I’m surely not a doctor and do not have all the answers but I want to review some events and hope it might ring a bell for someone. Ten years of x-rays and cat scans show I’ve had scarring for a long time and have slowly deteriorated. Officially two years ago they said IPF resistive type and no cures…take Ofev. For a variety of reasons, I have not done that at age 83, and so far still stand by that decision waiting for a cure rather than therapy. I continue to look for other answers that I may never find… or maybe.
Meantime my persistent coughing has continued to strain every muscle in my body, and weakness and 22# weight loss, huffing and lots more. But my progress to Inogen G5 and L4/5 settings has kept me going day and night 24/7. I feel tethered but have simply learned to live with it and am at least mobile.
As of May 30<sup>th</sup> this year, in declining status but mobile, I went to bed feeling badly and then woke up later coughing as usual, very slight temp 103 and feeling whipped, and walking with compressor to the bathroom felt the usual very painful thighs and back of neck and wondered what else. Then I began to think maybe this is what they call an exacerbation and I’m in for trouble. After a couple days and for the next three months feeling whipped and breathless and coughing I never left the house and my wife took really good care of all things and I read a lot of newspapers researched a lot of stuff and just continued to feel weak if moving. My friends were sure I was on last legs as did I and it was a bit scary. And my third well-credentialed Pulmonologist said yup’ your DLCO is down along with FERC? Let’s see you in another 6 months.
However, I then tried my 4<sup>th</sup> Pulmonologist for answers I wasn’t getting elsewhere and he put me on Azythromycin maintenance dose every other day and my cough started to decline………… but wait! It gets better. Then 3 weeks ago my 4th Cardiologist (an older/new entry to my clinic) said its time for your next review. You see I had a quad by-pass in 2003 that went well, and later had some valve repair and had a stent put into a descending artery 3 years ago. So, check-ups. The echo cardiogram was preliminarily ok…………but later the Nurse Practitioner saw something in that echo cardiogram that did not look exactly right along with my continuing symptoms. So, the Doctor wanted an angiogram and ended up putting in another stent in another descending artery. Wow! All I can say is my life has changed from a downward slope, and 22# lost in three months and incessant coughing and pain to a slight turn upward minus a lot of hinderances but still using oxygen 24/7 for now. Yes, the IPF is still here but symptoms are much more tolerable and just maybe I can stick around just a bit longer to see if the next med may be a winner for many of us? The doctor said “you had a heart event”.
Just when things were looking pretty dark, I/we/they, stumbled onto something that I had not thought about for a number of years because it had been taken care of – or had it? Maybe we should take a second look at some of those things that seem to share really similar symptoms but might have been overlooked because of our pursuit of the so obvious ones first?
With the above in mind, I began to search for connections between failing heart (clogging arteries) and dropping DLCO pressures in the lungs. After many dead ends, I found an article in the medical journals (ERJ) of the UK where the authors found a correlation between the DLCO and declining heart function and published an open research subject titled “Low Dlco predicts all-cause hospital admissions in patients with reduced left Ventricular ejection fraction or Diastolic dysfunction”. https://openres.ersjournals.com/content/6/2/00095-2020 It’s a short article but makes me wonder whether the chicken or the egg came first and whether the reduced ejection from the ventricle might be a contributor to the inadequate or declining DLCO or vice versa.
This commentary is longer than thought but maybe someone else will see what I do and wish to pursue it as well. I don’t want to push false hope to anyone, but I will keep on looking. I just hope all will turn over every stone because you never know what you’ll find. I wanted to share my thoughts with all and if done incorrectly I apologize.
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