It happened at Supercuts just before Christmas.  Rick was waiting for his haircut alongside no other than Dr. Doyle, my long time cardiologist. The fact that these two successful men were waiting in line for a $15 haircut is another story for another time. So is the fact that Rick gets his hair cut every ten days.

I was a little surprised that Dr. Doyle even connected Rick to me or that he would be conversant with my case out of context.  He must have thousands of patients.  But I have been seeing him for 13 years.  I’m younger and fitter than his average patient. I visit his office at least three or four times a year, sometimes as often as two or three times a week.  He’s performed four operations on me, numerous in-patient tests, as well as meeting me a couple of times in the ER.  So, I guess I’m a memorable patient. Plus my case has not exactly been text book.

I don’t know all the details of what they talked about.  Rick didn’t tell me and I didn’t ask. But just a few days ago Rick brought up their conversation.  He said that Dr. Doyle told him that he wished I would embrace my wellness.  While that sort of threw me for a loop, it didn’t really shock me.  Dr. Estep, my CHF cardiologist, more or less told me the same thing.

Cardiomyopathy is an unpredictable disease.  It goes in fits and starts.  You can deteriorate rapidly and then level off for long periods of time.  There seems to be no explaining or anticipating the course it takes.

For me, 2014 was a year of digesting.  I spent most of the year getting my head around the fact that I have cardiomyopathy, a degenerative and incurable condition.  I was quite overwhelmed at first. And also quite distraught.  So, on the recommendation of my good friend Heather, I started blogging about it.  I had a lot to say. Then I said it all, so I started writing about my family. I wasn’t sure how much time I had left, I was in a hurry.  I wrote a lot.

Then a funny thing happened.  I didn’t die.  In fact, here I am.  It’s 2015.  On Monday, I turn 57.  I made it another year.  And I haven’t gotten worse. I have leveled off. Praise God!

So, I’m taking the doctors’ advice.  I am embracing my wellness. Look out 2015. I’m back.

Yesterday I went to the heart failure doctor to check in.  I haven’t been since July. He only sees patients on Tuesdays.  It’s usually over an hour wait.  It’s a good thing I don’t work, otherwise I don’t think I’d have time to be sick.  I bided my time in the waiting room talking to my nephew Christopher on the phone and taking selfies of my new glasses.  They’re really cool.  They’re reading glasses called Eyebob’s.  I had prescription lenses put in.  The frames only cost $75.  The lenses, however, cost $500.  It’s expensive to wear glasses.

Finally the nurse called me in.  She’s the check in nurse. She asks me to list all of my medicine, even though they are the ones who prescribe all of it.  She’s supposed to weigh me, but she was too lazy to do that.  She just asked me how much I weighed.  I lied, of course.  Then she took an EKG.  It said that I was having an acute MI. That’s heart attack in layman’s terms.  I asked her if she might not want to go get help.  She agreed.  She stepped out into the corridor and asked someone if we should be worried.  He said no. So we weren’t.  She then asked me where I got my outfit.  I told her in Wimberley.  I’ve had to get all new clothes since I’ve gained weight. She said, what size do you wear.  I told her. She said, no way, that’s what I wear and I weigh XXX (35 pounds more than me, but remember, I lied).  I said way.  She said no way.  We left it at that.

She usually bashes men.  Rick hates her, but Rick wasn’t there this time.  He’s out of town.  He’s in Santa Barbara on business.  I should have been with him, but because the doctor only sees patients on Tuesdays, I couldn’t go.  It’s just as well that Rick wasn’t there, because Magdalena was in a bad mood.  Without Rick there to bash, she complained about the doctors.  I complained about the wait. She said they’re just in it for the money.  I hoped not, but decided to keep my mouth shut.

Dr. Estep finally came in.  He’s too nice to get mad at.  Plus he will some day get me a new heart, so I have to stay on his good side.  I asked him about the EKG.  He said it’s just weird because of my pacemaker.  Whatever.  I didn’t feel like I was having a heart attack, but it was getting a little harder to breathe.

He asked me how I felt.  I told him.  He was particularly impressed that I can walk 2 miles on a treadmill.  No incline.  In air-conditioning. At a snail’s pace.  But he was never the less impressed.  I think I’m like a Ninja Warrior of the heart failure patients.  There should be a reality show.

