• mark-koziol

    Member
    April 14, 2019 at 6:53 am

    Hello Christine, I can only speak from experience. Before my transplant I did not experience a high resting heart rate. However, as soon as I stood up, my heart rate immediately shot up into the 100s. My resting heart hovered around 65. I think this question will be best answered  by your physician. You are correct something could be contributing to the elevated heart rate. When I get sick, it often happens to me. I would contact his physician and relay those numbers to him. Mark

    • steve-dragoo

      Member
      April 16, 2019 at 8:54 am

      @cgreenier

      Hi Christine,

      My heart rate had been climbing during resting for several months and jumping high during reasonable exercise. I believe that is a symptom of pulmonary hypertension – common with IPF. But I started researching various supplements and take a few every day.

      The one that has surprised me nattokinase (think Japanese natto but without vitamin K), has helped to reduce my resting heart rate to the low sixties even after eating. Many times when I test my O2 the pulse is in the high fifties. Haven’t had a pulse like that since I was young. There may be other supplements that help but I noticed the biggest improvement when I started the natto a couple of months ago…

      Steve

      • steve-dragoo

        Member
        April 16, 2019 at 8:57 am

        @cgreenier

        PS – I should have added when I first get up and walk to the living room to check my O2 the rate is always in the high eighties or low nineties for 30 seconds or so and then comes down…

  • laura-bush

    Member
    April 15, 2019 at 6:48 am

    Good morning!  I have found that my resting heart rate is usually around 94 now, it used to be about 70. I think our hearts have to work harder for us to breathe. My doctor told me that is also what causes the weight loss. I’ve lost 20 lbs in the past year and a half, and I was thin to begin with.

    • mark-koziol

      Member
      April 15, 2019 at 9:29 am

      Hello Laura, I think you are correct about the weight loss. Your system probably thinks it is in a losing weight mode because your heart rate is higher. Your heart is working harder because there is not enough oxygen supplied to your lungs. Thank you for sharing Mark

  • tracie-shollenbarger

    Member
    April 15, 2019 at 7:18 am

    Its important not to let the heart rate above 120s to 130s go without medical advice. You heart is beating like your exercising and it needs to rest at some point. I sure would let someone run some tests sooner rather than later.
    Tracie Shollenbarger

    • mark-koziol

      Member
      April 15, 2019 at 9:31 am

      Hello Tracie, thank you for your input. It is too bad most of us had to endure this problem. When I would stand up, my heart rate would skyrocket into the 100s. Thank you Mark

  • suzanne-r-brennan

    Member
    April 16, 2019 at 9:24 am

    My heart rate has increased, both at rest and while exercising. I am around mid-70’s at rest and it can go as high as 145-150 during a vigorous walk or weight lifting. My pulmonologist said that Esbriet can do that.

  • mark-koziol

    Member
    April 16, 2019 at 10:18 am

    Hello Suzanne, I just got done reading Genentech’s page describing the side effects of Esbriet and increased heart rate is not one of them. If you click on the Genentech highlighted in blue it will take you to the support page for Esbriet. There is also a number to call if you have any questions. Your heart rate seems to resemble mine before transplant, my heart rate would jump as soon as I stood up. One of the reasons your heart rate is jumping is because the fibrosis is restricting your lungs and therefore your heart is required to work harder. You are also working out vigorously so that is contributing to the increase as well. Keep us updated. Mark

     

    Genentech

     

     

  • katie-bagshawe

    Member
    April 17, 2019 at 6:17 pm

    It’s interesting to hear your thoughts on this as I never really assessed Dads heart. He did lose a rapid and significant amount of weight in a short period of time due to pneumonia, and though he did regain muscle strength back, he never really recovered any weight despite bumping his calorie intake up. They did assess his heart quite heavily during the transplant assessment and everything came back positive which was a shock as has been mentioned, a lack of oxygen can put quite a strain on the heart muscle and lead to complications outside of PF. Even in his final days his heart was beating strongly so despite having had a heart valve replacement about ten years prior, his heart managed to support him well despite his lungs. I would say that if you have any concerns then chat with your Doctor and perhaps assess your resting pulse rate regularly just to see if there are any changes over time. Thanks again to all for sharing your knowledge, this has been really interesting to view the overall perspective of how the damaged lungs can put strain on other areas of the body.

