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ok go to gp's for overhaul, request blood test as told to by my respiratory nurse, doctor sits there and tells me she is not convinced that i have copd as i am rather young to have it, even tho' i have decreased lung function am out of breath most of the time even tho' chest xray says i have copd, i also have pectus excavatum, where part of chest doesn't form properly also called funnel chest (born with it didnt know i had it), she also tells me my last spiro reading was normal when it said i had 81% fev1, confused slightly, does this mean i don't have it or is it that this gp has this thing that i worry and is trying to mke me feel better or that this gp is rubbish,

Echo :bunny:

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  • Posted

    Hi Echo -- good to hear from you again --- and possibly good news too! I can understand your being confused, it doesn't help that Doc's don't always make themselves clear to us either.

    I would imagine the blood test that your respiratory nurse requested was to check that you did not have alpha 1 anti trypsin deficiency, as this can cause early onset copd, even in non smokers.

    Your FEV1 81% (congrats!) puts you just above the threshold for copd, so that at least is excellent news! As you still suffer with shortness of breath though, you will need to take good care of yourself and get some answers as to what is going on -- perhaps it relates to your 'pectus excavatum' (sounds impressive!) which I would imagine must affect breathing capacity to a degree.

    If you do not get any satisfactory answers then you could always ask for a second spirometry test to double check results or even a second opinion from a different GP.

    If the shortness of breath continues and you are not smoking / overweight /generally unfit, then do keep on until you get answers. Usually it would relate to either lungs or heart, though a heart problem would generally show up on x ray.

    I understand your confusion re your x ray, but again, do ask your doc to discuss this with you. Assuming your FEV1 81% is correct though, you wouldn't be getting short of breath even if you had copd. That is why most of us don't get diagnosed until things are serious, as SOB doesn't usually become noticeable until we are down to 50% or less.

    Echo, I am tentatively hopeful for you and think your news was good news!

    Even if you have some other problem, then it probably can be put right once identified. Just get back to your Doc, ask for clarification on everything, and then if needs be, see what other tests / explanations the doc can offer to sort your SOB. Good Luck with it all Echo, do let us know how you get on, love to you and yours, Vanessa smile

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  • Posted

    Hi Echo bunnyman,

    Soooooooooo confusing. I hope they find you do not have COPD. However, that does NOT mean you are excused keeping in contact with us! Keep us informed please and we will offer hope and good wishes for you.

    Jacee

    xx

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  • Posted

    Hi jacee/Vanessa,

    yep it is so confusing but have decided to err on the optomistic side, spoke to resp nurse and she ran through my xray results which said i have hyper inflated lungs and some blocked airways and something to do with alveoli therefore they conclude that the changes are copd related, good news is that they are going to try other meds (rather than blue inhaler) and refer me to chest specialist, so am trying not to worry get healthier try and shift a few pounds and be generally more chilled!!

    by the way love this little club so will keep popping up now and again!!

    lots of love

    Echo the bunny girl :bunny: [/quote]

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  • Posted

    Hi echo, sounds a good plan. Be wary of meds given - often the inhalers are given as a \"just in case it helps\" rather than anything else as the vast majority of them are designed to help asthmatics. Do as van and I did (though van more than me) and get yourself armed with facts so you can check what is being done, what is being offered and how much that may help. I was actually refused an inhaler by a GP nurse on the basis that it was too expensive!! But I knew it was the only one specifically designed for COPD so argued my case and got it via the respiratory nurse. Good luck!

