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  • Hear rate, BP and Oxygen

    Posted by jim-dawson on June 10, 2021 at 7:38 pm

    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.

    jim-dawson replied 2 years, 8 months ago 5 Members · 11 Replies
  • 11 Replies
  • Charlene Marshall

    Member
    June 11, 2021 at 7:12 pm

    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.

  • jofac-ohandlin

    Member
    June 18, 2021 at 1:07 am

    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.

    • jim-dawson

      Member
      June 18, 2021 at 8:43 am

      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.

      • steve-dragoo

        Member
        June 24, 2021 at 7:51 pm

        @jim-dawson

        Hey Jim,

        I use VA too and have been in the Philippines for a little over 2 years (this time).  So I am currently trying to get the Pum Doc to prescribe Esbriet.  With VA you have to continue to ask or consider going to the patient advocate office usually at each hospital. I was at the Salem Virginia VA.

        I used the American Legion to file a claim for IPF among other problems and as expected IPF was denied. However, I discovered a group on YT that will help start a couple of different new claims (non-IPF). If you want more info please let me know. I sent you a friend request and we can send messages offline too.

        Stay well…

        Steve

    • steve-dragoo

      Member
      June 24, 2021 at 7:39 pm

      @jofac-ohandlin

      Hi Jofac,

      My BP is similar to yours but the heart is working harder because of the effects of PAH.  High heart rate can be related to A-Fib which does happen to some patients later in this lovely disease. There are 4 stages for IPF. It may be beneficial to understand them for guidance on what you might try to help your situation. Certain meds/supplements can affect A-Fib. Ask your doctor if it’s time for a thorough heart exam.

      Stay well…

      Steve

      • jim-dawson

        Member
        June 25, 2021 at 9:28 am

        Hi Steve,

        The VA switched me from Esbriet and Ofev to Micophenolate Mofetil. That worked for me with a significantt improvement in coughing. My son tells me to try super beets powder. All that being said, there is still no way to stop it. I’ll see if I can find your friends request. Take care and it sounds as f the VA is giving you the run around. Your VA records are available at any location. I would also contact VA in Washington.

         

        Jim

  • jim-dawson

    Member
    June 18, 2021 at 8:31 am

    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.

    • don-rose

      Member
      June 23, 2021 at 8:37 am

      Hi Jim~

      This travelscoot is a great little machine. It weighs in at 35 pounds. It’s easy to assemble. If you’re flying, you drive it right up the ramp to enter the plane. Make a few small adjustments, remove the battery and the handlers load it in with luggage, then upon arrival it’s right there waiting for you.

       

      It fits in the trunk of a compact car.  Have a look at some of these videos.

      https://www.youtube.com/results?search_query=travelscoot+assembly

  • jofac-ohandlin

    Member
    June 20, 2021 at 8:19 pm

    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

    • jim-dawson

      Member
      June 22, 2021 at 8:43 pm

      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

  • coll

    Member
    June 22, 2021 at 3:13 pm

    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!

    • jim-dawson

      Member
      June 22, 2021 at 8:58 pm

      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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