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    • #17840
      Colleen Steele
      Keymaster

      I have read several of our member’s previous posts in which they mention having a pacemaker. For some it might be because of damage that their heart has suffered due to PH and for others it’s due to a co-existing condition.

      When my son was in heart failure and waiting for transplant in the hospital his doctor was in the process of scheduling a pacemaker for him but he ended up getting his transplant before it happened. He was really upset about needing a pacemaker and it took a lot of conversations with his doctor to convince him that it would help.

      I’m curious how much a pacemaker has helped PH patients who have them and if you have run into any complications with it? Why do you have a pacemaker, is it due to the progression of PH and the effects it has had on your heart, or is it for a co-existing disease?

    • #17847
      Brittany Foster
      Keymaster

      Hi Colleen,
      I had a pacemaker placed when I was 21 years old. They noticed some skipped and irregular beats when I had an EP exercise study. The doctor gave me a 30 day holter monitor that was one of the old school ones with the strap around the waist and the 4 leads that had to be put on and changed every day. (not like the ones that are barely visible now) . I wore this for 30 days and they found that I was having at least 10 second pauses in between beats. Come to find out, I have a condition called sinus node disease and tachy/brady sydrome. I was getting more tachy eipsodes when I had my pacemaker placed before I got put on oxygen therapy. The symptoms I was experiencing before getting a pacemaker were : Light headed, syncope/ pre syncope, fatigue, headaches. The pacemaker really has helped me a ton with my fatigue and my doctor is able to change the settings on it so that my heart rate responds appropriately to exercise which helps improve my blood flow and allows me to have better exercise tolerance. At first I was so scared and was not expecting any of this to happen, but I’m so thankful it was caught and I am monitored every 4 months by my EP team to have pacemaker checks.

      • #17860
        Colleen Steele
        Keymaster

        Brittany, from what you have shared and what I have heard from others, a pacemaker really made an improvement in quality of life. My son also had Long Q-T syndrome which worsened with the heart failure, and between the two and the PH he started passing out, which except for two occasions, was a PH symptom he avoided through his 5 years of the disease. In order to keep him strong for transplant the doctors felt a pacemaker would have helped him a great deal.

        He was so upset because he just wanted to get his transplant before he got worse and before he would need something new, like the pacemaker. Also, keep in mind he was 14, he thought pacemakers where only for the elderly. We had just finally got him to give in to the idea when he got the call.

        I’m glad the pacemaker is helping you and gives you a little more strength for activity. I had no idea the settings could be changed. That must really help!

        • #17869
          Brittany Foster
          Keymaster

          Colleen,
          I remember that “pacemakers are only for older people” feeling. When I got my pacemaker it was the first time in my life up to that point that I was reminded that I had congenital heart disease that would never exactly be “fixed”. The hardest part for me after getting it placed was knowing that this was going to be something that I would have for the rest of my life. Sure, compared to all the other major surgeries, the pacemaker would seem like “no big deal” for others, but it’s scary in its own way. I used to worry about it malfunctioning, shutting down, etc. My doctors say my will be replaced in about 3 years. I don’t even want to think about how little energy I would have if I didn’t have it in. At least it helps me pick up the pace in life (literally)

    • #17856

      Hi Colleen,

      I don’t have a pacemaker but they are talking about it. I just recently had an ablation for atrial flutter and I may also have episodes when my heart rate drops during walking. They said they may not be able to do an ablation for the left side to control the sudden drops. They are now talking about a pacemaker. It’s my understanding that you can no longer have any CT scans or MRI’s. Does that become a problem? Is there anything else that you find with having a pacemaker?

      • #17858
        Brittany Foster
        Keymaster

        I have a Medtronic pacemaker that is dual lead so it goes in the atrium and ventricle. My pacemaker is compatible with an MRI. CT scans don’t bother it at all, but if your pacemaker is compatible with an MRI(which you could request it to be compatible and advocate for that) then a representative from the company that is trained with programming them comes and changes the settings so it is safe for an MRI and doctors monitor you while it is in a different mode.

      • #17861
        Colleen Steele
        Keymaster

        I hope if you proceed with a pacemaker you find it as helpful as Brittany has. I see she answered your question about CT scans and MRI’s. That is a concern I hadn’t considered. MRI’s and CT’s are important so it’s a relief to hear that there are compatible pacemakers, as Brittany mentioned.

    • #17864
      Jen Cueva
      Moderator

      Wow, Brittany, thanks for the education on the pacemakers. I never even thought about being compatible with MRIs and CT scans. I do remember the older pacemakers were not compatible.

      Great tips for those who may need a pacemaker put in.

      • #17870
        Brittany Foster
        Keymaster

        Glad I could help! I would always suggest to do your research and ask your doctors these questions. The pacemaker reps are also so knowledgeable about the devices and the different programming settings they offer. I would look into all different options with your doctors and team to find the best fit for you, your life style, and the testing you may have to go through.

    • #23793
      Stephanie Mitchell
      Participant

      I have a Boston Scientific dual chamber pacemaker that’s MRI safe. It has an extended battery that as of my last check a couple of months ago, is good for another 11 years. My low rate limit is 70 and the upper tracking is 130.

    • #23807
      Brittany Foster
      Keymaster

      @stephanie mine is programmed to increase my heart rate for me when it detects exertion. Sometimes it is pretty sensitive and is set to pick up on a small amount of movements so sometimes I can feel it kick on or pick up the pace of my heart for me even if I am just rolling over in bed. At first this bothered me but then I got used to it! Is yours programmed like this for your CI (chronotropic incompetence)?

    • #23816
      Stephanie Mitchell
      Participant

      Brittany, I had my pacemaker implanted in 2016. It’s a Boston Scientific dual chamber with the extended life battery that is good for around 15 yrs. I’m 99% atrial paced. It does have the accelerometer and also a minute ventilation sensor that can sense when you are breathing faster and/or deeper than normal and will accelerate the heart rate in addition to sensing movement. My EP said, it’s the only one on the market that has both sensors. It took some tweaking of the settings, but I think they have it set on a good sensitivity.

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