Sunday, August 6, 2017

Be still, my broken heart

It was a lovely day. The end of a lovely week. The first week of our summer vacation.

My heart was racing.

We had just walked into a restaurant near Georgetown. I sat quietly, trying to steady the glass of water in my trembling hand. Water ran down my arm and dripped off my elbow. I looked at Sam, and rolled my eyes. This was nothing new, and in fact it was the reason we were in Georgetown.

"Sorry, I think we might have a problem here."

There was a brief discussion about what we should do. I decided to walk outside to the car and rest there for a minute, see if my heart rate slowed down. Work my way through the list of techniques to interrupt SVT. Bearing down. Raising my legs. Hydrating. Deep, controlled breathing. Nothing was working, and I reclined the seat of our rented minivan and tried to get comfortable. But as I lay back, I felt like I was suffocating. I rolled out of the seat and stood on the sidewalk, slightly dazed. I saw a CVS pharmacy at the corner and began to walk in that direction. Mostly because I was not 100% sure where the restaurant was, and also because - in my disoriented state - I knew that I wanted to be somewhere that possibly had an AED.

I had been diagnosed two years earlier with SVT - Supraventricular Tachycardia - and in the past few months these "incidents" as I had started calling them, had been increasing in frequency, severity and duration. My heart rate would skyrocket to 170 or 180. I would feel dizzy, nauseous, disoriented, and sleepy. Once, I passed out. But I never called 911, never felt it was worth bothering anyone over. Not even that one time when I went to the clinic to check my heartrate in their lobby, and thought the machine was broken because the number was so high. It was the nurse that came to check on me who called the ambulance that day. Part Yankee stubborn, part busy mom, I was lectured more than once about not seeking medical attention. I had promised to really try to do better next time, to call 911. To get help right away.... But I never did.

As I wheezed through the automatic doors and hit the air conditioning, I thought to myself "This is nice.... but I need to sit down." I walked straight into the center aisle and right there at the end, next to the prescription pick up counter with it's white coated medical professionals, was a machine with a blood pressure cuff and a chair. A blessed, blessed chair. I have never been more grateful to have my legs stuck to molded plastic in my life, than I was when my ass hit that seat.

I plunked down, shoved my arm into the cuff, and hit "Go".

144 bpm
130/77

Hm. My blood pressure was usually 90/60. But 144 wasn't that high, right? I was a little confused. Were these numbers bad? I tried to read the instructions.

I took a picture of the screen. Enlarged it on my phone. Still couldn't read it.

I waited a few minutes, my pulse still pounding in my ears, my entire body throbbing. I put my arm back in the cuff and hit "Go".

140bpm
116/80

Now I was really confused. The blood pressure numbers were changing. Was that fast, to have them change like that? What did it mean if the bottom number was going up and the top number was going down? I needed a medical professional. I looked over at the pharmacists. I took another picture. Stood up. Walked around for a minute. I was starting to feel a little less weird, but a half hour had passed by this time since the episode had started. I went and sat back down.

"Go".

138bpm
115/83

I stood up again, and for some unknown reason I decided to leave CVS and walk back up the street and find Sam. I have no idea why I did not sit there and call 911. Or ask a pharmacist in their reassuring lab coat to make the call.  I have ZERO idea why I didn't call Sam and tell him where I was. In all of my disoriented wisdom, I decided that I should leave the public space with medical professionals without alerting them to my condition, and take a walk. Uphill. In 90 degree heat. And not tell my husband where I was going.

I. Am. A moron.

I found Sam a block later, walking towards me looking vaguely concerned. I reassured him that I was feeling better, and was going to call my cardiologist to ask if this was an emergency. I scrolled through my phone, dialed a number, asked for an advice nurse, and was put on hold for 10 minutes. I hung up and called back. I asked to please, please speak to a nurse. I would have to wait, I was told. Everyone was busy. I asked where the closest clinic was. The woman who answered the phone was annoyed with me. "Well, where are you?" she asked. "I don't know" I answered honestly. I hung up the phone and walked inside to the table where Bella had spilled her water and everyone else was done eating. There was a pile of soggy napkins on each bread plate. They were annoyed with me, and it showed. Bella wanted to go to the bathroom, so I took her. Then I ate the lunch I had ordered 45 minutes earlier, that was now sitting cold on my plate. I still felt awful. I went back to CVS.

"Go".

117bpm
106/81

Whatever. I'm fine.

So we went to the zoo. As one does in the middle of a cardiac emergency, when it happens during the first week of your vacation.