    Jacee

    xx

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  • Posted

    I also have pectus excavatum and COPD. I have flared lower ribs which make the depressed sternum even more pronounced, but which also gave me a large 5.25 litre lung capacity. The average is about 4.5 L and pectus excavatum can often reduce lung capacity. I started getting breathless lying in bed a couple of years ago at 54 years old and had a chest x-ray that showed COPD. My blood oxygenation had decreased a couple of percent from its normal high of 100% to 96% so was still within 'normal' range and my spirometry reading showed only mild stage 1 COPD so my doctor wasn't that concerned. A couple of months ago I started to get arrhythmia and had a number of tests. The chest x-ray showed the bronchitis is very chronic and widespread and the CT scan showed the emphysema is also chronic and widespread, and going by the scans my doctor has now reclassified me as category 3 COPD. My blood oxygen sits around 91 to 93% at rest but has been as low as 87%. I just had a nocturnal oxygen diffusion test to see how low it drops when I'm sleeping and if I need oxygen at night. It made me consider that possibly the spirometry readings aren't accurate if you have increased or decreased lung capacity due to pectus excavatum. Does anyone have a similar experience? The echocardiogram also showed my sternum is indenting on my right ventricle due to the pectus excavatum, though there doesn't seem to by any physical heart changes except for moderate calcification of the coronary arteries. Apparently some people with pectus excavatum have no symptoms until they are over 50 as before that there chest wall is elastic enough for the heart to move out of the way of the sternum but after around 50 they start to get breathlessness, fatigue and arrhythmia. It's called Symptomatic Pectus Excavatum in Seniors (SPES) and not all radiologists and cardiologists are familiar with it as the research is still quite new and limited. I'm considering a Nuss Procedure but that isn't the only cause of my heart problems. I keep reading how COPD effects the heart and can cause right ventricular damage and is linked to athosclerosis due to the systemic inflammation it produces but can't find anything on heart conduction issues. Apparently my arrhythmia is due to a partial right branch block and a full left posterior fascicular block causing bradycardia, and atrial systole(s) causing tachycardia. Does anyone else with COPD have heart conduction issues, in particular a left posterior fascicular block? My other problem is my phosphate levels have suddenly dropped and my blood pH has risen and now I have alkalosis (venous blood pH 7.45) and hypophosphataemia (phosphate at 7.4 mmol/L). I have asked my doctor a couple of times if I could have respiratory alkalosis but he doesn't think so, but finally has referred me to a lung specialist who should be able to organise an arterial gas exchange test which will confirm or deny if it's respiratory alkalosis. I have come across a fair bit of research on respiratory alkalosis in COPD sufferers, and it seems about half of advanced cases of COPD having respiratory alkalosis and the other half respiratory acidosis. It does seem that those put on assisted ventilation can develop respiratory alkalosis, but I can't find if it can naturally develop in advanced COPD sufferers who aren't on assisted ventilation. Has there anyone out there with COPD who hasn't been on assisted ventilation developed respiratory alkalosis? I've been wondering if this is common or just due to my larger than average lung capacity due to my pectus excavatum. I've given up the pursed lips breathing and have been trying to increase the length of time between breaths and the tachycardia has improved slightly but don't know if I'm retaining too much carbon dioxide or expelling too much. I wish you could measure carbon dioxide levels in the blood add easily add oxygen levels. On that issue I read that fingertip pulse oximeter readings can give up to 4% higher oxygen reading than is accurate with COPD sufferers so my oxygen may be in the high 80s instead of the low 90s. Has anyone had much higher oxygen levels with a pulse oximeter as opposed to an arterial gas exchange test? Thanks to anyone who can help with any over the questions in this long rave. I'm having trouble getting straight answers from the medical profession and the cardiologist at the local hospital hadn't heard of SPES or the link between COPD and coronary issues. He did organise an angiogram to see how bad the calcification is, which hopefully will happen withing the next 3 to 4 weeks. I'm taking 15mg vitamin K tablets to try to reduce the calcification as it cut coronary artery calcification in rats by up to 44% in just six weeks. Anyway, please respond if you have had a similar experience. I'm especially interested in anyone else with both COPD and pectus excavatum, and anyone with COPD who hasn't been on oxygen or assisted ventilation but has developed respiratory alkalosis. Thank you.

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  • Posted

    My FEV1 was also 81% last time i had the test in March but i still have emphysema changes it shows on my ct scan. but i don't really know what all these numbers mean.

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