Pacemaker & ICDs: Introduce Yourself & Meet Others

@walkinggirl

I love the nickname you gave your ICD a name. Sounds like a good one for what it does for you. I think if you don't mind I will copy your name and start calling mine: "my buddy" also.

Hello,
I had an ICD implanted two weeks ago because of a ventricular tachycardia event that knocked me down in the woods a mile from my car. I called 911, they came to rescue and were very concerned with the results of the first EKG they ran - heart rate over 270 bpm. I remained conscious and converted without being shocked by an external AED. I was airlifted to the hospital and I left several days later with the device in me. Part of me feels rushed into the decision to do the implant. Now I have it and am trying to feel grateful knowing I have some protection against ventricular tachycardia progressing to V fibrillation. But I'm not sure of all that I've bought into going this route and would love to hear about the experience others are having with an ICD. I also have been diagnosed with atrial fibrillation since 2015 and am awaiting to be scheduled for an ablation, which my doctors say I should still have as VT and AF are not related, or at least not treated in the same way.

@nickell I am so glad to read that you were able to call 911 and receive the help you needed a mile away from your car! You sound like you have mixed feelings about your ICD which you've had now for two weeks. It's definitely an adjustment - this is something new - and you are not alone in having the up and down, pros and cons thoughts related to it. Did I make the right decision? I received Buddy, my ICD, 4 months after a septal myectomy, it took that long to figure out that the dizziness and giddiness that developed several weeks after surgery along with a couple of syncope were due to arrythmias. The ICD paces to keep my resting heart rate at 60, I have not had any shocks during the 3+ years Buddy and I have been an item. Is your care at a COE (Center of Excellence)? My electrophysiologist monitors the ICD activity. I have the device that sends data on a shelf near where I sleep. Every 6 months I get the device checked in person by a nurse who works for Metronic, the brand of ICD I have. The graphs show sodium level, hours of activity, two of the graphs I understand. Here on Connect, we always encourage participants to learn all they can about their situations. Here is one of the articles from Mayo Clinic about ICDs. https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/about/pac-20384692. How will an ablation enhance your heart's function?

Glad I found this group. I'm one week out of having a pacemaker put in. One week checkup yesterday and all looks well. Guess I have to wait until six week checkup to see if it doing what it is suppose to do.
Take Care all
Sue

@mbauxd
Was your pacemaker programmed to pace your heart continuously? If so you should be feeling that change now. If not check your pulse and see if you are being pulsed at the level it was programmed.

If you had yours programmed to just pace when you got to low that will take some time to realize and be recorded from your device.

@mbauxd We are glad you found this group, too! It's an adjustment, something new to think about! Buddy (my ICD) and I have been an item for over 3 years after a septal myectomy. After a couple of weeks, I developed dizziness and giddiness which was caused by arrythmias. I am glad to read that all looks well at this time. What was happening that your doctor wanted you to have the pacemaker? How has the pacemaker alleviated any symptoms you were experiencing? After my ICD was installed, the readings were showing too much water retention. The doctor prescribed a diuretic which did not help. It took a very short while to readjust the device, so it was reading my water retention data correctly. You may wish to read https://www.mayoclinic.org/tests-procedures/pacemaker/about/pac-20384689, it may generate questions to ask your doctor.

Hi Linda. Thanks for the reply. I learned a lot from the link you put in there. Yes, because of a LBB blockage my heart would not get the signal to beat at the same as the right side. The beat was off and very slow on that left side. Not pumping much blood out from that side either. I had two cardiac MRI's in Boston at Brighams and Womans hospital. Yes I was getting dizzy a lot. I'm feeling a little less tired as I used to get and no dizziness 9 days out.
Take Care Sue

@suegaleregis Oh, good! You are associated with one of the very best facilities for heart care! (My home cardiologist was trained there.) I am so glad you have felt the good effects of having the pacemaker - it changes the quality of life, living with dizziness is limiting and frightening. I am continuously amazed at the dozens of heart ailments there are and how cardiologists and electrophysiologists are able to diagnosis and treat them. Take care!

@walkinggirl
I have had a ICD/Pacemaker for over 20 years now. Everything that can happed to someone with a ICD/Pacemaker has happened to me.

I am intrigued by you mentioning readings showing water retention. Is that something in your device, another device. I have not heard of such a device to monitor water. The way my doctors look at amount of water is from blood test.

IF there is another device out there that can monitor this I would really like the information. I don't know if I drink enough water or too much as guidance comes different from my heart failure doctor (limit water intake) and my other doctors PCP and EP of drinking a lot of water.

@jc76 I have a Metronic ICD. The data is downloaded to the cardiologist office from the collector box on the bedroom shelf and it can be studied . The test result is posted to My Chart. The electrophysiologist looks at all the numbers and graphs. He'll summarize the findings in a sentence, but I do understand a couple of the graphs. I drink 2 quarts/liters each day, the HCM affected my kidneys which I need to keep flushed.