This topic contains 18 replies, has 10 voices, and was last updated by  Steve Dragoo 2 months, 3 weeks ago.

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  • #18383
     Christine Greenier 
    Participant

    My husband was diagnosed with IPF 2 years ago. He does O2 at night only and has done very well – 74 yo and works full time. His pulse has always been in the 70’s, but suddenly (we think) it is stuck at 143-6. Right now he is feeling he either has a cold or likely seasonal allergies. We plan to talk to his doc, but am wondering is resting heart rate is typically high with IPF.

  • #18384
     Mark Koziol 
    Keymaster

    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

    • This reply was modified 3 months ago by  Mark Koziol.
    • #18510
       Steve Dragoo 
      Participant

      @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

      • #18513
         Steve Dragoo 
        Participant

        @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…

  • #18435
     Laura Bush 
    Participant

    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.

    • #18461
       Mark Koziol 
      Keymaster

      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

  • #18438
     Tracie Shollenbarger 
    Participant

    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

    • #18462
       Mark Koziol 
      Keymaster

      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

  • #18519
     Suzanne R Brennan 
    Participant

    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.

  • #18520
     Mark Koziol 
    Keymaster

    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

     

     

  • #18566
     Katie Bagshawe 
    Participant

    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.

    • #18575
       Mark Koziol 
      Keymaster

      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

  • #18590
     Daniel hartman 
    Participant

    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?

    • #18593
       Mark Koziol 
      Keymaster

      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

    • #18598
       Charlene Marshall 
      Keymaster

      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.

  • #18591
     Bill 
    Participant

    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.

    • #18592
       Mark Koziol 
      Keymaster

      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

  • #18613
     Bill 
    Participant

    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.

    • This reply was modified 2 months, 4 weeks ago by  Charlene Marshall. Reason: tagging
  • #18706
     Steve Dragoo 
    Participant

    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

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