Frightened

[challny]

I take a new breathing test tomorrow morning. I'm very worried. In February, my FEV1 was said to be 71 percent, but in the last month my breathing has declined precipitously. I just Googled breathing tests and learned that you should NOT used your inhalers beforehand. I did not know that for my last test and I did use my inhalers that morning, so I'm thinking my results were not accurate. I won't use them tomorrow morning. I have tremendous fear that I'm slipping from moderate to severe. I don't know how I will be able to handle that. I have been ill for about 2 years now and I'm having a very hard time with it. One day I was fine, the next day I was not. This last month has been very difficult. Until then, I seldom used my rescue inhaler. Now, I use it 3, 4, or 5 times a day, often taking up to 4 puffs at a time, just to get some relief. I know we all suffer, and I feel for all of you. I don't know what more my pulmonologist can even do for me. I'm on 3 inhalers now and they are not working. I had been exercising quite a bit until a few weeks ago, but have mostly given that up. I will let you know what my results are.

[mellyme]

Hang in there dear fellow Yank! Let us know how the tests go.

[Katinka46]

Hello Challny

I’m sorry I seem to have missed your earlier posts. I have just read them now. How difficult for you, I am so sorry. Who diagnosed COPD? You stopped smoking 23 years ago, and this came on suddenly. COPD is usually a gradually worsening disease, not like being over the head with a baseball bat. And your PFT results are mild but your symptoms are not. Sorry about the interrogation but one of my bugbears is doctors diagnosing COPD too quickly. It happened to me but I knew it wasn’t that. Can you post your PFT numbers here? I obviously can’t diagnose but I am curious.

Alternatively, just ignore this batty old Zebra.

All the best

K

[challny in reply to Katinka46]

Hi, Katinka46. I know I did say it hit me overnight (at age 64, two years ago) but the real facts is I first noticed something as long ago as about age 35. But I was not really bothered with it until 2 years ago. I can actually remember the very first moment I was short of breath. I mean the exact moment. I was taking a long drive in my car. But back then, it would last for just a few moments and then be gone. This went on for years. For decades. Yes, I had been off cigarettes for 23 years before I was diagnosed. At first I thought this was impossible, but since I've been on this forum I've seen other similar cases. You asked who diagnosed me. First, it was a GP at a major hospital who then referred me to a pulmonologist. So I would have to say that I have a legitimate diagnosis. All the standard stuff: x-ray, spirometry, even heart tests. What can I say? This disease sucks, and, of course, I did it to myself by smoking for many years. Again, I'm always encouraged when I talk to others who suffer from the same or similar problems. I do hope you are doing well and I thank you for interest. Batty old Zebra? I think not, unless you have the stripes to prove it.

[Katinka46]

Thanks for your prompt reply. It is 3.35 am here in Yorkshire, England. It’s probably day time for you and RedSox . I sleep somewhat erratically, and wake at odd times. I suppose what got me intrigued by your condition was the possibility of small airways disease (small airways not small disease) and a PFT would show that. SADs can have the frustrating result of symptoms that are worse than the numbers would suggest. And that can lead doctors to attribute the symptoms to psychological causes. Zebras in medical jargon are rare diseases hence my stripy friend.

All the best

K x 🦓

[HungryHufflepuff]

Thinking of you challny. Good luck for today.

[Lindy-loo1949]

Oh dear! I do know how upsetting it is to see your health slipping. I am sending prayers your way. I ordered a book from Amazon the other day and there are things we can do to increase lung capacity. I am trying to implement them into a routine. One of the ones that help is using the neti-pot at night and cleaning out the sinuses. It has really stopped post nasal drip that seems to make its way down to my lungs causing more mucus to form. That's not really good when you have bronchiectasis! Or anything else for that matter. Another thing I do is use a 7% saline solution in my nebulizer after I've used the Ventolin . I can't remember the name of the book I think it's called how I beat bronchiectasis. 99 Cents but it's a short good read. I hope this helps you a little bit even if you don't have bronchiectasis.

[Hidden]

Good luck with the test. I think there is a bit of trial and error until they find the right combination of medicines for you. Sometimes changes can be due to environmental things ( not necessarily permanent). Anyway, all the best, hope you get the answers you need.

[sassy59]

Thinking of you challny and hope things go well for you. Xxx

[Corin1950]

Hi challny

When I first read your post I thought FEV 71% is quite high. My husband's is about 20% but having read through your posts I can see you've had a rough ride. Do you have Alpha 1 antitripsin deficiency?

I agree that you need a clearer diagnosis of what's happening and that a nebuliser would help with your breathing.

My advice would be to continue to get some exercise, eat good nutritious good and maintain your weight ( overweight better than underweight for good prognosis) . As for the drinking I think a little of what you fancy works well but too much alcohol in the blood affects your breathing and probably your mood too as it's a "downer"so you need to reign it in.

