Got numbers, panicking, should I be or is whats being done sufficient?

Hi Guys

After a long wait I finally got my Complete Spirometry results, along with a load of other results.

To be quite honest I wish I hadnt now, but Im hoping Im looking at the wrong bits.

Ill list the pertinent numbers from these results-

FEV1(L) PRED-3.83, OBSERVED-0.88 OBS PRE % PRED- 22.89

FVC(L) PRED-4.71, OBSERVED 2.00, OBS PRE % PRED - 42.46

PEF -L/M- PRED 546, OBS PRE 183.6 OBS PRE % PRED - 33.64

Note- Expiratory time was unsatisfactory due to SOB, therefore fvc is underestimated

Ive been using- Severity of COPD (GOLD scale) as a guide @-

FEV1 % predicted

Mild (GOLD 1) =80

Moderate (GOLD 2) 50–79

Severe (GOLD 3) 30–49

Very severe (GOLD 4) <30 or chronic respiratory failure symptoms

BMI is 25

Prognosis in COPD The Bode Index is 9. Patients with this score have a 52 month mortality of approximately 80%.

So you can see why I am panicking.

I had TB 10 yrs ago, Emphysema since 2005, Severe COPD diagnosed past 4 years or so. Had a failed surgery on broken badly mended ribs /nerves, where a slip caused a massive pneumo thorax, stopping any further surgery on the chronic pain, and screwing up my lungs.

I have Severe COPD, with a recent community acquired severe double pneumonia, was in hospital for 4 weeks.

I have been referred to a guy called - Dr N Hopkinson at Royal Brompton, with my specialist asking him if there s any point in lung reduction therapy, or any other surgery or therapy.

He has mentioned that because of the recent Pneumonia (New Upper Left upper lobe consolidation) and the spread of emphysema from CT scan, in both lungs, lower sections , there wasnt much chance of any surgery. My understanding is that of the 5 lobes/sections on my lungs I only have 2 that are functioning better than the other 3. And as its top and bottom, most surgeries./procedures are negated??

He has explained I cant do pulmonary Rehab due to long term chronic pain in my right intercostal / ribs area, inhibiting twisting,reaching, bending etc.

Im nearly 50, DONT SMOKE OR DRINK, and want to improve my way of life, as medicine seems to have abandoned me.

Despite these results, My Shuttle Walk results came back at 89%, which is 1% too high to warrant oxygen therapy. Then I mention well maybe the reading should have been taken during or immediately after the walk, not 15 mins later 'Sorry was on the phone'.

I recuperate rather well, thankfully, I do use my own Bl/Ox meter, and go down to 7os very quickly, forcing me to stop, but then I am back up to 89-90 relatively quickly.

But, as I was above 89 on the 'Test' I dont qualify for oxygen. Disregarding this rubbish I bought my own oxygen machine, which I use daily for 30 minutes, and heck it does work, without I can only walk 5-10 mtrs unaided, after using I can make 12-15mts

I have a treadmill at home, and am managing to do 7 minutes at 1km/h each day. I am using my Bl/Ox meter to a level of 70, then I stop. I also go out shopping and walking round Asda twice a week (A long walk)

What does surprise me is that if I use a trolley (Shopping), or hold the hand-grips (treadmill, ) I can go on for ages, but the second I let go, Im beaten in 10 meters.

I also monitor my Peak Flow Daily (Current record is 165-180)

So, Im trying to keep fit, and monitoring everything, and trying my best. Is there anything else I could be doing?

As always, many thanks for reading, and I welcome everyone's advice as to what else I could be doing, also feedback on the severity of my illness based on basic numbers. I have 5 sheets and 3 graphs as well if any more pertinent information is needed to enable words of advice:)

Take care, and Happy Christmas

Cate:)

10 Replies

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  • Don't panic. My spirometry results are worse than yours and have been for some time and I have no intention of popping off just yet! I don't know where you have read the mortality stuff but it is wrong. Exercise is vital and the treadmill and walking is good. Can you manage to lift light weights as well? Something about the weight of a can of beans?

    I agree your oxygen should have been tested after your walk rather than after your recovery but self-prescibing is never a good idea and can be downright dangerous.

    My suggestion would be to go back to your medics for further discusson, tests and advice.

  • Aunty mary's advice is so true

  • Its a bit late to phone the helpline now Catel but you may want to complete the on-line calculator at patient UK to give you a better idea, you need to include your age, height etc.

    patient.co.uk/doctor/Spirom...

    I think your referral to the Royal Brompton is going to help you understand things a lot better when you see the consultant there.

    Keep taking good care of yourself and have a Happy Christmas

  • Thanks for the kind words as always guys.

    I have done the Patient UK with my 180cm height, and 85Kg weight which is @ 25BMI :=

    Spirometry Calculator

    FEV1 (L) 0.88, 4.14Pr, %21 Low

    FVC (L) 2.00, 5.22Pr, %38 Low

    FEV1/FVC Ratio 44%, 79% Low

    PEFR 180, 637, 28% Low

    I was also advised here to use the BODE System, which I posted above, the link for this is :- qxmd.com/calculate-onli...

