A reprieve of sorts

Over a year after his initial diagnosis, Shaun finally got some substantially good news about his heart this week. His second echocardiogram from six months ago showed an ejection fraction of 30%, up significantly from his original 15-20%. Still, though, according to the experts, anything below 35% is in the red zone, meaning essentially holy-shit-how-are-you-still-walking-upright? and would require the implantation of a defibrillator.

We were pretty much braced for that step. I mean, he would then be part robot (sweet), and I wouldn't have to break the glass on any AED machines, because he'd have that power within his own chest. But it made me a little queasy, somehow, because it's not as if we could forget, ever, about his extremely poorly named illness once he had a medical device implanted just under his skin.

So yesterday, hanging out in the Heart Place Waiting Room (which is not what it's called but whatever) with the white haired ladies and guys on oxygen tanks, I tried to take deep breaths.  It's okay. It's better than having him drop dead in front of me. It'll be a cool party trick when I yell "Clear!" periodically.

The doctor raised his eyebrow as he checked Shaun's latest test results (a MUGA test, this time, which is more precise and also, apparently, more radioactive). I hate raised eyebrows. Shaun and I held hands, and we were both sure the news was going to be bad. Instead, he said "You're at 39%..." What? You mean 29%, right? Or 19%? Nope. "...which means you're not eligible for a defibrillator." What? Really? I mean, maybe we'll regret this sometime, when the robots rise up and an implant would've spared him, but for now? 39 is my most favorite number of all time.

He'll keep working, watching his sodium, exercising, and taking his medications. 39% is just above the red zone, after all. But I feel like we dodged a bullet, at least for now, and I'm so, so glad.

Sorry I blew up.

Shaun is making fantastic progress at Crazy Work, as he calls it. In his off time, he's watched One Flew Over the Cuckoo's Nest and Girl Interrupted, and I'm thinking What About Bob is next in our queue. The outpatient psych program is just exactly what he needed, and we are all so thankful and relieved. It's so good to have him back.

And then, on Sunday night, he got a terrible headache. Sudden and fierce and throbbing, it was an 8 on a scale of 10, he said. And with it came a strange shoulder pain. But because we're not smart people, he didn't go in until this morning, before the start of Crazy Work. At 8 am, he had bloodwork and an EKG. (This is our life now, apparently). Everything's fine, according to those two tests, and the walk-in doctor gave him some Tylenol with a barbituate of some sort, to help with his headaches. (Cardiomyopathy patients can't take ibuprofen or aspirin, and should avoid caffeine. It's Tylenol or nothing, but I guess adding barbituates is okay).

But between the EKG and the results, a telemarketer called me. Oh, mercy, that poor man.
"Hello?" I answered, hoping it was good news from Shaun.
"Yes, hello. My name is Dave. How are you today?"
"I'm fine..." The tension in my voice was not being hidden from Dave, I'm afraid.
"I am calling to congratulate you! You have been selected to win a $50 gift card from Wal-Mart."
"Thanks, Dave, but I'm not interested. I'm sorry. Have a good day." I hate telemarketrs, but I see no use in being rude to someone who's doing their job.
"No no no," Dave interupts me. "Just wait..." Oh, Dave. You should've given up easier.
"No, YOU wait, Dave," I snapped. I never snap. I'm nice to assholes, as a rule. My voice turned to a crescendo: "My husband is in the hospital and I AM NOT TALKING TO YOU ON THE PHONE RIGHT NOW. WHO DO YOU THINK YOU ARE?"

Dave quickly hung up, without apologizing. And V burst into tears because Mommy was yelling at a strange man.

I only feel a little bad, and that's only because it upset V. It had to be done. Besides, Dave, I hate Wal-Mart.

Ejection Fraction, What's Your Function?

Echo cardiogram #2 showed that Shaun's gigantic heart has improved since six months ago. He went from 15% ejection fraction (which I thought was 20%, as per earlier posts, but which everyone around me insisted I misheard) to 30%, an impressive gain, in my opinion. I had been reading all these terrible online testimonials (I know, I told you not to do that, gentle readers, but here I am not heeding my own advice) about people who were natural athletes, who only ate bark and berries and ran 5 miles a day, and in 4 years their ejection fraction had just steadily declined. So I was extremely relieved with these results.

