Shock results : I had to change doctors... - British Lung Foun...

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Shock results

Jessie8ruff
Jessie8ruff
9 Replies

I had to change doctors on moving to my latest home! The previous month I’d gone for my usual respiratory check with my nurse at old surgery! She asked if I would try a different inhaler‘Trimbow’ saying many surgeries in the area were trialling it! I agreed. After doing usual tests said readings were a little down on last check 6 months before, but did not say what they were! A couple weeks later, mid November I had a nasty chest infection, unfortunately had left taking my emergency pack a few days & infection took hold! I ordered new pack ready!

Shortly after I went to new surgery, where they immediately had me see the practice nurse for initial check! She did usual & then did my Fev1 & said last reading was lower than before at 54%! She said she wanted me to have another month on Trimbow & see how things went still not telling me present reading! I had to go back in a month!

Over Christmas I had another infection which I had caught early so antibiotics got to work & felt much better quickly! But after that I was aware I was still more sob than usual & was coughing much more phlegm than normally none really when well!

Went back for review & told Fev1 still down at 48% repeated & this time she said this is not good, I really imagined I was going to sit there waiting for ambulance! Then she said it’s down to 28% could not see reason why! Result I had to go back on previous inhalers which are Braltus(tiotropium) & Duoresp Spiromax(budesonide) Had these few years! & of course Ventolin Salbutamol as & when for many years !

I really don’t know what I feel like! Not good but not that bad considering such a drop in my lung function!

What should I ask for if anything?

I am struggling with increasing my exercise having been unable to manage stairs before I am really pushing myself in last 6 months till I now do 1 flight up in 2 stages as long as not carrying anything so can pull on banisters between 3-5 times a week! Amazing myself!!

Thanks as usual for reading my story!

Margaret

9 Replies
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Caspiana

Hello Margaret, ☘️

Just so I am understanding correctly, your lung function went from 54% , to 48% then to 28% , can I ask what the length of time was going from 54 to 28? It does seem like a huge drop and from what I can glean from your post, quite sudden? It could of course have something to do with the inhalers, but it still seems extreme to me. I would ask for a CT scan to see what's going on and take it from there. And don't push yourself too much with exercise until you know what's going on. I'm sorry it's been so very difficult. I hope you can get to the bottom of this very soon. Please do let us know how things progress. Sending love and hugs.

Cas xx 😊👋💐

4 likes
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Jessie8ruff

Hi Caspiana, my memory not too good but checking in diary for appt dates at gp’s. I think they meant before 26/11, it had reduced small amount to 54%, then checked on 13/12, was told on 8/1 was 48% so checked again , then on 10/1, told check done on 8th was 28%! Does that make sense, to me just means a rapid drop from Nov to now! No problems with O2 levels fine 95/6%I will ask about referral back to consultant (who had discharged me till worsening, which I think maybe now) & to ask for CT scan again!

I have to return for further review in 3/4 weeks!

M

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Caspiana

It's rather a sudden drop Margaret and do definitely cause for further investigation. I think its a good idea to see your previous consultant and if possible a referral to a specialist. Take good care. xx ❤️

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knitter

Has your lung function been checked again, now you have stopped taking Trimbow. It may take a few weeks for the inhalers you have been put back on to take effect.

I know some inhalers do not suit me, we are all different, what suits some people may not suit others.

Have you been offered a course of pulmonary rehab? Has your sputum been tested , or a blood test done to see if your chest infection has cleared. Or an x ray advised?

I would get my lung function tested again if it hasn’t been done and ask about rehab, as well as test for infection.

Best wishes .

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HampshireLass

This happened to me when put on Trimbow. I don't know my figures as you should not really do a blowing test if you have an infection or are just getting over one, surprised your nurse did. Took me some time but back to feeling normal (for me) now. Don't know my figures because as I said, you have to wait before having a test. I rely more on how I feel and what I can do than the figures. Hope you feel better soon.

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Jessie8ruff

It was about 2 weeks after each infection that I had tests but still shows an overall drop of considerable degree even if I go back to last May!

But I do know I feel more breathless and Between when first diagnosed copd in 2011 to before last November 2019 I only really had much of a cough or produced any sputum to speak of unless I had infection mainly winter time & now I am coughing on even minor exertion & sputum is much increased & differing in what it looks & amount, dour & color!

So I know it’s not good!

M

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Chriskho

Sounds like an unusual rapid drop. You could ask for a CT scan to find out what’s going on?

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Jessie8ruff

I intend to do in 2/3 weeks or earlier if worsen! So need to see nurse/Gp earlier!

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