I checked off another thing on my heart failure to do list.  I went to a support group.  The jury is still out about it.  Will I go back?  Did it help?  Not sure.

Just when I was about to doze off as yet another woman shared her near death experience, Wanda Sykes took the floor. She was equal parts Jesus and equal parts F bomb. She had a valve replacement in 2007 and she recalled every single friggin detail in hysterical fashion.  When she finished her long tale of woe, taking up way more than her share of allotted time, another woman said, “So, you’re fine now.” Translation: you had a one off heart problem that got fixed with a surgery and it was seven years ago so what are you doing here and why are you monopolizing the conversation. 

I wanted a crystal ball, a magic number, an expiration date. He didn’t give me any of those things.  I saw Dr. Jerry Estep this week.  He is the medical director of the heart transplant program at Methodist Hospital. No, I’m not getting a heart transplant.  Not yet, at least.  But Dr. Estep will monitor my disease and manage my symptoms.  

What he won’t do is tell me what is wrong with me, how my symptoms will progress, how long I have, how I’m doing. This is not how I saw this meeting going down.  I wanted more.  He gave me nothing.

Rick liked him.  He’s smart, don’t get me wrong.  He used big, medical words like prognostication, titration, morbidity that would have had me glazed over if he had not been talking about me.

So, I’ll have more testing.  I’ll tweak my meds until the side effects make my life intolerable.  When upon standing I don’t just see stars, but actually collapse. Then we’ll know my blood pressure is too low. It’s a balancing act between which is worse, the disease or the drugs.

He wants me to keep him informed about how I’m feeling. That’s the litmus test.  Do I get more or less out of breath when I climb the stairs?  Is the feeling in my chest pain or just pressure?  Am I more or less fatigued than usual?  How much do I weigh each morning before I eat and after I void? (pee for the lay man).

So, this is how it’s going to be.  I’m going to follow his instructions, take his medicines, weigh every morning, try to pay attention to how I’m feeling vis a vis yesterday or the day before, and just carry on….  I feel cheated.  I want a refund.  I wanted a crystal ball.

For the first time in four months I worked out my upper body at the gym today.  I’ve been focusing on my lower body and cardio for two weeks now.  We’re not talking about Arnold Schwarzenegger type lifting.  Closer to those old ladies in their chairs that you see on Sunday morning PBS.  Buy, hey, I’ll take it.

I am better.  Thank you. Thank you. Thank you.  Your prayers are being heard.  They are working.  My body and my spirit and my general outlook on life are all so much better.  I tried to find a better word than “better”, but there simply is not one that is more fitting.  I AM BETTER.

Once I have another echo cardiogram after Easter, I’ll know whether or not my heart function has actually improved. But I’m a pretty good judge of what’s happening with my ticker, and I say it is better. I am drunk with joy, giddy, hopeful and forever grateful for all your thoughts and prayers. 

“My favorite day,” said Pooh.

Memphis, Tennessee.  I was in fourth grade, Mrs. Lawyer’s class.  It was spring time.  A pleasant April afternoon. Pearline was cooking our dinner as usual. We were doing our homework after swim practice. Nothing out of the ordinary.

I wasn’t quite sure what was going on.  There was something in the air. Whispers. Adult talk that stopped when we entered the room.  The garbage men had gone on strike and our trash was piling up. I heard snippets about trouble makers coming to town to stir things up. Pearline was stealing glimpses of the television much of the afternoon.

Then something happened.  She was crying.  My parents were trying to console her but it was no use.  For the only time I can ever remember, Pearline went home early that evening, before we even went to bed. Things were different after that.  We had to lock our doors. I can’t remember if school was canceled the next day, but it probably was.  The adults were all scared and the kids picked up on it.  

So, history happened.  Right in my home town.  I didn’t understand it then.  It took a long time.

Rick is cheating on me.  Not technically.  I encouraged it. Pushed him, really.  You see, I can’t do the things Rick and I used to do for fun. We’re out here in Carmel with the golf courses, the beaches, the mountains and all I can do is gaze longingly.  I have ridden in the golf cart while Rick plays.  I have taken a shortened walk around the base of the mountain while Rick hikes up and back. We meet at the car.  I take a book with me while I wait. This is not really working for me. Sort of like pouring salt in the wound.

And it’s is not fair to Rick. So, I am on the lookout for playmates for him.  This morning he is  hiking with our friend Jen. They got up early this morning and I slept in. I’m drinking coffee, watching the golf tournament on TV, surfing the net. And I’m perfectly content. Truth be told, all those fun things we used to do had become less fun the past couple of years. There is a thin line between challenging and grueling, between exhilarating and too much. Before I knew there was something wrong, I knew there was something different.  I didn’t look forward to our many activities. I dreaded them. So, I’m OK that he is cheating on me this morning and that I am still in my pajamas, drinking coffee and writing this.

