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Does anyone have a Pacemaker?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sushi, Jul 20, 2018.

  1. Sushi

    Sushi Moderation Resource Albuquerque

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    I took a cardiac treadmill test yesterday and qualified for a pacemaker. So now I need to decide whether to get one implanted. It might well improve stamina--less huffing and puffing and collapsing--as it should improve blood flow and oxygenation to the heart and brain. I qualify mainly because I was unable to raise my heart rate enough to support normal activity.

    Does anyone have experience with one? The one my electrophysiologist would implant will also attempt pace you out of premature atrial contractions--the most common type of arrhythmia and one that most of us get--that weird feeling when the heart seems to skip a beat or do a double beat. :confused:
     
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  2. valentinelynx

    valentinelynx Senior Member

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    No personal experience... I did end up with a cardiac ablation because very frequent PVCs were causing me to have an effective pulse rate in the 30's. What I do know is that the patients I've met who have had pacemakers implanted (usually for sick sinus syndrome, in which the pulse often drops too low to sustain activity) are much happier afterward!

    Oddly, after my PVCs were eradicated, I started having more PACs. One of my doctors says these things are more common in patients with EDS.
     
  3. Sushi

    Sushi Moderation Resource Albuquerque

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    My other choice would be an ablation (for Afib) but I am concerned about the recovery of an ME/CFS patient. How did your recovery go and have you heard from other patients who had ablations?
    That is interesting as I also have EDS.
     
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  4. Moof

    Moof Senior Member

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    Our family has bradycardia, and a number of the older generation needed pacemakers by the time they got into their 80s. My auntie, the only one who also had ME, found the implantation straightforward and felt much better once it was fitted. She was 87 when she had it done – she'd tried to avoid it for as long as possible because she was worried about the procedure, but she was absolutely fine. (We also all have EDS!)
     
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  5. valentinelynx

    valentinelynx Senior Member

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    Sorry for delay. My recovery was fine... after the first few hours. Funny story (not at all at the time!). Usually these things are done with sedation, and take about an hour, maybe? That's what I was expecting when I came to the hospital. However, the spot in my heart triggering the PVCs was in a very tricky spot (which was why I was seeing this hot-shot doc in the first place, so I should have known it wouldn't be so simple...). Anyway, my procedure was done under general anesthesia with a special kind of ventilator (a type of oscillating vent that gives the patient fast shallow breaths) so that my heart would move as little as possible during the case. Also, because of the tricky location, it took 5 hours! That wouldn't have been such a big deal, except, for this case, I had to be completely flat on my back. Normally, a pillow would go under the knees to relieve back strain. So, after lying flat on a metal table for 5 hours, I woke with a horrible back spasm. OK, still wouldn't have been a big deal, except... because the procedure requires making a rather large hole in the femoral artery—I wasn't allowed to move my legs or roll over for something like 4 hours! The pain from the spasm was excruciating. And, I take huge doses of pain medication on a normal day. Remarkably, my husband and I were able to talk the recovery room nurse into getting me almost enough pain medication to make a small dent in the pain. But, after I was moved out of recovery, no more, because "the procedure shouldn't be painful." The procedure itself didn't cause the least bit of pain, just a stupid muscle spasm! When those 4 hours were up, I said, "Can I move now!" As soon as I heard a "Yes," I turned on my side. Problem solved!

    Anyway, I was fine after that. I don't recall having much trouble recovering from the anesthesia. I've had general anesthesia a few times since being ill, and done fine. The worst was this February, when I had a port placed. For some stupid reason, the anesthesiologist (seemed so young maybe she'd just finished her residency?) gave my Haldol. WTF? Apparently, some are using this now to prevent post-op nausea. But I'd told her in advance I've never had an issue with post-op nausea! For days after the procedure, I couldn't figure out why I was so groggy, so out of it. Then, I remembered asking the recovery nurse after the procedure what I'd been given during the case, and hearing "Haldol" (it messed up my memory for days!).

    Sorry for long story. I guess I'm fortunate that I don't have issues with anesthesia. Maybe being an anesthesiologist myself inoculates me? :p Don't let my story scare you away from an ablation! My experience is far from usual. However, I don't know others with ME/CFS who've had ablations. Personally, though, I'd try the ablation first before the pacemaker, if that's an option. A pacemaker is great if you need it, but it is a permanent foreign body that requires monitoring and maintenance.
     
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  6. Sushi

    Sushi Moderation Resource Albuquerque

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    And I am sorry for the delay in replying to you. I have replied by PM--thanks so much!
     
  7. Sushi

    Sushi Moderation Resource Albuquerque

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    I had the pacemaker implanted yesterday. It was fascinating to be awake and a part of a high tech medical procedure. I had conscious sedation (fentanyl and versed) and this allowed the electrophysiologist to tell me each step that she was taking and get feedback as to whether I was in pain. It took an hour and 45 minutes, the team of about 8 was totally great and the pain today isn't bad (tylenol and ice).