    • mark-koziol

      Member
      April 18, 2019 at 7:10 am

      Hello Kate, thanks for sharing. I needed to lose 80 pounds and I think having my heart rate race into the 100s actually tricked my body into thinking I was doing cardio. It took me about 10 months to lose the weight but I also did phase 3 pulmonary rehab and was careful on my diet. My heart was perfectly fine and was better after losing weight as I went through periodic echocardiograms and each time my ejection fraction was better. Like you stated your father had a strong heart just as many pf patients do. Even during the transplant surgery the surgeon was extremely happy he did not have to place me on the heart bypass. Thank you again. Mark

  • daniel-hartman

    Member
    April 18, 2019 at 1:08 pm

    Just heard from my dr.,s nurse  seems my liver enzymes have gone down,but still high, have to stay off esbreit till next lab work, sometime next week. Actually fell better not taking it  .anyone had simular experience?

    • mark-koziol

      Member
      April 18, 2019 at 1:55 pm

      Thanks Daniel for the update.  I too had to go through periodic liver tests when I was on OFEV. Hopefully they can put you or even better yet you remain stable without the Esbriet. Thank you Mark

    • Charlene Marshall

      Member
      April 18, 2019 at 6:53 pm

      Hi Daniel,

      Thanks for writing, although so sorry to hear you had elevated liver enzymes initially. Its good they are coming down, and I have heard of folks feeling better GI-wise once the Esbriet is stopped. I am not on Esbriet, but know sometimes when a rough medication is stopped, the side effects improve and we feel better. Hopefully when they start you can on Esbriet it is a slow improvement in the dose so the side effects don’t get too difficult again.

      Take care,
      Charlene.

  • ramblingolfer

    Member
    April 18, 2019 at 1:41 pm

    I too am experiencing a rise in my pulse rate. It has always been 72 and is now steady at 85 resting. We won’t talk about how it goes crazy when I move around. I am thinking it is the natural progression of the disease. I will be going off of esbriet at the end of the month as in my final stage there is little point in taking it, so I will see what the difference is then. Weight loss is definitely an effect of the disease as I lost 37 pounds during the process. although surprisingly I gained 4 ponds back. I didn’t know I could do that. I drink an ensure daily to combat brittle bones. My hospice nurse said the top right of my lung sounds fine so I guess that is what is sustaining me for now.

    • mark-koziol

      Member
      April 18, 2019 at 1:52 pm

      Bill, it saddens me to hear you going through this. I’m happy that you your knowledge to others. It is respectful of you to do this. I am sure I am not the only forum member who feels this way. Best wishes. Mark

  • ramblingolfer

    Member
    April 19, 2019 at 2:29 pm

    hi @mark-koziol ,
    Don’t be sad for me as I have a positive attitude because it is what it is.
    I just take one day at a time and work through those things that need attention to have the best quality of life I can without dwelling on the disease. But thank you for your concern. I have a great support group in my family and friends.

  • steve-dragoo

    Member
    April 23, 2019 at 11:14 am

    Hi All.

    My rate increased some every month until a couple of months ago – resting hi 70’s low 80’s and as high as 135.  I started taking nattokinase and remain very surprised to see my resting rate in the low 60’s, hi 50’s – haven’t seen that since I was young.  It is initially high when I first get up but settles down fast too.

    Steve

  • tammyjbell1972

    Member
    May 18, 2021 at 12:44 pm

    My HR elevates only when I stand up and walk. It reduces quickly when I sit. Sometimes to low 50s. My oxygen goes up when i stand and walk. The only time it has gone down is during a tredmill tsst.

