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    • #28830
      Jim Dawson
      Participant

      I have been on Mofetil for 1- 1/2 years. This vastly improved coughing from when I tried Esberit and Ofer and Prednisone. Two days ago I visited my Pulmonologist. He said the lungs which have blood vessels in them which gets stiff over time will not be picked up by BP ratings that we have since the lung blood vessels are operating separately from the cardio blood vessels. That is the first time I have ever heard of that. Has anyone else ever hear of such a thing. BP ratings may be normal, but that doesn’t stop your oxygen levels from dipping and raising your BPM. When the BPM gets too high then that will raise your BP, which in turn leads to heart failure, etc. I hope I didn’t confuse anyone.

    • #28837

      Hi @jim-dawson

      Thanks for writing and sharing this important discussion with us, really interesting…
      I can’t say I’ve heard of this, but I see my Cardiologist very sporadically. Did your doctor explain what that might mean in terms of a diagnosis or how you live your life (ie. with hypertension, or could it be PAH)? Just curious what it was he was searching for when discovering and sharing this information about BP.
      Char.

    • #28925
      Jofac O’Handlin
      Participant

      Hi Jim and Charlene,

      I will begin by saying that I do not know what I am talking about! Jim is right. Yes, it is not generally known, but seemingly there are several ways to measure blood pressures. One we all know about,  the peripheral bp measured with the cuff on the arm.

      The one less known, and of interest to us, is the pulminary pressure as driven by the right ventrical of the heart. My understanding is that as our lungs ability declines, the right ventricle works harder to  drive a greater volume of blood through the lungs.

      This demand may / will utimately cause deformation and damage to the right ventrical, presumably increasing the risk of heart failure.

      Whilst my blood pressure, as an ‘ex-runner’ is excellent for a 79 year old (118 / 75 at rest) I have no idea of the pulminary pressure, as this is not easily or routinely measured. It is the hidden side of our condition.

      One notable observation is not my routine bp readings which have remained good, but my heart rate. Over time my resting rate has increased by between 30 and 40%. It makes me think that maybe I shouldn’t try so hard to keep going …. puffing and panting? Maybe just nice and steady!

      Regards to all in our community,

      Joe

      Whether this is the ultimate cause of death, or other organ failure is the question.

      • #28936
        Jim Dawson
        Participant

        Well BP was normal, but BPM was high as well as oxygen dropping into the 60’s. However, if oxygen stays too low for too long BP will go up. So the first thing to monitor is oxygen. The VA doctor had no other solutions for me and decided to see if there was an alternative to current medications. I have not seen a cardiologist as of yet. This information came from the Pulmonologist. I won’t know anything more until after August 20th or so. And they may not take me in as a patient for clinical trials based on their findings.

    • #28935
      Jim Dawson
      Participant

      Thank you for verifying what my doctor alluded to. I do think following your beats per minute and oxygen levels gives me a better idea of when to sit down. Next on my agenda is to find a lightweight electric wheel chair. The VA has some, but I would have to buy a trailer hitch or a Van and have it adapted to what ever I buy. I just want a lightweight chair under 50 lbs. that I can put into my trunk that is electric. I am scheduled to go to KU medical center through the VA in August. Supposedly a clinical trial, because the VA has no more options. Thanks again for answering my thoughts and concerns.

    • #28942
      Jofac O’Handlin
      Participant

      Hi Jim,

      I woke up this morning with a discomfort in my chest, above and to the right of my left nipple and it lingered . I have occasionaly felt it over the yrars but it did not persist.

      That got me to look up pulmonary hypertension,  and came across this site, erj.ersjournalx.com  . It is the European Respiratory Journal.  The title: Exercise Induced Pulmonary Hypertention, At Last. Article dated 2015 … by memory!

      It refers to the invasive nature of measuring the pulmonary arterial pressure (PAP) so a neglected (my observation) area of research. The abbreviation mPAP is used, mean pulmonary arterial pressure, with the added -CO for cardiac output. This then related to work load, exercise related induced pulmonary hypertension.

      It states that attention is now turning to the right ventrical,  after more than half a century of scepticism, and also ‘exercisd induced pulmonary hypertension is finally coming out ‘.

      For us the reference to ILD, and the link sith the volume of blood flow (litres/min) against pressure (mmHg), and the comparison with healthy individuals.

      The remark which I an sure we can guess at: ‘Exercise induced pulmonary hypertension is associated with decreased exercise capacity and poor prognosis.

      Sorry, but we know the journey that we are on. I imagine the consultants and IPF staff really do not wish to tell us the details or mechanisms of our decline. About 2 years ago the consultant vaguely commented about right ventrical changes. As I was still doing slow running training twice per week, I thought that my traction engine of a heart (resting rate 48 to 50) was invulnerable. I do not think that now.

      If this sounds pessimistic,  I am not! I have been surprised that I have not become depressed …. don’t understand why not!

      I admit to being less than happy  that I am limited in the diy works that were a usual part of life in retirement.

      All the best to you, Jim. Also to the rest of our fraternity,

      Joe

      • #28979
        Jim Dawson
        Participant

        Sorry Joe, but we do play the cards we are dealt with. I know life is nothing not without its trials. In some ways it is bitter sweet. There are many, many places I would have liked to have visited in this world, but not possible. On the other hand I am one of those who believe there is a brighter side after death. That doesn’t diminish the trials of life, but in believing the way I do, gives me the strength to move on, but not always without feelings of sorrow. I hope others will read your article, to help them understand that too much exercise can damage your health, just as little or no exercise. I pay a lot of attention to oxygen levels and my duration. Take care to you and all that are looking for answers.

        Jim Dawson

        • This reply was modified 3 hours, 55 minutes ago by Jim Dawson.
    • #28973
      Colleen
      Participant

      I have IPF, going on 5 years.  In Dec, 2019 I was diagnosed with bladder cancer and prior to surgery, they did an echo to make sure that I could survive the surgery.  I refused to allow them to put me under as my current lung function at the time was 42% and so we opted to remove the tumors with a spinal.  During the echo it was determined that my heart was struggling.  Mind you I was only on o2 for exertion and sleep.  After adding another “gist” to my collection (cardiologist) and after a right heart cath, it was determined that the right side of my heart was struggling to pump the blood back to my lungs, so I was put on Sildenafil.  So there are BP markings for your heart different.  Earlier this year after another heart cath it was determined that my heart was still struggling and my lung function is now at 39%.  Because of my IPF I now have PAH.  My cardiologist suggested I go on Tyvaso, which is inhaled and I was hesitant because I didn’t want to inhale anything into my already screwed up lungs.  He agreed to wait for me to talk to my pulm doc.  My pulm doc is really involved in the PFF and said we should give it a try.  I’ve been on Tyvaso (another really really really expensive drug) for almost 3 months.   Tyvaso is taken 4 times a day and you work yourself up to 9 breaths each time.  I’m at 8 as I get some of the headache side effects.  I go to see my pulm doc the end of July, so I’ll be interested to see if it’s helped as they say that people with PAH and IPF could benefit from it.  Stay tuned!

      • #28983
        Jim Dawson
        Participant

        Hang in there Colleen. Looks like you too have run the gambit of life. Just knowing you are not alone is not always comforting, but it looks to me you are keeping a positive approach. This war against IPF is just that, a war. I hope you are surrounded by people who understand what you are going through.

        Jim Dawson

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