​The impact of a diagnosis or not in the case of mild disease.

I thought I’d put pen to paper to describe my situation to those who may be troubled by mild disease & the mental health impact or a diagnosis of same. I've seen some recent posts that display these characteristics so hopefully this may be helpful for somebody.

Back in ‘04 @ 33yo I was about to get married, I had also just come to end of a 17-year relationship with smoking. I was a “social smoker”, smoked a lot less than my peers and was convinced by only smoking when I had a drink would keep me from harm’s way. It didn’t and in my late 20’s found myself with a script for asthma meds and recommendation to quit all smoking. As I felt well at the time and was quite fit, I passed this off and took up running. What I didn’t realise was that I was effectively enrolling myself in a self-directed Pulmonary rehab staving off the ill effects from smoking which I was still doing.

Working in a business where I entertained clients, being in a relationship with a smoker and living in a country where social life revolved around the pub I continued to smoke for another 4 years. On a roll up I had a 6-year pack history. Nothing to most here unless you are susceptible. So, for these for years it was a routine of chain smoking 2 and a half packs at the weekend in the pub or club, get the lungs back of track with inhaled steroids during the week and go for it again at the following weekend, week after week, year after year.

For some further background my Grandmother a lifelong non-smoker died from emphysema and both my mother and sister suffer from COPD. My mother had a minimal smoking history and my sister (with a lung age of twice her age, she’s 40) never smoked. I tested negative for Alpha One, but I’m convinced we have some Gene that predisposes us to COPD or as my sister says just crappy lungs.

So back to ‘04, a long-term hacking cough, a sense my breathing was off and a feeling my inhalers were not working prompted a trip to a Head of a Pulmonology Department in a local hospital in a major city. He’s well regarded in his specialist area and pre-COVID traveled to the US several times a year to speak at conferences.

I might add at this time I was also experiencing all sort of other “colourful “symptoms at this point like joint, back, sinus pain headaches etc.

To be fair to my Pulmo he was thorough & sympathetic to my plight and threw the book at me test wise, I had every test under the sun, but nothing showed up except a slight reduction in MMEF 25-75 of 80% predicted. In fact, everything else was over what it should have been with FEV1 111% and FVC 121%. DLCO was also above normal.

At the time the jury was out on the value of MMEF due to several factors although I notice it’s being brought back into the frame recently as small airway dysfunction seems to be getting more attention.

This is an interesting picture I see time and again on these forums, some with good FEV1 and FVC values and a low MMEF being told they have nothing wrong by Pulmonary doctors and having a level of breathlessness not in check with their PFT’s.

I personally (but what do I know) believe the low MMEF in the context of a high FVC is relevant. My Pulmo does not agree :). I haven’t spoken to him in over 6 years about this so maybe he’s changed his mind.

Some of these people like me have irreversible component related to the small airways that they can feel. In the overall context of the Pulmonologists day to day consultations these patients with a preserved FEV1 aren’t even in the minor league. In fact, with their PFTs are most likely better than a significant cohort of smokers that never report symptoms.

For this reason, Pulmonary physicians don’t hand out a diagnosis of COPD unless there’s a measurable decrease in FEV1 and FEV1/FVC in line with Gold / ATS standards. There’s no point, it’s impacts everything, health insurance, mental health etc. They’d rather use terms like “No significant disease” in reports because this is the reality of the situation.

So where do you go with a real sense your breathing is off and a level of smouldering Chronic Bronchitis but near normal test results. The answer is that like most things in life there’s no silver bullet, it’s in your hands to make the most of an unfortunate situation.

It took me a long time to realise this and because of my obsessive personality it took me to a nervous breakdown. When I was at my worst, I could have magically been given a new set of lungs and I would still have had issues breathing due to the psychological component.

In my search for answers, I conversed with US based Pulmonary experts / RRT’s on mail, read every peer reviewed medical paper on COPD, pestered my local experts, and drove my immediate family and my wife up the wall. How my wife stayed with me is beyond me. To say some were worried about my situation is an understatement.

So, what got me back on the straight and narrow and how are things now? Well, the answer is much better.

I was fortunate to meet an elderly primary care doctor who also had asthma and smoked himself in his twenties and thirties. We clicked and he was generous with his time. He recognised straight away there was a significant component of anxiety and guilt related to my situation prescribing an SSRI Lustral in the process. After a month on a medium dose, I noticed I wasn’t paying as much attention to my breathing and was sleeping better.

I also had a significant component of hyperventilation; this continued for many years and did resolve after a few sessions with a respiratory therapist. Some of the exercises she used with me were similar to some I have seen with Buteyko although having tried it at one point I don’t recommend it. Going to bed with your mouth taped up is not my thing.

I also threw myself into everything I did, whether it was walking, cutting the grass, running or working. I listened to music or podcasts on a of quality pair noise cancelling earphones to take my mind off my breathing and constantly searching for those elusive high quality deep breaths became a thing of the past.

Lastly, I stopped Googling and didn’t log onto a medical site ever again. I also took up cycling getting to a reasonable level, I wasn’t breaking any records, but I was fitter than ever.

As they say busy mind is a happy mind.

So, what brings me back here? Recently I wanted a rain check on my progress to see if things had deteriorated, I did an office Spirometry and noticed a larger than usual drop. I have put on weight during lockdown so that’s my first port of call. I’m certain my FEV1 will improve if I drop 2 stone. I’m also trying a LABA and an ICS to see if things are any better now the psychological component has waned. I have gone since 2015 with no inhaled medication whatsoever. One thing I have noticed also recently is my consumption of carbs is somewhat related to my breathlessness. I see the marvelous Russell Winwood (COPDAthlete) has a participated in a study regarding this with very positive results.

So that’s it folks. Thanks for reading my essay, don’t stress or obsess, for those troubled by a diagnosis of mild disease things will get better if you take your time, plan your next steps, accept your situation and stay positive.