I finally went for my first proper lung assessment yesterday after being diagnosed a year ago. The only other test I had was back then and taken by the practice nurse with basic equipment. The hospital had all the gear.
My doctor ( the previous useless one ) said I had 43% lung function. Tests yesterday came up as 27%. I was a bit surprised, to say the least. I have been having a bad spell this week so the tests were done at a time when I was at my worst. Today I seem to be over the worst of it and feel I am breathing nearly normal again so I expect the results would have been different. The hospital doctor wants me to go back in a month because I said I had better days and wants to compare results.
Apparently I have emphysema but not bronchitis. My oxygen transfer was 31%. I have a question. If the transfer rate is 31%, how is it that my oxygen/blood percentage is averaging 89/91%.
I also have to go back for an oxygen test as I am on the cusp as to whether I need supplementing or not.
I also have to go back for a CT scan. The doctor said something about checking for cysts or nodules on the lungs and also to verify the emphysema. I am not worried about the scan itself but am about whether something else shows up. Are nodules anything to worry about ?
He is recommending to my doctor to change one of my inhalers for Symbicort. Are there any side effects to watch out for, being a steroid is involved.
What a ramble !
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Puffthemagicdragon
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morning.sorry to learn that you are going through so much.sorry i can,t help you with any of your concerns.you can always google Symbicort to check side effects.good luck & best wishes.
Hi, I am sure all your questions will be answered quite soon, they are a clever lot on here.
Glad you are feeling better today.
*polly
Hi Puff - first may I say how good it is that you now have a consultant looking into your situation - even if it means going back and forth for scans etc at the end of it all you will know exactly 'what's what'.
Firstly, lung function differences - it may well be that as you suspect, your fev1 will improve considerably now that you are feeling better. It may also improve a few points more after being on Symbicort for a few months. My own fev1 went up with it after a couple of months. Also - it is not just about fev1 with Symbicort - I find it helps lessen the feeling of 'hyper-inflation' that many of us with severe emphysema get (that feeling of fullness in your lungs - like they are too full for your chest cavity and too full to get any more air into). In fact the Symbicort/ Spiriva combo works really well.
The steroid component of Symbicort could be described as a 'micro dose'. That micro dose has great effect over time as it damps down inflammation. The advice is to 'rinse and spit' after taking it, or take it prior to cleaning your teeth in the morning. I take mine immediately on waking so that twenty minutes or so later my breathing feels better already. I take my Spiriva about five or ten minutes later.
One word of advice - do not make the mistake of using your Ventolin before taking Symbicort. Many people have made this mistake thinking that the Ventolin 'opens up the airways first'. Not only is this a nonsense, but it actually interferes with the uptake of the Symbicort so that it has little effect. One of the components of Symbicort is a much stronger version of beta agonist drug than the one that is in Ventolin. If Ventolin is taken first it fills those same beta agonist receptor cells that the Symbicort is meant to go to - only then there is no space left in those cells for the Symbicort . If you still feel a need to use your Ventolin as a rescue inhaler , then do so by all means - but only after an hour or two has passed since taking your Symbicort. I haven't needed a new Ventolin inhaler in about two years! To be honest, I think it does absolutely nothing for us when we have severe/ very severe copd anyway!
Next lets tackle nodules. Nodules are pretty common in smokers over the age of fifty even in those who don't have COPD. Most are absolutely nothing to worry about and are perfectly harmless, however because there is a small chance of a cancerous one, if any do show up on a scan then it is repeated a few months later. This is to check if a nodule is growing - in which case it may be cancerous and so it can then l be treated. The thing to keep in mind is that most are nothing to do with cancer, and even if one is cancerous, knowing about it sooner than you otherwise would have means having it dealt with at a much earlier stage.
Most of us with very severe emphysema have scans - they can give a much clearer picture of YOUR emphysema. Take the opportunity to find out as much as you can from this 'peek inside you'. Is your lung damage more in the upper or lower lung? Is it spread all over? Are there Bullae? Is there hyper-inflation? etc. The more you ask the more you will know (assuming you want to know of course).