Do you ever think  about tipping points?  I do. Whatever you call it, the break even point, the point of no return, the inflexion point, the crescendo.  It is the point at which things change course. They stop being one thing and start being another.  It is sometimes the straw that breaks the camel’s back. Usually, you only know the tipping point in retrospect.  

I am an active person.  A couch potato would probably still not know she has a heart condition.  My heart works well enough to meet my needs when I am not exerting myself. But because I work out with a trainer three times a week and have for decades, I know the moment that something is off.  When a 10 pound bicep curl becomes suddenly difficult. When I have to lower the speed on the treadmill in order to catch my breath.I can almost guess my heart rate at any given time, just like I can almost guess my weight each day when I get up. I push myself and I pay attention to what my body is telling me.

So, how did something like this blindside me? I’m guessing the cells of my heart have been weakening over time, but the strong cells were able to compensate for the weak ones until they weren’t.  At one specific moment in time one cell made all the difference.  One bad cell replaced one good cell and that was all it took.  The tipping point.

I attended a cooking demonstration the other day.  Chef Pedro showed us how to properly cook scallops.  I’ve cooked scallops and they are tricky.  Very difficult to get just right. Pedro showed us how to brown each side to just the right color until there is only a small white line of uncooked scallop in the middle.  Take them off heat at just that moment and they will continue to cook to perfection on the plate.  That is the tipping point.  But, if you somehow miss that moment of perfection, cook them one whole minute more and they will become edible again.  Not perfect, but edible.  They get a second chance.  Have you ever heard of such a thing?  I’m not sure how this relates to my heart or to anything for that matter, but when Pedro talked about this scallop having a second chance, it brought tears to my eyes.

Last week I went to see Dr. Doyle to have my bandage removed and to have the new Mac Daddy checked out. While I was settling in with my Architectural Digest, a black lady in one of those motorized wheelchairs came in by herself.  That’s unusual because people in wheelchairs usually have someone with them, a grown child or a spouse, sometimes a paid caregiver. This lady was alone and I felt sorry for her because in addition to having a bad heart, she couldn’t walk. 

A middle aged man was already there, silently waiting his turn; that is, until the woman in the wheelchair broke all the rules, she spoke. She wheeled over in our direction. I thought she wanted a magazine. Then she asked if either of us had a pacemaker.  In unison, we both said, “why, yes we do.”  

This was uncharted territory.  Never in twelve years have I ever spoken to anyone in the waiting room.  We wait in silence mostly. It’s a somber club of unlucky souls whose hearts have literally gone haywire. Most people who have heart rhythm problems are pretty well educated about them. There are a thousand ways your heart can mess up. No two people have the exact same issues. Most people with pacemakers can recite their diagnoses like a red badge of courage.  I know this not from the waiting room, but from my neighbors and friends, and of course, the Internet.  

The lady in the wheelchair was visiting Dr. Doyle’s office for the first time.  She evidently had not gotten the memo about proper waiting room etiquette. She had ended up in the hospital after passing out.  It had taken several weeks to stabilize her and while in the hospital, she had a pacemaker put in. She had no idea why she needed the pacemaker, she didn’t know her underlying heart problems and she didn’t know how to properly care for herself.  As she told us her story and her concerns, the man and I exchanged worried glances.

The more she talked the more the man and I both knew that she was in big trouble.  She had not read her hospital discharge instructions.  She had not taken her round of antibiotics. She was using her left arm and exerting herself too much. She was afraid her pacemaker was breaking through her skin.  Before you knew it, we were all three pulling our tops open, exposing our scars.  The man’s scar was old and faint, how mine will look in a couple of years. Mine was still bandaged up from the surgery and so was hers.  We assured her that her wound was healing properly and would look like the man’s in no time.

The lady got called in first and the man and I continued to talk. He developed congestive heart failure 18 years ago when he was 47. He used to get so tired at his job as an electrician that he would hide in the bathroom to rest. A cocktail of medication has kept his heart failure at bay, increasing his EF from 20 to in the 40’s.  I said, excuse me, you’ve had congestive heart failure for 18 years. I had no idea you could live that long. He assured me he had. I told him I just got diagnosed with it. We traded war stories. 