(For those of you unfamiliar with Shaun, um, he's a natural sports fan. Who likes to sit and watch games. While eating hot dogs and nachos. At the same time.) Shaun's lost 50 pounds, and is doing fairly well at keeping his sodium to a minimum, though these last few months of chaos and frustration and non-stop illness have been wearing on all of us (Shaun's massive anxiety episode in December may have been glossed over here, but it was far from glossy back at home). He found the results okay, but they did make him determined to exercise more, and watch his diet more carefully.

Frankly, when you tell your nursing friends that Shaun's ejection fraction is 30%, they'll probably still look around discreetly for the nearest AED. Lord knows, I do that every time we go out in public. And he may end up with an internal defibrillator (though I have some misgivings about that, mostly because he hasn't had any recorded arrhythmias, that I know of, though I am attracted to the idea of implanting superpowers in one's body). But given the shit storm that was 2010 for us? I will take a 30% ejection fraction and run gleefully around the room. Provided there's an AED & some salt-free nuts.

Nice ejection fraction, babe.

Things that suck about heart failure:
1. learning more new terms/concepts than I have since college. Or at least since we became parents.
2. It's freakng called heart FAILURE. How does that even sound fun?
3. Trying for a low-sodium diet. This is a respectable goal, but do you have any idea how hard it is? Shaun's supposed to have 2000 mg or less of sodium a day, on average. Which isn't too bad, considering some people can't have any salt at all, and the US RDA of sodium is 2400 mgs/ day. But one slice of cheese pizza has 702 mg of sodium. A can of Campbell's chunky soup has roughly 1600 mg of sodium. One egg has 65 mg. One cup of milk has 135. How did this happen? Why is it everywhere? Why is it in milk but not in whipping cream?
4. Seeing the horrified faces of my nursing students when I tell them Shaun's ejection fraction is 20%.
5. Four doctors appointments a week.
6. It's damn hard to plan a date when you can't go out to dinner together because everything at every restaurant is made, primarily , of salt.

Fun things about heart failure:
1. He might get an implanted difibulator. You know, a difibulator is the kind of thing that Dr. Green would use on ER right after he shouted "Clear!" And everyone had to stop touching the patient. Shaunie could have one of those implanted. Like a magic power, kind of.
2. Shaun has a wee bottle of nitroglyerin he's supposed to take with him wherever he goes.
3. This makes me think of us as Hepburn and Fonda in On Golden Pond.
4. That means I get to be Hepburn.
5. Our insurance covers 3 of the 4 weekly doctors appointments (and I feel very, very fortunate for this).
6. Heart in spanish is El Corazon. El Corazon is an album I enjoy by Steve Earle.

Okay, it's a stretch to come up with 6 fun things about heart failure. But I'm trying.

A blessed fourth of July to you and yours. Be careful of waterballoons.  Love all y'all.

Settling down

Shaun's been out of the hospital since Wednesday, and he is feeling pretty good overall (thankfully). We've been working hard to figure out what he can/should eat, and realizing that if you just take salt out of things and don't replace it with something yummy, most things taste like wet cardboard. At least, that's what I've been realizing.

We have heard from so many dear friends, through blog comments, facebook, e-mails, and phone calls. Honestly, when I feel overwhelmed (you mean he's hungry again? And he already ate all the leftover chicken?) or lonesome, I think of all of you, and I feel much better.

Our merry-go-round is still spinning, and still a bit wobbly, but at least it's slowed down enough for us to take a breath. Thanks for all the thoughts, prayers, and love. They help more than you know.

Serious need for re-branding, people.

So it looks like Shauners should get to come home tomorrow, late morning or early afternoon. We'll meet with doctors and set up appointments to start his cardiac rehab regimen. In the meantime, the nurses dropped off a packet of information for us to peruse to better understand what we're dealing with.

You know what it's titled?

Heart Failure Packet.

