This summer has been an interesting one, to say the least. Instead of my kids writing about what they did on their summer vacation, they’ll be writing about how they took over all of mom’s duties because she had to have a pacemaker/ICD installed. A defibrillator, AKA “the de-freak-o-later,” as my youngest dubbed it. I prefer “de-freak-o-later” because it does indeed make me less freaky.
To think of oneself as a healthy person who works out regularly and then go in for an annual check-up and be told you need an ICD is quite shocking (ha, that’s kind of a pun). I’d just gotten a new cardiologist, courtesy of our awful/fantastic PPO plan (awful because the out of pockets were so high, fantastic because I could go anywhere). This guy was recommended to me by another cardiologist, who sends all his family to him. When a doctor uses another doctor, you kind of know he’s the best. This guy only deals with heart failure patients but agreed to see me, because he specializes in the rare genetic heart condition that runs in my family: noncompaction cardiomyopathy.
Basically, this condition is what caused my mom’s heart to fail, ultimately, along with two of her sister’s. It happens when the walls of the heart are spongy instead of smooth– some error in fetal development, possibly. Sometimes the walls are just spongy and nothing happens. Sometimes they become weak and as a result, the heart beats irregularly, and as a result, the heart enlarges.
About half of these patients, I gather, die suddenly due to the irregular heartbeat. This is sometimes what you see happen with otherwise healthy young athletes and such.
It’s a pretty newly named disease. When my mother died 21 years ago, they did not know this was the cause– they thought maybe she’d had scarlet fever as a child. A lot of docs don’t know much about it; my family practice doc and the anesthesiologists at the hospital asked me to explain it to them. The cardiologist I’m seeing does cutting-edge research on the condition.
Anyway, he had me wear a Holter monitor for two weeks instead of two days, like is usual, and found that my heart was doing a funky-dunky dance at one point (ventricular tachycardia) which corrected itself shortly after it began. However, if it ever did that and it DIDN’T stop, then my heart would just stop working. If I were his sister or his mother, he said, he would advise me to get a pacemaker/ICD. It was insurance against the unlikely possibility of this occurrence, he said.
Though I was not fond of the idea of getting an appliance that requires surgical replacement every 7 years or so, I had to agree with the whole not-passing-away suddenly thing.
After all, unlike my mother, I want to live to see my kids get married and maybe even have grandchildren. I want to be old and crotchety with my husband, so we can do the Retired Senior Volunteer Patrol together (a police volunteer force of seniors who go around and look for stuff out of place). I haven’t been to half the places I want to go.
Unfortunately, my first crack at surgery was a failure. First of all, the device slide up and down inside my chest. It hurt a lot. I chalked it up to it not being scarred in place yet. But then my diaphragm kept contracting as if I had the hiccups. Turns out the sponginess of the heart walls makes it difficult for the ICD wire to stick.
So it came to be that just one week later, I had to go back in and have a new wire put in. This wasn’t exactly a picnic, as the nurse promised it’d take 15-30 minutes. I told him, “I’d allow more time for that if I were you.” And indeed, it took two hours.
For this one, I was in a twilight sleep, but I woke up fully while the fellow (doc in training) was stitching me up. I told him I could feel it and he said they were almost done and asked if it was sharp or dull pain. I said, “Sharp.” I asked how much longer and he said, “5-7 minutes.” At this point I considered ripping off my mask, but was afraid the stitching would come out, but then they gave me more meds.
Apparently it’d taken so much longer that they were afraid I’d stop breathing if they gave me too much more medication.
The other thing they fixed was the device slipping around, by stitching it to my muscle. It feels way better.
I’m now almost 3 weeks past my second surgery and feeling great. I didn’t feel bad before. But I find that the more stuff I do, the better I feel.
My cardiologist assures me that plenty of people have this condition and never really get sick from it. My heart function is really good. There’s simply no way to know.
The cool thing about this device is it has a wireless modem that sends info to the doctor when something’s wrong, and on a regular basis. If I feel something’s wrong, I can also hit a button to have it transmit data.
It mostly doesn’t do anything. I take a beta blocker to help control PVCs, or extra heartbeats (if I’m active,they go away!). If my heartrate drops below 50, it’ll speed it up (never happens) or if it goes above like 190. Or if it goes into such a strange rhythm that it won’t stop, it’ll shock it.
So I definitely feel safer now than I did before.
At this point, I am pretty much back to normal. I am cleared for almost everything– driving, travel, work, roller coasters, sports. Unfortunately, my lifelong ambition of challenging Ronda Rousey for her championship MMA title can never be, because I can’t do combat sports. Le sigh. Or ultra-competitive sports, like ultra marathons, which I was ALSO TOTALLY GOING TO DO. Now I can sit and talk about how I could’ve been SUCH a contender, if not for this pacemaker thing.
This is at the hospital, first surgery.
This is shortly after the surgery. Pretty lumpy and swollen here.
This is after surgery 2, when there was less swelling, probably because the device was stitched into its rightful position.
The reason I’m sharing all this is because I think it helps if you’re looking for info on the procedure and you find someone who can tell you what happened to them. In the time since I shared some of these pics on Instagram, I’ve had people reach out to me and tell me how they were affected by their own ICDs.
I would also hope people know the device can help them do MORE activities, and to lessen their worry.