BeckyC140
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BeckyC140, September 29,  2019  9:38am EST

I need a Pacemaker

What has your experience been with a pacemaker? I am 38 years old and on my way to a pacemaker. 5 years ago I was diagnosed with PVCs after giving birth. I had a Holter monitor and was told they were benign and sent on my way. They have gotten progressively worse. I was put on 25 metoprolol then potassium and magnesium. Last year was told this was working and had 0 PVCs at my cardiologist check up. They acted like I was cured. 

This past summer I did my routine Holter that came back showing PVCs at 33%. This was not at all surprising since I was getting dizzy spells, but never passed out. I went to ER for this twice and and was prescribed flecainide. The flec controlled the PVCs but made me feel horrible. I was also very nervous about the warnings. My heart rate was in the 30s. My electrophysiologist recommended I get an ablation done at Penn in philly. In the meantime I had an echo stress test that revealed possible blockages. I was shocked due to my age and the fact that all precious tests showed nothing wrong w my heart. 

I had a cardiac catheter test that was clear.

Just this last Wednesday I had my ablation. It did not go as planned. When I arrived to the hospital I was in a normal rhythm. I had to get adrenaline drugs to trigger the PVCs. The ablation lasted for what felt like an eternity and then suddenly I went into ventricular tachycardia with a heart rate over 300 BPM. They had to stop the procedure.

I was told my PVCs were coming from both inside and outside of my heart. They also said they found what appears to be scarring on the outside of the right side of my heart. I will need to go back and have a second ablation for the outside of my heart and the following day they will do a pacemaker.

I am just so taken back by all this. To be told this won’t kill you to you need a pacemaker is unreal. I also can’t believe that after all this struggle with a low heart rate all of a sudden I have VT? Was this is an anomaly? 

Anyone else have anything similar to this experience? Looking for a little reassurance. I have a 10,4 & 3 year old and am having a hard time.

6 Replies
  • BeckyC140
    BeckyC140, September 29,  2019  10:07am EST

    Forgot to mention that they sent me home with a LifeVest that will shock me into a normal rhythm should I go back into VT. It’s awful but I guess it’s best to have the added layer of protection until I can get my pacemaker. 

     

    The vest has has been more fear inducing than reassuring for me. Like a constant reminder that I am at risk for sudden cardiac death. I guess it’s better than not having anything to protect me.

  • NewPacer73
    NewPacer73, September 29,  2019  10:39am EST

    Becky, Yes needing a pacemaker is scary and worrisome. I have had one since June 1 because my low heartrate called bradycardia caused me to go into cardiac arrest while in an ambulance en route to the hospital. I waited longer than I should have and did pass out. Now, I was wondering, how will this gadget, put into my chest ever really help me? It wasn't overnight, but I now am fully relaxed about having a pacemaker. In fact, I'm grateful. When you have symptoms, you call what is usually called a "pacemaker clinic". They get you to send data to them right then and there by pushing a button. You give them an estimated time of symptoms. They have stored tons of data. Then they call you back and tell you what was going on. What happens if symptoms happen "after hours"? You go to the ER, they "interrogate" your pacemaker and they can see what happened.Your pacemaker stores a lot of data over time and is fully downloaded on a schedule they will give you. My first big download is in October. Don't have to do a thing. It's called a "virtual office visit." Done completely without you having to go anywhere. The old pacemaker stories no longer apply...this is technology at its greatest.

    Initially, I was hyper sensitive about symptoms. I bet part of that was leftover anxiety from having an arrest earlier. With each eopisode, I understand what happened, increasing my confidence tremendously. I truly believe it's the unknown that scares us as cardiac patients. They set the parameters your pacemaker will react to and they adjust them based on real data. So, now I know the pacemaker will send current if I am too low or too high. The more I knew, the more confident I am. Also, if the pacemaker clinic sees a problem, they call you. 

    You should know there are pacemaker clinics everywhere. You do not have to use the one attached to your installation hospital. So, I am betting the pacemaker will eventually give you the peace of mind you are wishing for as you go through this chaos. They last over a decade before you need replacement and I bet that there will be even longer waits beteeen  pacemaker installs as the technology improves. There is a 2 inch scar over my left boob. Barely see it. And you have to be careful not to raise your arms over your head for a couple of weeks, so the installed wires don't move until you are healed from the inside out. Yesterday, I went in for a routine echo and actually saw the wires from the pacemaker. My whole attitude is one of confidence. Fear of the unknown and all of those terribly scary developments you experience as you head down this road can be extremely worrisome. Let me just say that you will look back on this day and see the tremendous freedom you have post pacemaker installation. I can exercise, do whatever I want with the full knowledge I am being monitored. It's a godsend for me. But, it was awfully frightening to think I needed a gadget installed in me to keep me alive. I now call it my backup generator! And it's totally painless.

    So, should that be the case and you have one installed, you will probably be like me and not understand the total confidence the installer has in the gadget. Then episodes happen. You get instant feedback. And the secret symptoms the heart seems to want to drive us nuts with become totally manageable.

    I couldn't be happier knowing my back up generator is in my chest. It's tested. It tells me stuff I could never figure out when I had symtpoms. You learn to love a new term you will hear called "pacing".  Everyone paces as new and unstable heart rates and rhythms happen everyday. But now you know and the clinic knows what it is and how to let you live the most normal life ever with a 24 x 7 backup generator that handles keeping the power grid working properly.

