Oct 12, 2016

Choosing Whatever

As I wrote in my last blog post, I was diagnosed with obstructive hypertrophic cardiomyopathy *(HCM) in August.  The HCM Association, of which I am now a member, encourages those diagnosed to "share their story" in order to increase public awareness of this condition. It's not uncommon (1/500 have it, but many don't even know that they do). And if you have it, your kids have a 50/50 chance of having HCM. So, it's worth knowing about, particularly if you have an unexplained heart murmur or a history of family members dying unexpectedly.

So .... here's my story.


August 2016:  All I wanted was more Ativan so that I could fly to Europe in the fall.  I need to find a new doc since I no longer commute to DC.  So I decide to get a physical. It's the mature thing to do.

The doc listens to my heart and hears a murmur.  It's been there for years and no one cared. I had an echocardiogram at one point but was told it was normal. The new doc orders an echo because the murmur bothers him.

The night I had the echo some cardiologist I had never met leaves a message on my cell. "I read your echo. Your heart is complicated. Blah blah.  I've sent a prescription to the pharmacy for you. Take it immediately. Let's talk in the morning."

I play the message for Mike.  It didn't sound good, but I laughed if off. I do not pick up the prescription. I mean, who was this guy?  I don't sleep much that night.

The next morning Dr. T explains that I have HCM and I explain that I will be leaving for Europe on October 1 and can this all wait?  No it cannot. Within the next 3 weeks I get more and more messages that I'm scheduled for this test and that test.  I dig out my file on family medical stuff. Wow, my father had this. I talk to my cousin and she knows more than I do about my own family. I learn a lot. My father, brother, and aunt died from HCM. There's some suspicion that another brother may have died from it (he died of SIDS at 6 weeks). Some of my cousins also have it.

I'm beyond upset that I've inherited this from my father, as that is a very complicated issue. Does childhood crap ever end? And what about my kid?

September 2016:  All the test results are in. I have access to them online and read them and google every sentence. At this point, I'm a few websites away from opening my own cardiology practice even though I don't really know how the heart works. My father and brother died from sudden cardiac arrest** and they had HCM. Why didn't I know that?

I stop caring about eating. I must be really sick because I didn't know that was possible.

Mike and I meet Dr. T.  He's young and seems smart, but the atmosphere is serious. HCM is why I've been short of breath (finally, something NOT caused by being overweight and out of shape). It's why I had a very difficult time emerging from anesthesia 4 years ago. He insists that I get an ICD as soon as possible so I don't drop dead. An ICD is an Implantable Cardiac Defibrillator.  It isn't a cure and does nothing to treat the underlying heart condition, but will shock my heart in the unlikely (but possible) event that it goes into a fatal rhythm.  I argue back, armed with my own knowledge from google. Dr. T yells at me. Yells. Mike looks pathetic.

Dr. T doesn't do this kind of surgery. And, against my better judgment, I schedule the operation with another doc.  I hate the other doc. He's flip and sounds like he's selling me a new car.  It's a new kind of ICD, the S-ICD!  The wires don't go in your heart!  There's no pacemaker! It's on your side, under the skin, not up by the collar bone! It's a piece of cake.

I have the operation, during which my heart rhythm goes bad, and they shock my heart twice with those paddles they have on TV.  The pain afterwards is unbearable and I am almost unable to move. I develop a blood clot in my leg. I remember my father getting a blood clot in his leg. It's all just too much too fast. I'm no longer leaving for Europe on October 1. It's not a piece of cake. I've lost 10 pounds. I want to kill that doc.

October 2016:  I'm feeling old. I'm supposed to check my heart rate once a day (it needs to stay low) and stay hydrated. I check it every 5 minutes and obsess if it gets too high. I'm drowning in Crystal Light. I'm waiting for that damn ICD to shock me.

I start to feel sorry for myself. I mean there's this thing sticking out of the side of my body and I can feel the wires in my chest and it hurts like hell. I'm told that I have a mild case of heart failure (sounds worse than it is). I'm not that sick but I feel like a patient. Forget my father; my worse fears are coming true -- I'M TURNING INTO MY MOTHER. Mike should divorce me now, but he won't listen.

Lots of fabulous people develop terrific outlooks on life when faced with a road bump. They choose joy. They don't complain. They become grateful for every day and hug those close to them.  They enjoy sunsets and grow flowers and read good literature and become better people. I am not those people.

I am a slug. I binge watch Grey's Anatomy on Netflix, and spend ridiculous amounts of time on google. The meds I take turn me into a zombie and that's my excuse. I try to stamp but all I do is stare at the paper, scribble some mess, and walk away. My friends and family have been amazing and I need thank you cards, but it's not happening.

Now: As the days go by, the pain recedes, my attitude improves, and I'm returning to normal. I'm driving, getting out, seeing friends, etc. I'm not hugging people, or choosing joy, but I'm beginning to get a grip. I'm incredibly grateful for access to good health care and good health insurance and wonderful friends and family.  My husband is a saint.  I'm not in Aleppo. I feel a bit foolish for making such a big deal about all of it.

My appetite returns.  Damn!

I hope to be back with cards one of these days, but the mojo is still buried somewhere. I'm too busy today to write any more. George has just died on Grey's Anatomy, and I'm freaking out. How can they kill off George??  And, will Izzie survive her brain tumor?  Will Meredith and McDreamy get married? Will I ever choose to get off the couch?

I'll keep you posted.


* The majority of folks with HCM have few or no symptoms and live a full life. But others die from it or are severely affected.  You just never know.
** sudden cardiac arrest is when the heart stops working properly and suddenly stops beating.  A heart attack is different -- it is a when the blood flow is interrupted.