    I was at the hospital for 10 hours because they kept me in recovery long enough to give IV meds (2 different antibiotics and a pain killer), give me lunch and slowly test my recovery. I came home with a packet of information and a wireless "spy" that will transmit the data from the pacemaker.

    The interesting thing? As soon as my EP hooked it up I felt much better! I had been getting frequent pauses and my HR was always in the 40's. Fascinating that I could feel the difference instantly.

    I'll be out of it for a while (and sort of one-armed as the muscle heals) but wanted to report in on this procedure. Can't thank my EP, the hospital staff and my wonderful neighbors enough for all the help they have given. :):thumbsup:
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Hi Sushi, I was just curious, with the fentanyl and versed, would you say that this combo of meds allowed you to stay completely still for a procedure (that obviously required great precision!) yet at the same time, you were awake enough to communicate with the doctors and never lost consciousness?

    Also, was an actual anesthesiologist or anesthesia nurse present for the entire procedure to monitor the fentanyl and versed?

    That is amazing news! Yay! :star::star::star:
     
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  9. Sushi

    Sushi Moderation Resource Albuquerque

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    Yes, I could stay completely still but they had positioned me in a way that my arms were cradled so that they wouldn't move. For a colonoscopy you lie on your left side with your knees drawn up so that is also a fairly stable position.

    I was totally awake though slurring my words so I guess I was a bit "drunk." I could hear every word they said (and they were very careful not to use words that might alarm a patient), and my EP talked me through every step and asked for feedback re: what I was feeling. Though I was completely awake I was in recovery for about 5 hours but it wouldn't be so long for a colonoscopy. They had to give me various IV drugs in the recovery room, feed me!, go through all the discharge instructions, order oral meds to be delivered to the room (for me to take at home) make sure I could walk etc.
    No anesthesiologist though there may have been a nurse anesthesiologist (I had my head in a tent so not sure who was doing what). There was a monitor screen about 6' by 3' as they had to have real time visuals for placing the leads in the heart.

    I'm sure my EP did the local injection (that was the only painful thing--though you won't have that) and I could hear her telling someone to give more fentanyl once. It was nice to be awake because my EP was very reassuring as to how things were going.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and that all makes sense. It sounds like they really do not need Propofol for a lot of these procedures and Fentanyl & Versed are enough.

    I was just curious how they decide which procedures require an anesthesiologist (doctor or nurse) to be present.

    Your EP sounds absolutely amazing! We need to clone her ;)
     
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  11. Sushi

    Sushi Moderation Resource Albuquerque

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    I gather that the Propofol is more or less used so that you have to have an anesthesiologist involved--plus there is no way you will be flinching!
    The doctor's preference is one thing. The other, in my case, was to have another doctor there monitoring a few unstable conditions that might act up, as the gastro basically has his head up your butt!
    She is totally amazing. Just had a checkup and got to ask more questions. She is really brilliant and very accessible to patients. I am lucky to be her patient.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    I was just curious and read a little bit about Propofol and it seems like it does block the calcium channel (which is bad in my case) BUT it blocks the L-type which may be irrelevant to my case and actually be okay.

    I was also curious b/c when my mom had cancer, after her third surgery in which she was on a ventilator for about 10 days, they had her on Propofol for most of those ten days but adjusted the level so sometimes she was conscious and other times she was not.

    My preference would be to have fentanyl & versed (exactly what you had) without the Propofol.

    That makes sense.

    :vomit::nervous::eek::(:cautious::redface::grumpy::jaw-drop::wide-eyed: (there are endless emoji replies for this one :D)

    :thumbsup::thumbsup::thumbsup:
     
  13. Sushi

    Sushi Moderation Resource Albuquerque

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    I am a week out from pacemaker surgery and have to say that I have more aerobic capacity now that I have a higher heart rate — just something to think about if you have dysautonomia and low aerobic capacity — consider whether your heart rate is adequate to support your activity.

    I believe that I am seeing now that what I thought was a progression of ME/CFS was in fact a problem with the part of the heart that regulates the rate.

    Time will tell but so far I am encouraged. Right now I still have PEM from the surgery so it will be interesting to see how I feel once I am over the PEM.
     
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  14. Mary

    Mary Moderator

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    That's amazing - I'm so glad to hear this!!! :thumbsup::hug:
     
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  15. Mary

    Mary Moderator

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    :thumbsup: I can only imagine how good this must feel for you! :nerd:
     
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  16. Sushi

    Sushi Moderation Resource Albuquerque

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    Just to expand on this a couple of days later--originally I had NMH and then a couple of years ago I seemed to have also developed POTS. But, now I don't think it was POTS at all--rather a heart sinus node dysfunction that causes the heart to go from bradycardia to tachycardia (also known as sick sinus syndrome). This makes me wonder if some of those diagnosed with POTS might have a more primary heart problem that could be treated. Just musing here, but it is amazing to put on my HR monitor and watch my HR respond appropriately to activity. :)
     
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