Finally and most importantly addressing the psychological aspects of your condition as from my experience these can exacerbate your condition. Being optimistic and a glass half full person can make a big difference.

You've probably had your breathing test by the time you read this post so hope it went well.

Best wishes

Corin

[2greys]

"Googled breathing tests and learned that you should NOT use your inhalers beforehand."

I was told this in an appointment letter for my last PFT. I hit the roof as there would be no way without taking my inhalers that I would be able to walk the 1/4 mile to the bus stop let alone from the other bus stop to the hospital and through all the corridors, with my FEV1 at 31%.

I phoned them up to explain that this would not be able to happen and why. Their reply was that it would not matter as long as I told the technician what I had taken and when.

[Kristicats in reply to 2greys]

I’ve always been told to take my inhalers as normal when I’ve had spirometry testing.

[Katinka46]

Hello RedSox

The smaller airways on my PFTs are shown as MEF 75, MEF 50, MEF 25, (Maximum Expiratory Flow?). Sometimes they shown as FEF (Forced Expiratory Flow?). Some tests show them as separate numbers, in others they are lumped together and presumably averaged.

The other important result is in the lung capacity part of the PFT. My condition is characterised by air-trapping and this shows in the test as Residual Volume (RV). And the higher the number the worse the condition, which of course is the opposite for the spirometry results where the lower the number the worse the condition.

The very first PFT I had was in May 2010, a few months after the PEs. That showed an obstructive disease, with a high RV. The consultant I had at the time diagnosed emphysema. But he was working his way through various other possibilities: mine was sudden onset, no history of toxic damage, and no response to bronchodilators or steroids. I think he would have got to the diagnosis of Obliterative Bronchiolitis in a few months. Unfortunately he retired and his successor wouldn't look at the PFT because he "hadn't requested it." And just told me there was nothing wrong with my lungs. So it took four years to get the dx of Chronic Thromboembolic disease and another four years to get the dx of OB.

So that was a long-winded way to tell you that, yes, SADs can look like Emphysema.

All the best

Kate x

[Katinka46 in reply to Katinka46]

P.S. I am not sure how Emphysema shows on CT scans. But High Resolution CT scans have indirect indications of SADs on expiration, and show mosaic patterning, whether that is the same for Emphysema I don't know.

[challny in reply to Katinka46]

I thought emphysema WAS small airway disease???? How do they treat SAD?

[Katinka46 in reply to challny]

SADs can occur as a kind of add-on to other lung diseases, but generally they are thought to be an entity on their own. Sometimes known as “silent” because they are difficult to diagnose and do not show on X-ray or CT, with only indirect signs on HRCT scan. Some SADs can be treated with steroids and antibiotics if the cause is an infection and inflammation. Mine, Obliterative Bronchiolitis, is fibrotic and there is very little treatment.

K x

[soulsaver]

Have they tried different inhalers? Lots of people find the first or changed inhaler they get doesn't suit them.

ALL the tiotrpium like stuff Spiriva, Brailtus, SeeBri doesn't suit me - I breath better with 'em but after a while side effects get me & I don't.

I also can't take Seretide - they kept increasing the dose until I had respiratory failure in a&e; Also can't take Symbicort.

None of the many GPs recognised the adverse signs. Eventually after changes of specialist and gp, I (not them) realised it was the steroid content was too strong for my lungs & I found my way to Formoterol which I appear to be fine with, albeit not quite so good as Spiriva before the sides kick in.

I also use Clenil Modulite a weak steroid inhaler, seems to help and Ventolin (rarely).

Point is you may need to try different inhalers.

And you may have the start of an infection.

Don't worry about the test. You are where you are, the label makes no difference.

Good luck.

[Izb1]

Hi challny, what a mine field this is, lung diseases are so complex. I was treated for asthma for years before finding out I have bronchiectasis and still cant find a medication that works, so have stopped taking them for the moment as they seems to be making me worse. I am lucky that this is mild at the moment. I do hope that you can get to the bottom of this and find the correct diagnosis and treatment. Good luck and keep us updated x

[Kristicats]

I was instructed to take my prescribed medication which includes inhalers as normal on the day of my spirometry test and have always done so. Can you phone them early to find out?

[challny]

I Googled it and that said DON'T take any breathing meds before the test. But when the nurse said my new appointment was at 11:50 a.m. I said that might be tough with no meds. She said jus take them early and it would be OK. I might try to hold out; we'll see.

[donut43]

Do not give up , always do your best . Check in regularly with your GP ask for a thorough check over with CT scan update and inhaler review . The local RESP team will be a great help with support and up to date advice . Go to the test with good heart.

Dan