Heart Failure and Success

February 14, 2016

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January 5th I had a pretty simple surgery to have a Sub-Q ICD implanted. I’m a heart failure patient, and that means I’m at a higher risk for life-threatening arrhythmia, having my heart stop, dropping dead, etc, blah blah blah. (Back story here.) An ICD is a wire-and-battery-pack device that detects heart problems and does the “CLEAR!” shocky thing for you, automatically. This was like a heart safety net. I was able to get the latest variety of ICD, which is about the size of a deck of cards and installed on your side. Sideboob, basically. They sent me home the next day with bandages and Percocet. The recovery week I took off wasn’t my favorite vacation of the year (Ow!), but if you will believe that myth about redheads feeling pain more acutely than others, I’ll use that as my excuse. A couple weeks later I was still sore and still not really healed up, but back to life and doing all right.

And then, I wasn’t. About a month post-op I got a fever, and had lots of other incision-related fun I won’t go into for fear that I’ll disgust bore you. I ended up in an urgent care center, then my surgeon’s office a few days later for more stitches. Then, they told me to go back to Penn Presby hospital by way of the emergency room. *Do not read next sentence if squeamish* I could suddenly SEE the device, through the scar that wasn’t healing, in my side. Note: Suburban New Jersey emergency rooms have spoiled me. Anybody who whines about the conditions or wait time there should cross the bridge and try a city ER. Whoa.

I spent about eight hours in the ER – you have to remind yourself that you don’t want to be the one the doctors want to see quickly. I was just chilling out, watching TV, and not being allowed to eat or drink, because more surgery seemed imminent. X-rays and doctor talks occurred, and we (they) decided that the ICD unit, but not the attached wire that had also been implanted over my heart to deliver shocks, had to come out. It was out of position, pushing outward on the incision, and everything was *shudder* infected. Ew. It was being a little B, basically.  It could possibly be re-implanted on the other side of my body, or taken out entirely and a new one implanted later, after healing. Later? Wait, wasn’t this business was supposed to have been simple and over a month ago? Now, I am usually my nurse’s favorite patient and my doctor’s easy case. But I was HANGRY tired, and weary of this shit ordeal, so… I got a little pushy with the very sweet ER doctor:

“Before any more surgery, I want another test of my heart function. I know I didn’t improve from April to September, and I know it’s unlikely I’ve improved since then. But I feel like I’m doing better.” i. e., “Please let’s not do another implant surgery and risk all this happening again if the damn thing doesn’t need to be in there, buddy.” He said sure, they hadn’t planned to do this, but it was a non-invasive test. Checking my ejection fraction (heart pumping function) again “might be prudent”.

Well, guess what?

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Fast forward through a night of ‘sleep’, to what was supposed to be surgery day. I’d been fasting all day and was going to start munching on drywall like Cookie Monster soon. I got the heart function test that morning.  After 6pm my eletrophysiologist finally got out of his long day of surgeries. He had good news, and bad news, he said. He wasn’t able to fit me in for surgery today after all. (Bad news.) However, I could now order dinner. (Good news.) But, *drumroll*… My new ejection fraction? A much better 45%! (And now I’m not even mad!!) I’m not out of the woods, but mostly out of the danger zone, as he put it. What would be done in surgery was ultimately my choice, but no ICD was clinically needed anymore. *HAPPY DANCE*

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Feb. 2015: 15-20% April 2015: 35% Sept. 2015: 35% Feb. 2016: 45% WOOOOOOOOOHOOOOO!

So, early morning surgery commenced the next day, and I was back in time to order lunch. Not a food person at ALL, am I? Instead of one nice-sized cut I got two, because they took the entire system out, wire and all. It’s not that I don’t care that I again have incisions that are slow to heal and currently make it hard for me to do fun stuff like stand up quickly or drive. Or wear a real bra.  I DO care – it smarts.  But it’s temporary! And after a year of having to think of myself as in the danger zone, being out feels SO good. It’s not over, I may (it’s likely) be on these meds most of my life, but I have succeeded in getting better. I’ve done several things to make that happen – details are a post for another time – and they’re working. The relief! I’ll take the stupid scars, thankyouverymuch.

