Spirometry

[2171till]

Has anyone purchased a spirometer to use at home to give some indication of progress of disease in the absence of tests at docs?

[Katinka46]

My consultant gave me a SmartOne device. It talks to a smart phone or tablet via Bluetooth. It only does peak flow and FEV1. But it also calculates the percentage of predicted FEV1. So I must have fed in my sex, height, age and weight. It records all the results so you can see the trend. For me the ratio between FEV1 and FVC is more important. So I move into guess work and use the last FVC number I had from a PFT two years ago to do the sum. But I think it might be expensive.

[Troilus]

My peak flow meter does fev1 as well, so on a day to day basis I can see what is happening. I also bought a home spirometer from Amazon. Spiro something. The app is called spiroclinic It is very good but expensive. It shows you the graphs that you would get on “proper” spirometry and does things like fev 25-75 etc. You can do most of the tests. It calculates everything and stores the results. It is also very accurate. The only problem with it is I hardly ever use it.

In my defence I will say it was discounted when I bought it.

[Katinka46]

My understanding of a basic peak flow meter is that it is a simple tube that you blow down and a moving marker slides down and you can read the result. They are used a lot. I have been given one. But peak flow is more relevant to asthma not COPD. You really need FEV1 to gauge that.

[2171till in reply to Katinka46]

Thank you for the info - very useful. Was originally told I had asthma, then copd then 2018 severe emphysema! Last saw a doctor 2018 and up until 2 weeks ago only saw respiratory nurse once on 2019. Pretty much left to my own devices....

[knitter in reply to 2171till]

I have a simple peak flow meter on prescription, I use it to monitor my asthma . I was diagnosed with COPD later.

The BLF have a helpline open to UK residents during the working week on 03000 030 555. They can advise .

They also have a comprehensive website .

[2171till in reply to knitter]

Thanks fir the info -BLF MIGHT BE MY NEXT PORT IF CALL

[Karenanne61]

I don't think 'numbers' can give the whole story. I've been told I don't match my numbers at all as I'm more able than the numbers suggest. I rarely check my peak flow , too depressing, or sats. Usually only when consultant tries new meds and wants 'numbers'! I have seen people become so fixated by numbers and the minute changes that they forget to enjoy what they do have.

[garshe in reply to Karenanne61]

My thoughts exactly. They are only numbers, as my Consultant once told me. I don't dwell on my Condition as some do. Life is for living not checking numbers daily. Positivity is the way forward and to a happier life. Take care .xxSheila 💕

[2171till in reply to garshe]

Thank you for your positivr spin on things but I do find it hard sometimes to be positive. Living alone and half a country away from my few remaining relatives hasn't been helped by lock downs, shielding etc al. Trying to bring forward new years resolution to November....and start taking the dogs out before the weather gets too cold, they are somewhat bored with running round the garden!

[Karenanne61 in reply to 2171till]

It is hard to positive when our lives are changed and limited and life feels rubbish. I think it's a skill that needs to be learned and practised daily. Not in a Pollyanna sacherine way but a bloody minded way, e.g. today I'm going to have a nice shower and wear my favourite 'best' coat and walk four doors up (and back! Always my problem) or whatever makes you feel good and happy with yourself.

[garshe in reply to 2171till]

I agree it can be hard especially as you dont have family near. Just try and excercise a little each day and maybe join a group with age concern to meet people. Have a chat with your Respiratory team or Doctor about a Pulmonary Rehab course. This is great to meet people and excercise. I prefer doing my own thing but I have all my family around me also friends .hoping you will feel better soon and all your resolutions come true. Take care xxSheila 💕

[Patk1 in reply to 2171till]

It must be extremely tough whn family dont live near xxx

[ProudYorky in reply to garshe]

I so agree my way of dealing with my ILD is to not think about test flows ect get on with what I've got and let the Consultants do the worrying for me after all they get paid to I don't onwards and upwards lol

[garshe in reply to ProudYorky]

My way of thinking. My Consultant always comments on how I look and my attitude during my appointments. I was told by one Consultant that he has patients who are in wheelchairs and on 24/7 oxygen but their readings are much better than mine. Its because they choose to give in and not try. If you dont excercise you will lose your mobility. My daily excercise is not visiting the gym but walking around shopping precincts and garden centres etc. I take my time and stop when I feel the need ,theres no rush. Love my shopping trips and chatting to people . I was diagnosed 12yrs ago with Severe COPD , quite scary at the time but decided then I would not dwell on it . It's not Terminal but Progressive, you determine how fast this goes and can slow it down with the right attitude There is always someone worse off than yourself. Positivity is the way forward and be grateful for what you can do not what you cant. Have a lovely day xxSheila 💕👍

[Karenanne61 in reply to garshe]

Pink coat and blue docker day for me Sheila! Happy days!

[garshe in reply to Karenanne61]

Sounds fantastic. Enjoy your day. I'm off out in my Joe Browns vintage boots. As the song goes .These boots are made for Walking lol xx👢👢🏃‍♀️🏃‍♀️💕💕

Off out xx

[katieoxo60 in reply to garshe]

Your clothes and yourself look very smart, the boots will wear well for walking and of course it will keep you well doing the exercise . Best wishes.

[garshe in reply to katieoxo60]

Just got home from 4hrs of shopping with my daughter and Granddaughter. Had a fantastic time. Stopped off to look at the Xmas decorations in The Range, very festive. Ready to relax now and watch a lovely Christmas movie... enjoy your evening xxSheila 💕💕

[2171till in reply to garshe]

Sounds good...wish I could do the same but breathlessness gets in the way. Was doing well but then broke another rib which put me back then coffee went down the wrong way and 8 weeks later just about over it. Onwards and upwards- the upwards is still the breathless bit have to practice more going upstairs lol

[Walkwalkwalk]

I agree about the numbers. My consultant is much more pessimistic about them than I am but then he is an observer not living with a lung condition. If monitoring the numbers is helpful for you there are a variety of options. Why not discuss it with your consultant as there seems to be a move towards home spirometry being used by some centres. Grace

[2171till in reply to Walkwalkwalk]

Although I was diagnosed with severe emphysema in Dec 2018, I haven't even seen a doctor since and until a couple of weeks ago, only saw the respiratory nurse once in 2019. I think the word is 'abandoned'! Yes it's my fault I'm ill but people forget that 60 years ago a trip to the doctors would ofter find him smoking a cigarette or smoking a pipe!!!!@

[JJ_7]

I have an oximeter, Blood pressure Cuff, and Aural Thermometer. I use them when I feel I am relapsing . I have been admitted to hospital so many times with pneumonia I am almost scared to mix with people. Taking observations is helpful but I do not let it rule my life.