    • christie

      Moderator
      May 18, 2021 at 5:44 pm

      @tammyjbell1972 Everything you described is normal. A slight dip in O2 sat while exercising is normal, and with PF your oxygen saturation tends to run low even if you aren’t doing anything strenuous. Low 50’s is a healthy resting heart rate. It is normal for it to go up into the 100’s when you stand and walk. Fibrosis tends to cause a higher than average heart rate.

  • tammyjbell1972

    Member
    May 18, 2021 at 12:44 pm

    Can Pulmonary Fibrosis cause high and low heart rate????

    • tammyjbell1972

      Member
      May 18, 2021 at 10:39 pm

      @christie-patient

      It is strange to me because i don’t ever feel breathkess. I mean i feel likeni breath heavier at times but never breathless. My heart rate goes up after eating. It feels like i cant take a deep breath. My symptoms started suddenly 7 months ago. I was put on a blood thinner and after the 2nd week i was sitting on the couch and my heart started beatinh so fast and so hard. 2 days later i felt shortness of breath. My chest felt tight. Afyer about 2 months the tightness went away and i dont feel my heart beating fast onky after eating. I know.its beating fast because of my watch. The shortness of breath has gotten a lot better just that deep breath is sometimes hard to take. Ive had 2 spirometry tests done. Tjey had me run up and down 2 flights pf steps and my 02 stayed at 95%. I do not have a cough. I jave been told all 3 cts i have jad done ove the last 7 months says my lungs are great. I have had a VQ scan and an xray as well. Im so confused

  • ben-robinson

    Member
    May 21, 2021 at 7:23 am

    Go see a Good cardiologist. I take Sotalol And  Metoprolol for that to slow it down. Good drugs with no side effects  If you have an arrythmia or SVT event they may put you on Elequis, a blood thinner also a good drug to prevent stroke.

    That’s me anyway. But the PF does affect the heart which I am living proof

  • tammyjbell1972

    Member
    May 26, 2021 at 11:28 am

    How long did it take for a diagnosis? What was the test they jad to do to diagnose PF? I see so many tests they can do. What are my chances of having a transplant if needed?

    • tammyjbell1972

      Member
      June 7, 2021 at 6:51 pm

      Was your heart rate high during rest and exercise or walking???

      • Charlene Marshall

        Member
        June 8, 2021 at 10:43 pm

        Hi @tammyjbell1972 : who are you directing your heart rate question to? I can tag them for you in hopes to get an answer to your question.

        Take care,
        Charlene.

  • Charlene Marshall

    Member
    May 26, 2021 at 9:21 pm

    @tammyjbell1972

    Hi Tammy,

    It took me 13 months to get diagnosed with IPF and they ran a myriad of tests, but only after it was detected my 02 readings were low. They never checked this in the 9 months I was seeking answers at the doctor’s for shortness of breath; they only checked it when I went to an urgent care clinic. Not sure if this helps?

    As for transplant, it really depends on so many factors. It’s worth it to start that conversation sooner than later though with your physicians as preparing to get listed and doing research into the facility you want to be transplanted at or who accepts your case, can take a lot of time. Hope that helps.
    Char.

  • tammyjbell1972

    Member
    June 3, 2021 at 5:18 pm

    I noticed my heart rate goes up even if I just roll over in bed. Or just cough, or move a little. I can be sitting and if I even move my leg it goes up. It comes back down quickly when I stand still or sit. It goes down to as low as 54 sometimes. I feeling like flip flops as well. My pulmonologist says everything is normal. What is normal? What is the most important numbers on a PFT test?? DLCO?? The only abnormal thing I found was RV/TLC. The predicted was 35 mine was 26 my pulmonologist said that means I have a great diffusion rate. I dont understand the numbers nor %.