    I think its just number overload, and every website offers a vastly differing array or explanations, suffice to say Im operating t around 30-35% of my basic guideline for my age/height and weight.

    Oxygen wise, the specialist agreed with me, saying that as I was already using oxygen Therapy, he certainly wouldnt tell me to stop using my own, commenting it can only help, just dont over do it.

    So, fingees xd for a quick referral and a useful prognosis

    Thanks guys, Happy Christmas to all, and thanks for the support the last year:)

  • Your best bet would be to let the specialising professionals interpret your results, especially as you are finding that the information you are obtaining from different sources and websites vastly differ.

    In UK for instances we would usually be advised against self prescribing or self diagnosing, especially so for oxygen therapy and any other drug therapy that would normally be prescribed by a medical professional, for the individual patient, specific to their needs of 02 / drug therapy, dose, duration, etc.

    You can cause yourself harm by self medicating and self diagnosing, potentially putting yourself at unecessary risk.

    My good wishes that you stay well and my advice.... be guided by the professionals.

  • Hi Catel,

    Wow that is a pretty in depth analysis of your clinical situation. May I comment on a couple of things. BMI of 25. Is not necessarily a bad thing, we need a couple of bit extra weight in reserve for any tough times. And the Doc at the Royal Brompton who commented in Pulm. Rehab.?

    A course of Pulmonary Rehab, does not involve bending or necessarily reaching. Although twisting is involved, I avoided it to prevent upper abdominal discomfort. I am a huge fan of Pulm Rehab and only 50% of the course is about exercise the other 50% is about education advice and support. Why not ask for a referral from your GP or practice nurse and take it from there?

    Merry Christmas and keeeeeep breathing!

    PollyP

  • I think too many numbers are just confusing, I don't take any notice of mine, leave that to my respiratory nurse. I am 70yrs old and have had severe COPD for 10 year, I am on 2lt oxygen 15/24 and know how I feel! I take care and meds when I start an infection and just get on with life. I go out everyday even if it is just to the supermarket, do a little housework and just do what I am able. I went to PR and enjoyed it and learnt a lot and now go to a breathe easy group. I also find I can walk for ever on a trolley or my rollator, I think it is because you are not having to support you own weight so much. Just take life as it comes, keep warm, eat well and sleep as best you can, I am going to live to see my little Down Syndrome grandson who is 4 live a happy and fulfilled teenage life.

    Carole x

  • Hi Polly and Carole,

    Many thanks for your advice, unfortunately I have already been sent home from 2 Pul Rehab courses as I was in severe pain right from the start. Ive badly wanted to complete or even attend without incident, but after 2 attempts my GP et al are not too sure yet another try would be beneficial.

    This is basically why I got hold of the treadmill, Bike, and I stick to my own 5 exercise plan, involving Heel raises x 10, Stand Ups x10, Shoulder shrugs x 10, Wall Press x 10, Curl with 2 bags of sugar x 10. I also have a sheet of breathing exercises I go through from hospital Physio.

    I think that this is sufficient, but have only had the Treadmill for a little over a week so its still very early days.I underwent 1 to 1 physio a few years back, where each appointment I was introduced to differing methods of rehab, have also been through the obvious inpatient physio daily when I was in hospital

    . I do feel I am relatively well educated regarding what I can and should be trying, but welcome any further advice with open arms. It may sound like overkill, but when all you do is sit on a chair for 12 hours a day, all you do is think and read the internet (A godsend for advice but a nightmare for every GP or Dr in the world) And getting info from various tests is all well and good, but as you say, they are so confusing etc.Too much info is worse than nothing at all I think.

    Thanks again guys

    Happy Crimble

    Cate

  • i notice the same thing with the trolley. If i put my oxygen pack into a supermarket trolley and push, I can go on for a long time. Take the trolley away and not far. I have much the same problems FEV1 side I am 25% but my sats drop to the low 80's sometimes 70's at time. The problem I have though is my sats are very slow to rise again once dropped. The main reason I need oxygen as that helps to keep the sats up in the first place, or if low because I am not using it will get them up quickly. Try not to worry too much. There is one website that says from diagnosis to death is less than 5 years. But I have been tooting along since diagnosis for 25 years now. And have no intention of popping my clogs anytime soon.

  • Hiya

    After reading a few folk had found the same results as I have by using a Trolley or guide rails enabling us to be able to walk a lot further, I Spent a couple of hours looking in to me getting myself a Roller, and was happy to find they are relatively cheap, (Lightweight Aluminium Rollator With Basket) for £40

    Also found we have a Littlehampton SHOPMOBILITY Shop and Website, where you can visit, try out various items, and basically see what you need before having to buy. They also hire out a large selection of motorized/Wheeled devices for disabled folk. Was a nice find, and will certainly be going back once the festivities are done.

    Will really help if I can find that it enables me to slowly accompany my wife and our dog on his daily walks. Will give me an extra arrow in my rehab efforts I think.

    Thanks for the ideas guys, much appreciated:)

    Happy Christmas to all:)

    Cate

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