    Keep posting if you have questions. I know you will go down the same road as the rest of the pacers do and understand this is a really amazing tool they have now. Mine is a Boston Scientific pacemaker. No ER, no cardiologist, no anything tells me they can't "interrogate" it for data, and I'm backed up in a clinic. Doesn't get better than that. You will be back in control of your life and erratic heart rates and rhythms very soon.Hugs to you. It's a miracle they found out what you need before an arrest like me. It's all good now, trust me.

  • BeckyC140
    BeckyC140, September 29,  2019  11:39am EST

    Thanks NewPacer for your reply and sharing your experience. I am definitely looking forward to being on the other side of this after the procedures. The waiting and wearing this lifevest seems to be the hardest part for me. 

    I hope you continue to feel well on your journey. 

  • NewPacer73
    NewPacer73, September 29,  2019  11:56am EST

    Thanks Becky. My brother had to go through the vest episode and hated it too. Can you post once the pacemaker is in and let me know how you're doing! I'm doing great now, by the way. But it has't been so long ago I don't remember all of that worry. Just wait.Great days ahead.

  • Chutzpah
    Chutzpah, November 5,  2019  12:57am EST

    Hi! I just wanted to reach out to offer a bit of reassurance... 

    I was born with congenital third degree/complete heart block. I was pretty lucky to survive the first 7 years of my life without a pacemaker (due to a lot of social related issues). However, I have had a pacemaker since I was 7 years old (almost 20 years). I wasn't allowed to play contact sports like basketball and sometimes had to sit out of gym class (although I didn't mind this very much since I was a drama club kid anyway). I have lived a pretty normal life. I have had 3 generator changes and 1 of my leads had to be changed during my second surgery. Battery life is getting longer and now I have a wireless monitor next to my bed that sends data to my cardiologist. I still have to come in once a year now though for a regular check. My mom still says that the day I got my pacemaker was the first time in 7 years (since my birth) she felt at peace (since she often would check on me in the middle of the night).

    i wish you all the very best!!

  • NewPacer73
    NewPacer73, November 5,  2019  8:59am EST

    Wow, a lot going on at one time. Someday, I hope I can figure out why that happens. For now, let me say this. There is no "too young" age for having cardiac problems. In fact, the earlier they find this stuff, the better the outcome. I'm in muy 70s and it took a surprise cardiac arrest in an ambulance on the way to the hospital to really get the help I needed. So, in a way, being younger may be on the good side of the chart. I am sorry this is happening to you. I wanted you to know I have a pacemaker. I'm in my 5th month with it. I have a congential incurable cardiac problem. But this pacemaker has really done the trick. They put it in your chest. It's like having a doctor on board 24/7. At first, I called the pacemaker clinic (who monitors) when I felt strange or got strange readings. They would have me push a button to send them data, and within minutes I knew what was going on. Knowledge will ease so many of your concerns. After a couple of those calls, I've had to call in once, feeling faint and they saw what was happening and it was no problem. They will adjust your pacemaker settings as you go along to accomodate your needs. The pacemaker appointments are "virtual" and you don't go anywhere. The monitor sends them data periodically. These new pacemakers are good for at least 15 years. What happens with a pacemaker, is once you get used to it, it provides you much comfort to know someone is monitoring you constantly. It allows you to focus on those kids and your real life. Cardiac care has advanced tremendously. I've had problems for over 15 years, but since the pacemaker, my life is more stable, more calm. No Holters anymore!!! You get immediate responses to your concerns. Stay on the patient portal for questions that don't need immediate answers. It took me awhile to develop a trust relationship with this gadget (I call it my 3rd boob) but once that happens, you will see a huge change in quality of life. I never thought this gadget would be so helpful, but now it's one thing you do not need to worry about because it's working 24/7. I'm a Philly girl, although I live out of state now. We are a hardy breed. Having three munchkins is a challenge too. Getting rid of the constant worry about ablations and the pacemaker is about to bring you a well deserved break from cardiac worries. Stuff does happen. When you call and find out it is nothing to worry about, you eventually ignore the pacemaker because you are being paced to correct electrical problems constantly. You will have cardiac care every minute of your life. Eventually, you will forget you have it. There may be times when they will adjust the parameters they want your heart to stay inside of, and they do that remotely. Wait until you get this gift. You are about to enter a very peaceful time in cardiac care. They will modify meds, etc., based on real data. Data is being sent every minute of every day. No more guessing. So, first get on the patient portal. Communicate your questions or concerns...they expect it. Let the machine do it's trick. By the way, if you end up in the ER they will "interrogate" your pacemaker electronically to check out what your heart is doing if your ER visit is even remotely a cardiac issue. It's just plain amazing. Everyday, they are making them even more efficient. They are smaller now. They are a miracle. Just wait. Great times ahead. The worst thing to me is to not know what my damn heart is doing. Now that is resolved. Keep writing on this blog. Ask anything. We will respond. Trust me, you are now entering a more calming time. A few more steps to get you fulltime electronic care. Be patient. Returning to your real life is coming now. Hugs from me to you. 

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