This whole 4-week story could easily be viewed as a list of complaint questions: Why didn’t the ICD stay in place? Because interior stitches didn’t hold, because…I’m weird? Why didn’t the incision heal properly? See previous answer. Why didn’t one of my Penn doctors double check that I needed the device closer to the time it was implanted, to avoid this whole thing? Statistically, if somebody’s EF is going to improve, it usually does so in the first 3 months of medication, and we were way past that. Why did it take my own suggestion to repeat the test in the hospital before a second surgery? See previous answer, and also, because…yeah, anyway, WTH, guys? Give a girl a chance! 

Honestly, the answer in general is: Because I am not normal.  But we knew that already.

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Me and the boy, working from “home”, waiting around for “go time”.

But here’s something I find very cool/significant/spooky:

At my doctor’s suggestion I bought myself a nice medic alert bracelet from Lauren’s Hope after the first ICD surgery. It had 4 short lines of text to include name, conditions, allergies, emergency contact info, and direct someone to my wallet info card. I tweaked the inscription to fit everything just right, or so I thought. But when the bracelet came I was annoyed to find that I hadn’t actually written on there that I, in fact, had an implanted defibrillator. Duh, that was half the point. I was going to re-order the ID tag soon to include that, but hadn’t gotten around to it yet.

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At least some nice wrist bling should come out of all this.

If had I ordered the bracelet correctly a month ago, today it would have been wrong. Now, it’s totally accurate. Is that a little weird, or what?

By the way, I am now one of Penn’s “bad” statistics; an infection, repeated hospitalization, and failed implant after one of their procedures. Sorry guys. I really do think very highly of you. Also, excellent chicken fingers in the cafe. In the operating room, right before they gave me the happy juice, one of the surgeons teased that I was ruining their numbers.

I joked back, “What are you gonna do, cut me?”

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A Year Ago: Heart Vs. Brain

February 2, 2016

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A year ago:

I was out of breath from walking down the hall. I thought I was just pathetically out of shape.

I had a lot of trouble getting a good night’s rest. I thought that was “life”.

My stomach felt bloated and my jeans were fitting uncomfortably. I thought I was gaining weight.

I had no appetite. This of all things should have tipped me off but I thought, “Good, cause my jeans are fitting uncomfortably.”

I was “grumpy”, didn’t feel like myself at all, and didn’t take as much joy from my nice little life. I thought I was overwhelmed from work and doing the busy mom thing.  

I was exhausted, I couldn’t lay flat without feeling like I couldn’t breathe, I coughed all the time, and I felt like I couldn’t take in a good breath. I thought I’d caught a bronchitis or something, and it would run its course.

I remember having the distinct feeling that I was kind of sucking at life, but I bet I was giving folks a decent impression of being fine.

A year ago, today:

I decided to declare defeat (that’s how I looked at it) and went to a clinic after school. I was tachycardic, had an ejection fraction of 15-20% (it should be 55+), an enlarged heart, and I had some major congestive heart failure. I spent four days in the hospital and found out that I had a heart condition called dilated cardiomyopathy that, left untreated, had a “very poor” five-year prognosis (Read: If we don’t fix this, you’re not likely to make it five more years.)

Yes, holy sh*t, indeed. I wrote that clinic nurse a heck of a nice Thank You later on.

I can’t believe it’s been a year already. This seems crazy, but I actually think, “Wow, what a good year.” With a really good prognosis today, this is not a big thing. Despite not losing weight because HELLO, stupid metabolism-slowing medications – I’m living a significantly healthier lifestyle. It does still involve eating junk and Netflix. It also involves counting sodium, going to the gym, and getting a defibrillator implanted last month. I’ll get into changes I’ve/we’ve made in a future post, but I gotta tell ya, this “heart failure patient/survivor” thing, it doesn’t have to be awful. I do still tease Hubby that at least he can get a young hot blonde 2nd wife when I kick it. He does not find that funny.

I love this comic and I'm linking to him below and hopefully I won't get in too much trouble for using his image and spreading this awesomeness around the interwebs. Go buy comic stuff from theawkwardyeti.com, ok? Cool.
I love this comic and I’m linking to him below and hopefully I won’t get in too much trouble for using his image and spreading this awesomeness around the interwebs. Go buy comic stuff from theawkwardyeti.com, ok? Because how perfect is this? How lucky am I to get to think that my brain is enjoying a cup of coffee and my heart is skipping around, happy to be doing so much better?

Readers, please go to the doctor when you don’t feel right. Make the time. Don’t be afraid of them thinking you’re a hypochondriac or a whiner. People love you, you are important, and you just never know.  Feel free to tell them about your friend Meg who just thought she had a touch of bronchitis.

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