Long story short, I am obviously here to tell the tale, so all's well that ends well and whatever other cute phrases might be applicable feel free to insert them here, Pollyanna. Then GFYS, because let me tell you: experiencing SVT is terrifying, along with being really unpleasant and exhausting. It does not end well. It ends with you feeling like you have run a marathon and then been punched in the throat, then kicked in the ribs. Also, someone should have called 911, and maybe that someone should not have been me. AHEM. And probably, someone should have maybe decided that the zoo was not the best place to hang out that afternoon. But who am I to judge. I'm a grown ass woman, and I do what I like.

Which is why I am quite proud of the fact that the following Monday in the pre-dawn haze, I called a Lyft, and headed to Arlington alone, while the family slept soundly in our hotel room. I didn't wimp out. Not even when the driver got a little lost and it would have been so easy to tell him to just take me back to the hotel.

At 8am, I had a catheter ablation performed at the Virginia Hospital Center.

And you know what? Having metal wires threaded up my veins from my groin to my heart - while not the ideal way to spend a sunny Monday morning - was not as bad as SVT. And while using a bedpan in the middle of the catheter lab in front of the entire staff was one of my most humbling life experiences (of which there have been MANY, just dig into the archives for proof) I was wheeled out of there several hours later a healed woman.

I felt good. Damn good. So good I began complaining almost immediately about the mandatory four hours I had to spend lying flat on my back. I also complained about having to use a bedpan again. I also complained about having to eat lying flat on my back. I begged to sit up. To bend my knees. To use a toilet. But the nursing staff, while very kind, were also extremely firm. No. Not a chance. Cool your jets, lady.

Someone gave me my phone.

"Can you head over soon?" I typed out slowly.
"Van is out front," Sam replied quickly. "I just need the key."

By the time he arrived, I was really pissed off. My back was killing me. I had to pee again. I was hungry. There was nothing good on TV. At the three hour and fifty minute mark, they let me stand up.
At four hours post-catheterization, I left the hospital, climbed into the passenger seat of our rented minivan, cut off my hospital bracelets with nail clippers, stopped for a burger and a (decaf) Frappuccino, and was dropped off in front of the Howard Theater in Washington DC at 6:30pm.
At 8pm, I was onstage performing for the Moth StorySLAM. The theme was "Beauty". I talked about my children. All of them. And I cried, alone, in front of 400 people.

I have never felt more alive.

But that, my friend, is a story for another time.

Thursday, August 4, 2016

Bringing it all back home

Remember a few years ago, when we went to the hospital the day after the Superbowl, and brought home a beautiful baby girl?

Me too.

And for almost her entire first year, she lived here. With us. Our (foster) daughter. We knew it was temporary. And after a few months we were rooting on her biological family, all the while loving her more and more each day.

We brought her to meet our family.

We fought to get her assessed and qualified for services she needed - and got the early intervention she deserved.

She slept on our chests, next to our beds, in our arms.

And then she was gone. Gone to live with her biological family full time, for the first time in her life.

We saw her occasionally, but to be honest? My heart was broken.
We took a few more foster cases, even as I could feel myself withdrawing, wishing with each new case that, instead of loving a new baby we could just have Bella a little more often.... but as the months passed, her visits were fewer and fewer. Shorter and shorter. And then.... they ended. We were not allowed to see her anymore. "It would be confusing", we were told. The issue, of course, is that we loved her so much - and she loved us in return - and the bond that had been created was reinforced with every visit. And perhaps that was keeping her from truly bonding with her biological family. We certainly didn't want that. So we kept her photo on the shelf, and her crib in her room, and her blanket carefully folded in the closet. I dreamed of the day that she called, or showed up on my doorstep clutching a few wrinkled baby photos I had given her family in a memory box with her name painted on the lid. I prepared myself for a long wait. But I had this feeling - I could barely acknowledge it to myself, never mind say it out loud. I just knew she would be in my arms again some day.

And then, quite abruptly, about a year after our last visit, I was allowed to see her again.

And it was just as it had always been. Well, almost. She was a little unsure. A little hesitant. Maybe a little confused. But she seemed to sense that something was familiar.

And our visits became more frequent.
And then she was allowed to spend the night again.
And now she is here for a few days at a time. She follows "Sissy" and "Mah" around the house. She calls me mama. She has her room, and her bed, and her blanket and her toothbrush and she rules the roost. She is the baby of the family, and she revels in it.

The details are confusing, contradictory, and ever changing. But for now, she is here. And will - if everyone can agree to work together - continue to be here. Because as a friend told me, when her visits were abruptly ended altogether: "How could having more people to love you, be confusing?"

She is part of our family - and we are part of hers. And we love her. All of us. What a gift.