging away at it and you will win...trust me.
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