I told Dr. Doyle about the waiting room tete a tete.  I told him I wanted the same drugs the man was taking. He said that there was more to the man’s story. Something about heavy drinking, then not drinking…  I didn’t care.  I just focused on 18 years, 18 glorious years. When I asked him about the woman in the wheelchair, he said that some people can’t be bothered to take care of themselves. I had never thought about that before.  About people who don’t follow the rules (Clearly she’s a rule breaker. We’ve established that).  No wonder Dr. Doyle sometimes seems fed up with it all.  He can only do so much.  

Ainsley checked out my new pacemaker and it is working like a champ.  Dr. Doyle made some tweaks to the settings and had me test drive it.  I walked up three flights of stairs in the building and was only mildly winded. I’d say that was a victory.  He thinks my heart might be a little smaller, which is also good news.  He can tell this by feeling under my rib cage. Go figure. Not very scientific, but good enough.

We won’t know anything for sure until I have another echo cardiogram in about six weeks. I am as hopeful as I’ve been since this whole thing started right after Thanksgiving.  I am going to the gym later this afternoon and see what happens on the treadmill. Once my incision heals, I plan on lifting weights and playing golf and doing whatever else I want until my body tells me I can’t.  I might redecorate my living room, go on a diet, volunteer at church, plan a trip, take a class at Rice, call a friend for lunch. Live.  And I have the wheelchair lady and the electrician to thank for that. I’m so glad she didn’t get the memo.  

Melisse and I were strolling her young daughter down the streets of DC when Evelyn shouted “It’s busterated. Fix it! Fix it! Fix it!”  For the life of me, I can’t remember what got broken.  Some toy, doll, sippy cup.  Who knows.  But it was busted and Evelyn was frustrated and she invented a new word.  Rick and I adopted that word into our lexicon because there was a need for it.

My heart is busterated.  Today is the one week anniversary of my surgery. Try as I might, I just do not know if I feel better, worse or the same.  Probably the same since I can’t tell.  I was waiting to blog about my heart until I had something more definitive.  I was hoping that when I woke up from the anesthesia it would be like having a new pair of glasses.  Ahhhhh.  That’s what the world looks like.  But it hasn’t been like that.

I’m still recovering from the surgery.  It doesn’t get any easier as you age to put your body through that kind of trauma. There’s sleep deprivation, pokes and prods, round the clock invasions, low blood pressure, uncomfortable mattress.  And I can’t even begin to guess the thread count on what they call sheets.  

So, I’m home now listening to my heart.  Gauging my breaths. Driving myself crazy.  I have hosted my own pity party, I have gone down dark roads I had no business being on. But I have not stayed there.  I have taken a shower, I have gotten dressed, Rick has driven me around, we met some friends for dinner, I have a friend coming over today for lunch to give me a refresher course in knitting.  Life goes on. Yes, my heart is busterated, but it is still trying as hard as it can and I must too.

I am not one to back down from a fight. I like to look my opponent square in the eye and take them on.  I love trash talk.  I love match play, mano y mano.  I love competition in general.  Life is a competition.  I have tried to suppress this tendency, to be kinder, gentler.  I grew up in a zero-sum-game household.  There had to be a loser to have a winner.  All of your successes were relative. We were awarded trophies and ribbons based on merit and they were prominently displayed in our family’s den.  We were all about winning.

Rick and I hike.  It’s what we do. It’s what we build our vacations around.  Some of our favorite places are Zermatt, Switzerland, the Lake District of England and the Santa Lucia mountains near Carmel.  All of these places are mountainous, which can be tricky for me because I’m scared of heights.  Over time, the fear started to beat me.  I would get to a certain narrow spot on the trail and despite all of Rick’s encouragement and cajoling, I would turn around, forcing him to either abandon the hike or go on without me. This was not tolerable.  This could not happen.  I would not lose to an irrational fear. 

So, when faced with a challenge that I can’t conquer, I enlist help. Houston does many things well.  One of these things is that we churn out gymnasts.  Bela Karolyi  lives here, for goodness sake.  It was an interesting couple of days on the phone trying to find an instructor willing to take me on.   My mission, to walk on a balance beam.  I found Sean, an Olympic hopeful now teaching cheerleaders to do back flips. He only returned my call because he thought I had a daughter who wanted to take gymnastics.  It took several months to work up to it.  Me and the preschoolers (their moms and grandparents watching through the glass wall) tore it up every Monday morning at 10:30.  I started out on the floor, then worked on a beam sitting on the floor, then a beam six inches off the floor, then a beam with giant mats underneath.  Then, voila, I mounted the beam, walked forward, walked backwards, did turns, fell off, climbed back on, all without a net.  Take that.