If it turns out that you need oxygen then grab it with both hands and welcome it! Make it your friend and appreciate that you can gradually regain a little of the energy and strength that you have lost if you make the most of it and get as active as you can. We can talk more about that and any queries, thoughts or concerns you may have if and when you join the ranks of us 'Airheads' In the meantime Puff, stay cool, and know that you are now in good hands with your consultant. P
good morning ,how knowledgeable! you have just put several things clear for me ,so thank you very much .I have Alpha 1 & take all these drugs and steroids,i have good days & obviously bad,At the point of understanding now as i lost my job last week due to so many infection since April with 7 weeks off.
where do we go from here is the question.
do i need oxygen,how ,if yes much ,if at all??
what am i entitled too, if my doctor says im unfit for work
Thanks for a lot of info Parvati. I'm not bothered about having oxygen as one of my concerns is not having enough of it in the blood which can harm the organs, so I welcome it.
Like I said to my daughters, after they called to see what the results were, if I live to 90 and can still walk then I'd be happy !
Today I feel not far off from breathing normal. I get slightly puffed out if I push it but would I have done so even if I didn't have COPD ? If I felt like this everyday then the COPD wouldn't bother me in the slightest. It's annoying that on another day I can't walk more than than 3 or 4 steps without gasping for breath then on a day like today I could walk a couple of miles at a steady pace and only get a little puffed out. Grrrr !
I will take your advice on Symbicort on board. I also find the Ventolin doesn't do much, nor any of the others, when I'm going through a bad patch.
Hi puff
The CT is usually arranged when under a respiratory consultant, its the one way diagnosis of emphysema is confirmed. Having the CT scan doesn't automatically mean you will be at severe stage, but it will give the consultant a true picture of the actual damage in your lungs. Being under the consultant is a good thing, you will go through thorough testing to be sure of the reason/s you have a breathing difficulty, for some (but not necessarily all) this process can reveal more than one problem.
Glad you are being called back for further testing on the lung function, for comparison after your 'bad spell'. the percentage can vary from time to time. Hoping you will see an improvement on your next LF test.
The inhaled steroid is useful in emphysema as it is this that helps prevent the lung inflammation. Side affects of medicines will not always affect every one that uses it. Always remember if you feel the medicine is not working for you personally, or you are getting some bad side affects, go back to the doc and let him/her know so you can try something else.
Check the information leaflet that comes with the medicine/inhaler to avoid such things as thrush, (some meds recommend rinsing and brushing teeth after medication is taken, this is something that is important I feel). Take the medicine as prescribed, usually about the same time every day, you may need to give the medicine 1-3 months before you start to notice any real difference.
It says that below 30% is Stage 4, very severe, but most days I feel at about Stage 2, moderate, not even severe. I'm not trying to fool myself, it's the way I feel. On my bad days it definitely does feel very severe though !
It's not Symbicort the doc recommended. It's Seretide. Any info on the product would be helpful. How long before it starts to work, how effective users have found it, etc.
I received a letter with the consultants diagnosis. I'll leave all the figures out for now and just write the last paragraph.
" In view of the abnormal ECG and borderline arterial blood gas I will arrange for him to have an HRCT scan and echocardiogram. i would be grateful if you would switch him to Seretide ( from his Formoterol ) and I will ensure that he comes back to the Oxygen Clinic in about a month's time for repeat arterial blood gas. I am mindful that his CO2 is slightly elevated and his bicarbonate is elevated as well and I am concerned about his respiratory failure so we will need to keep a close eye on his symptoms and progression over the course of the next month or two.
I would be grateful if you could refer him to a local course of Pulmonary Rehabilitation in the meantime. "
I think I should point out that I was having a bad two weeks at the time of the assessment and, hopefully, when they do the next one I will be my "normal" self. Like how I feel today, in fact.
" Examination today revealed blood pressure of 100/65, oxygen saturations on air were 90%, pulse 100 BPM regular. JVP ( Jugular Vein Pulse I think that means ) is not elevated, his heart sounds were normal, chest auscultation revealed generally very poor air entry but with minimum wheeze, abdomen is soft and non-tender and he has no ankle oedema.
Pulmonary function tests reveal very severe emphysema with an FEV1 of .73, 26% predicted. ( What does the PREDICTED bit mean ? ) , FVC of 2.8, 75% predicted, giving a ratio of 27%. ( A lot different from the 43% at my doctors clinic ), His residual volume is 256.6% predicted and his TLCO is 35% predicted. Today's chest x-ray shows emphysematous changes but nil focal. Arterial blood gas on air revealed a PaO2 of 7.7kPa, PaCO2 of 6.2kPa pH 7.4, bicarbonate 31.2mmol/l. An ECG today revealed sinus rhythm - borderline tachycardia at 106 beats per minute and P pulmonale ".
Phew !
Lets hope the next tests are an improvement.
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In the meantime Puff, stay cool, and know that you are now in good hands with your consultant. P 
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