Fun, right? What the hell? All kinds of other diseases get fancy names (see: chilbain, dropsy, scarlet fever, whooping cough), but this is the best they can come up with? Let's call it Jeanette, or Tha-Thump, Tha-Thump, or even Heart Sickness Packet. Heart Failure Packet just sounds so...so...much like a lost cause.

But wait, it gets better. The inside of the Heart Failure Packet includes fascinating pamphlets like "Living Well with Heart Failure," and "A Stronger Pump" with a cartoon of a heart flexing a....bicep. What? Oh, and the paperwork to create a living will.

I understand. Things are very serious. But, um, Meritcare, maybe include...I dunno, a few pretty stickers? Some semblance of hope? Perhaps a free t-shirt that says "I'm Successful at Heart Failure!"

We have to cut out salt. Do you know what has the most salt? Foods that taste good. Everything made by every fast-food company everywhere. My mother's homemade bean and ham soup. Frickin' milkshakes!

I'm looking forward to Shaun coming home, and I'm giving all our salt-laden food away. And if Meritcare needs advice on sprucing up their Jeanette Packet, I'm all over it.

Thanks for the love, guys. It means the world to us.

Saltily yours,
J, $, and V

It's hangin'

Thanks for all the care, concern, comments, and calls, dear ones. Shaun got good rest today, and will have an angiogram tomorrow (which totally sounds like a singing telegram from a girl named Angie, by the way). If that's clear, he will get to go home tomorrow, with some new meds and follow up appointments. If it's not clear, he may be in another day or so, but even then there are treatments and plans already laid out.

Everyone at the hospital has been lovely, thorough, and optimistic. My last post was scary, I know, but I'm feeling much more hopeful, and much less afraid. We're lucky to have caught Shaun's condition at this point, and the medications are already making him feel better. We feel well cared for and well informed, and for that I'm thankful.

Our lives will need to change, regardless. It's clear we need to take better care of ourselves and each other. And I know this is terribly corny, but instead of the end of our old lives, which I bemoaned in my last post, I hope we'll look back on this week as a new chance, a new beginning.

Please know that if I don't return your calls or messages or e-mails, it's not that I haven't received them. I'll try to keep updating as we get new information, and I love knowing we're in your thoughts. When things calm down a tad (hopefully tomorrow or the next day), I'll work on getting back to each of you. Until then, thank you all so much.

Father's Day

Shaun is sick. He had pneumonia about ten days ago, and still wasn't feeling better yesterday. The doctor at yesterday's walk-in said "Well your heart is enlarged..." as if he should have known that. We didn't. Shaun was admitted to the hospital last night around 6:30.

Cardiomyopathy. Do not look at any links I don't put here, people. The internet is a terrifying place.

When I was 12, and my dad had the stroke, I remember the distinct feeling that nothing would ever be the same. I got pissed off at Connie Chung for prattling on about celebrity news. I feel that way now (except for the Connie Chung part). It's not an especially fair analogy, but still I am trying not to hyperventilate.

It's been a hard year for us. A terrible year. We decided to have a second baby this winter, which drove us straight to marriage counselling this spring, trying to remember why we loved each other, and whether or not we could figure things out. Just this month, we both started to feel again that maybe we could work through this, that we could actually still make a life together.

Now he's in the hospital, and it's father's day, and I'm trying not to freak out. I want to call someone, someone who will tell me this will be okay. I want to call the Mayo Clinic. I want to shake the doctor who read Shaun's x-ray last week, who didn't tell us/notice/mention that his heart was already enlarged. I want someone to fix this. I want my husband, and I want V to have her father, for a long, long time.

"I don't want anything for Father's Day," he said last week. "It just reminds me how I'm not a father of two like you wanted me to be." My sweet holy moses, man. You are above and beyond the father I wanted you to be, and you have been since September 7, 2005. I don't need a second baby. I need you, and me, and her, as healthy as we can be, together for as long as we can make it.

I want our old life back. I don't think it will ever be the same.

(Edited to add: Shaun's feeling pretty good right now, just a little short of breath. We haven't met with the cardiology team yet, and don't know much at all about what our future will hold. I don't want to scare anyone unnecessarily: I'm busy doing that to myself.)