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  • Heart/Lungs Correlation?

    Posted by george-poulsen on November 1, 2023 at 12:39 pm

    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.

    george-poulsen replied 7 months, 2 weeks ago 3 Members · 5 Replies
  • 5 Replies
  • Janice Ruth Moore

    Member
    November 2, 2023 at 10:15 am

    So this is very interesting and may be of considerable help to others. It is important that we share our experiences on this Forum – I certainly value the input from everyone and am learning all the time – having only been diagnosed in May this year. A challenging situation to say the least!

    • george-poulsen

      Member
      November 2, 2023 at 1:55 pm

      If mine had been looked at a bit differently or by other people/doctors I might have avoided a whole lot of anguish a lot earlier based on experience levels and analytical ability. My doctors have been good people and well qualified, but each kind of looks at things differently, so you just never know. As I said, I still have a progressive disease with no solutions for reversal but I am putting a great deal of faith in our world’s scientific and medical community who seem to be working very hard on solutions. We all just need a bit of time and those taking Ofev and other meds may just get that time before I do :-). Its a choice thing.

      Meantime curiosity and layman research can’t hurt and folks should not be afraid to look into other resources if not finding the attention or info being pursued. PFF is one great source too!

  • Sandra Gray

    Member
    November 2, 2023 at 8:55 pm

    I really enjoyed your discussion of the possible connection between a heart issue and your IPF. It seems to demonstrate that IPF is a complicated condition and we tend to blame all our symptoms on the fibrosis when in fact that symptom could be improved by treating another condition. So glad to hear that you are improving now. It is also reassuring when we then find something in the peer reviewed literature to support our hypothesis!

    I had a similar experience after my pulmonologist chided me for refusing to be vaccinated and chose rather to follow the FLCC protocol for Covid infection prevention. It included ivermectin and some anti inflammatory supplements such as NAC, Quercetin and Vit C and D and berberine. I began feeling well after a few weeks and soon no longer needed supplemental O2. My chronic cough stopped and I can walk 3-4 miles daily without feeling breathless. Oxygen used to drop in the low 80‘s with any exertion, even walking, but now stays above 95%. Like yours, It was a serendipitous reversal of symptoms! There is so much more to be discovered about this disease.

    • george-poulsen

      Member
      November 3, 2023 at 2:09 pm

      I enjoyed reading your response. Sounds a lot like what I would really love to see happen with my own IPF Resistive issue and would be happy take even a quarter mile a day right now. Also would love to see my DLCO increase even 5% off my current 25%, that would be a good turn around and direction to go.

      My rehab from this last stent will begin in a week and I do see some increase in mental acuity, and even physical activity after 4 months now of serious weight, 22#, and muscle loss which I thought was IPF. Now I it feel this has been the heart decline after a heart event that I thought was an exacerbation. Even carefully made it up our stairs yesterday (one step at a time with O2 concentrator – L4) which I haven’t done in 4 months. Never been an athlete and just letting my body tell me when its ready to advance just a tiny bit. However any movement still brings a heavy breathing issue quickly and takes a good 3-4 minutes of no movement at all until it suddenly shifts into a more relaxed mode. Even getting out of the shower is rough and wife helps there. Doc still says get on Ofev, but for my own reasons I’ll still wait for something better and hope I haven’t made a bad mistake. Mind over body may not be a good bet at 83 and not in great physical shape-eh?

      I’d be interested to see a bit more of your chronology/timeline of IPF? development. I did all the things growing up that kids did in the 1940/50/60’s etc (Bazooka bubble gum, Tootsie rolls, ice cream sundaes and later steaks etc) and built up that cholesterol. Eventually open heart in my 60’s and a quad bypass and then stents and etc and then breathlessness took me for more heart valve work and stents/recently.

      I keep thinking my case is different and caused by one of many surgeries in my life (lungs deflated etc), or from working with cleaning solvents a lot, or a life of allergies and sinus infections that got into the lungs, or even a long life of continuing Gurd with hiatal hernia to boot, or even a low level of Rheumatoid arthritis or certain heart meds which are all documented. But doesn’t everybody do that while in some sort of denial? We tend to look for explanatory reasons that could be one time events that won’t continue every year, before accepting realities. I plateaued for two years and am waiting to see the next set of Pfft tests in February. If by any chance its still plateaued, maybe, just maybe I can turn it around.

      Meantime I’ll continue to think that my heart issue was maybe more responsible for my IPF symptoms than I ever thought. I would also encourage people to review carefully their history and whether they have availed themselves of all the medical advice that is available including second opinions which some insurers like to accept.

      ** We should all stay as informed as possible and support the progress of the research foundations who are working so hard to come up with solutions that could help all of us and PFF is certainly great contributor to this knowledge base.

      Seems like a “Life and Breath” matter to me .

    • george-poulsen

      Member
      November 3, 2023 at 2:44 pm

      Sandra, I may have misinterpreted what you were saying. Did it turn out that you were dealing with COVID and the treatments helped you through it, or are you still dealing with Fibrosis from other causes and the Covid treatment helped to deal with the Fibrosis as well? Sorry if I went off the rails sort of.

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