So I went for my results from PFT with the specialist who said all results were great and show no sign of any lung promlems what so ever, which I was obviously really happy About and would love to move on from this and hopefully breathing will get better in time however Iv noticed that the volumes (VC and ratio ) as in previous posts Iv read in the past, an increase in these isn't a good thing. The doctor didn't mention these number. I know it sounds like I'm trying to find a problem (I'm really not) if anyone as any advice I'd be greatful 😊
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Tinkz
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and good news for you...but the numbers - I don't understand, but someone will and I hope they will be along very soon. If your Specialist was happy with your results, I'm pretty sure you should feel a lot easier now in yourself and can get on with your life
It all depends on your age/height Pnewcombe. In the results, "pred" is what is predicted for someone of your height and age, and "actual" is your results if that makes sense
Relative to what he sees on a daily basis those results ARE excellent.
And when I say 'just', a few years ago 'normal' was 70%... UK lifted it to 80, but some areas still say 70. So you're well in, depending where you live.. silly as that.
If you've had a hrct and nothing shows, keep off cigs, avoid colds, keep your bmi good and get fit - you'll live to see your grandkids grow up.
I recently discovered that I have severe alpha 1 anti trypsin deficiency a genetically transmitted condition which can lead to early onset emphasema . I discovered this via a private dna test. When I asked my Dr to test my alpha 1 levels they found they were less than 10 percent of what they should be. They did spirometry expecting my lung function to be terrible. It was in fact better than yours. Despite my excellent spirometry, like you I am also experiencing increasing breathlessness, on exertion particularly. I am due to see a specialist next month. As in your case my mother developed emphesema. She's a lifelong non smoker. She is a carrier for Alpha 1. It is a relatively rare condition but you may want to rule it out. Your gp can organise a simple blood test to check your alpha 1 levels. Results should come back within a week. I am a fair bit older than you - 57 and doing fine at the mo.
Afternoon Tinkz. It does look good. However, as you have spotted your lung volume results are borderline. RV is residual volume. And that is what is left after you've exhaled. 131% predicted is slightly more than normal, 125% is the upper limit. But RV as a proportion of TLC (total lung volume) is 120%. So I think you can feel reassured.
But if you still feel that your symptoms are bad then gently and politely push the doctors.
Sorry, I should have explained that RV can indicate air-trapping. This will be present in Emphysema and in my condition: Obliterative Bronchiolitis. My RV is 163%.
Thanks Zorro, hope all goes well with consultant and he/she can advise on meds to help you out with breathlessness. Keep us posted!! I have thought about alpha 1 given my mother has it, (and her grandfather died with it) she was in hospital with real bad pneumonia and they told her she had "emphymous changes" she saw a consultant 6 weeks after and said she was told in hospital she has emphysema, and he said I'm sorry you've been told that but you don't have it, you have changes which means you have smoking damage and if you continue to smoke (she give up straight away) you will have it in 5 years time, however when I saw her hospital notes it said she has emphysemic changes with bulle. to me that sounds as if she has got it.
Thanks again for your info Kate, I was expecting him to tell me I had airtrapping as that is how Iv been feeling, working harder to breath in and our but he didn't mention anything and I find it hard to say anything as he and everyone else seems to think all is fine and it's all in my head (I really wish it was) now Iv been told all is good no problems with lungs, I don't need any more tests, feel like I can't push for further investigation as they just seem to think I'm just being stupid. So I'm going to try and get on and suppose see how I go. It's difficult with the constant SOB and this niggling away in my head. Kate does RV/TLC fall in normal range? Is that what you mean?
Hi, Tinkz, I will let you know how it goes with the consultant. I will be asking for a referral to a specialist Alpha 1 clinic as well. There are only about half a dozen in the UK but they have the proper expertise to deal with this condition. If you do have the Alpha 1 genes you are entitled to a referral according to NICE guidelines.
Also after he told me I don't need to use inhalers, I told him I felt I did he give me spiriva, told me to take this once a day with the symbicort and ventolin if I need it!! Does anyone know if spiriva is instant or does it take a while to get into the system?
Hi I used to take speriva and found it a great help with my breathing. As everyone is different. What is good for one is no help to another. I was told by one of my consultants that no 2 people with COPD are the same. I hope spiriva helps you xx
Tinkz, there are 2 uk based alpha 1 support groups on Facebook. Given that you may well have inherited at least one defective gene you may want to join. The other members are very knowledgeable and supportive.
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