Oh, what a mystery is our affliction - British Lung Foun...

British Lung Foundation
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Oh, what a mystery is our affliction


Hello. I have not posted in some time. Was DX about 3 years ago with emphysema/asthma. It has not been fun, as I'm sure all of you can agree.

But things have gotten much worse for me since Christmas, to the point where I can no longer sleep at all because of SOB.

Went to pulmo yesterday. I was sure I would leave on 02. But oxygen reading on my finger was 100. I was surprised, to say the least. In August, my FEV1 was 75, which I just could not believe.

So, yesterday, doc does chest x-ray and says it looks good. Shows slight hyper inflation, but not much, she says. Says my lungs look quite normal.

Bottom line, she says I should not feel as bad as I say given my numbers. She has said this to me before as well.

She actually suggested that I might want to see another pulmonologist. I'm not sure if she was just trying to get rid of me. No, she assured me, it might just help to get a new set of eyes.

She wants me to see my GP and jottted down some things she wants him to check: Thyroid, testosterone, Vit. D.

Could it be possible that something beside COPD is contributing to my SOB?

I've made my appointment and have her notes ready. Both docs are at same hospital.

I don't know what's going on, and apparently neither does she. She works with a large pulmonary group at a major hospital and has a good reputation.

I don't know what to think anymore. Thanks for listening

11 Replies

Just a thought as I have had emphysema for some years, but as the xray looked better I felt worse and the breathlessness increased. My pulmo did blood tests and I was severely anemic. Still am but the iron definitely helps . Hope you get sorted. Jane

Hi Challny. I haven’t heard from you in a while . Again , I don’t want to beat a dead horse but how were you dx with emphysema with a passing PFT and clean X-ray. Have you had. CT Scan ? How is your DLCO ? If I were you I wouldn’t hesitate and go get a second opinion. You need to address that SOB ! Possible a Cardiologist might be needed or a Sleep specialist. Hope you get an answer as I’m sure it must be very frustrating. Btw I would love to have an FEV1 of 75% maybe your FEV1/FVC is low.

Oh Challny by the way I was wondering what inhaler you were put on ? Maybe that may be your issue .

in reply to RedSox

I have been on Spiriva Respimat, Symbicort and Ventolin almost from the beginning. But just yesterday she switched me to Trelegy just to try something new. I must add that I have never felt any relief from any inhaler I've used. Doc said she would not order at CT scan because there was nothing in my x-ray to warrant it. I'm still able to exercise and I'm very consistent about walking 2-3 miles just about every day. I feel crappy when I'm walking, too, but no crappier than I feel while I'm sitting on the sofa. The real horror is sleeping; I can't -- until 3 days ago when my GP phone in a small prescription for klonopin. Ah, blessed sleep! But I'll be out in a couple of days.

in reply to challny

That walking is brilliant, keep it up. My breathing gets bad when I have an infection but don't know it (can take a week or two to show). Seems to me, given all our wide variation of symptoms and reactions, that while your numbers seem 'fine', the way your particular body reacts is hitting your sleep. All the best with it

Hi challny, finding the right inhaler can be very difficult. The wrong ones won’t help you at all and you’d feel like you’re getting no benefit from them. Also as RedSox asked, have you seen a cardiologist? The other day I was told my deteriorating breathing and SOB might be due to heart problems and I’m going to have that looked at (ecg) so that could be a new route for you to go down? Wishing you all the best 🤞

I agree with others challny a second opinion is a must. Somebody needs to know why you’re so short of breath. I wish you well. Xxxx

Thanks for the replies. They mean a lot to me.

in reply to challny

I have nothing constructive to add to what’s already been said other than to wish you all the best for a proper diagnosis very soon. 😀

Hi Challny, sorry to hear you are suffering this sob and worse that your pulmo has dumped you because she doesnt know whats causing this, so frustrating. Must agree to a second opinion, terrible that we have to constantly fight our corner. Wish you the best and keep us updated x

Ask as well as Vitamin D,, have you had a Coeliac blood test? If iron comes back low ask for ferritin levels to be checked.

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