    • steve-dragoo

      Member
      June 3, 2021 at 7:02 pm

      @tammyjbell1972

      Hi Tammy – I can’t help much with the numbers but there are a couple of videos on YT that have some insight.  It sounds similar to me and I was diagnosed with pulmonary artery hypertension (PAH) that apparently comes with this lovely disease (IPF).

      I am stuck out of the USA so no meds for PAH however I do take a lot of supplements that have helped overall but I have been taking supplements for a long time and try to keep up to date with any new insights. So if you have any questions I can help you with, please ask.

      Stay well,

      Steve

    • tammyjbell1972

      Member
      June 7, 2021 at 6:50 pm

      When I hear about shortness of breath, I always ask, what people mean by that, exactly? Like does it feel like omg I’m breathless? Or like I can’t take a deep breath? Or combination? And do most people feel like I have to stop to catch my breath? I know all people are different and it progresses differently but do most find it hard to breath almost from the beginning?? I guess it’s hard to even look up breathlessness because it is described in so many ways. But I most often hear people say I am out of breath, or I have to catch my breath or even I don’t do much because I can only walk so far before I have to stop to catch my breath.

    • tammyjbell1972

      Member
      June 30, 2021 at 5:45 pm

      Charlene, were your 02 stats low all the time? Sitting, walking, moving? Sleeping? May I ask how low??

      • Charlene Marshall

        Member
        July 1, 2021 at 10:08 am

        Hi Tammy,

        Thanks for your note! When you say “were my sats low all the time”, do you mean before I was diagnosed or since I was? One of the biggest indicators something was wrong when I was 28, was when I went to the urgent care center and despite being symptomatic for 9 months and being told I had every other kind of lung disease (chronic bronchitis, an infection, asthma, etc); that was the first time my 02 saturations were checked. They were 92. I thought that was good because a) I knew nothing about lung diseases and b) I compared that number to a grade academically and thought it was good…. I was sent to the ER that night. Not sure if that helps?
        Char.

  • tammyjbell1972

    Member
    June 6, 2021 at 7:37 pm

    Do heart rates go up and down with IPF?? Example: my HR only goes up when I move, stand up and walk. It goes back down immediately when resting or standing still. Down to as low as 54 sometimes.

    • steve-dragoo

      Member
      June 6, 2021 at 9:04 pm

      @tammyjbell1972

      Tammy – as we get farther into this disease many patients develop PAH which usually affects heart rate response and others may end up contracting AFib further adding to the side effects. I have both and my heart rate sounds similar to yours.  Your doctor should be alerted to your HR and go get tested…

      Stay well,

      Steve

  • tammyjbell1972

    Member
    June 7, 2021 at 12:05 pm

    My symptoms started suddenly in September. Since then I have had 3 CTs, a VQ scan, Heart monitor, 2 echocardiograms and a tredmill test. There is absolutely no signs of PAH. I have seen 3 cardiologist to rule it out. My rapid heart rate started and then 2 days later shortness of breath. My heart rate is fine unless I am walking or standing up. I have no other symptoms. Just the feeling of the not being able to take a deep breath and heart palpitations. I think they have a lot to do with having taken a blood thinner for 6 months. It has affected my BP. Plus my cardiologist said that I did not have significant regurgitation in any of my valves which is a good thing because normally if you have significant regurgitation it means a big possibility of PAH. Also most would find thier heart rate elevated while resting as well and having difficulty lying down. I am most sure I dont have PAH. Although I am worried about my lungs

  • dinyar

    Member
    June 8, 2021 at 4:41 pm

    I am new on PFNews. I just saw this today 6/9/2021. I would like to put my two cents in. Those who are concerned about their heart or have poor heart functions should look into the following three supplements:
    1. Hawthorne Berry Extract Standardized.
    2. Magnesium Taurate, or Mag. Citrate, or, Mag. Bisglycinate but the Mag. Taurate is best.
    3. Arjuna – Ayurvedic herbal supplement.

    No. 1 and 2 above will improve heart functions. Take it separately as per label.

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