Since I’m feeling pretty good, he decided not to start all that pre transplant testing.  That’s fine with me.  I figure that by the time I actually need a new heart, we’d have to repeat it anyway.  But I told him that  I would like to know more about what has caused my heart muscle to self destruct.  Also, I want to get some idea of how rapidly it is happening.  Is that too much to ask?

So, we are going to try to establish some baselines and to see if a more accurate diagnosis can be made.  The mother lode of diagnostic tools was the MRI and that was inconclusive because of the shadow cast by my pacemaker.  We’re going to try a biopsy in a couple of weeks. That means another trip to the Cath Lab.  My ninth or tenth.  No biggie.

He also upped some of my medicine and will closely monitor my kidneys and liver.  That means returning to the office to give blood and pee in a cup.  Giving blood samples has become a routine part of my life. I’m a pin cushion.  No biggie.

So, you’re caught up.  I’m still here. I’m functioning fairly normally. It’s all good. Thanks for the prayers and concerns. Maybe we should add Magdalena to the prayer list. She’s not happy.

I’ve been feeling great the past six months.  So great in fact that it has been possible to forget there’s anything wrong with me.  Ever since I got the Bi-ventricular Pacemaker, I’ve been able to make it through the day without napping.  I haven’t had any ventricular tachycardia; I have had lots of energy and my color has been good.

But this week has been different. Declines in my heart function usually show up first in my emotions.  Like some psychic bell weather.  A general feeling of doom and malaise. An overwhelming fatigue. A lack of interest in anything and anybody.

And there are also changes in my behavior. It’s become routine for Rick to drop me off at the curb and then go get the car to pick me back up.  I haven’t felt like helping with the groceries or meal planning. I’d rather find play dates for Rick than have to engage in social activities.  I’ve been hitting the wall mid afternoon, feeling so weak that I can barely stand.


It’s hard to stay upbeat.  To get up each morning and put on a happy face and fight the good fight.  This morning I told Rick that we need to seriously discuss my care.  There will be a time when we will need outside help.  When we will need to hire someone to relieve him.

Not surprisingly, he said we are far from that. That I’ll get a new heart before then.  Maybe. Maybe this bad patch will pass.  Maybe it’s just beginning.  Maybe it’s just the heat or allergies or aging. Maybe.

 

It came to me this morning. The new blog title. I was outside on the deck reading Jesus Calling and saying my prayers.  I looked around and noticed all the empty spaces that were filled with flowers last year.  Gabriel planted a lot of flowers before we got here.  But last year I went crazy. I added to what the gardeners had beautifully prepared for our arrival. I must have gone to Grigg’s Nursery a half dozen times. There were pots of flowers in every nook and cranny. 

We’re going to be here another two months. There’s still plenty of time to plant some more flowers. But I’m just not interested. What Gabriel planted is good enough.  It’d be a little extravagant, don’t you think? Planting and watering all of those flowers that will be enjoyed for such a short period of time.  After all, I don’t live here year round. I’m just spending the summer, just passing through.  

Then the tears started.  They start so easily.  Last night Rick and I went to see The Chef.  No, I didn’t cry during that movie.  It’s pretty funny, actually.  But I did cry during two of the trailers.  Four minute clips and I was boohooing. Anything can make me cry these days, but it’s usually something that reminds me that I’m on the clock. I was crying out there on the deck, reading my Bible study and looking at the flowers that weren’t there, because I realized that it’s all for a season.  It doesn’t last.

Since I’ve been diagnosed, one of the stupidest things anyone has said to me, I suppose in an attempt to cheer me up, is that everybody is going to die. That’s some crazy shit, huh?  People are so uncomfortable around terminally ill people.  Especially people who look healthy. It makes them nervous. They say crazy things. They can’t help it. It’s okay. 

But what I think my friend was trying to say is that we’re all terminal.  We’re all just passing through this life on our way to our heavenly home.  Those of us with bad diseases just happen to be a little more aware of it. I don’t know how long I  have.  I don’t know if I’ll get a new heart or if this one will last years.  I don’t know how long I’ll continue to feel good.  I don’t know anything.

So what do I do with the not knowing?  What do I do while I wait for the unknown to become known?  The way I see it, I have two options.

Like Andy said in the Shawshank Redemption, you either “get busy living or get busy dying”. I choose living. I will enjoy God’s creation and the many wonders of being alive for as long as I can. Granted, some days I’ll have more energy than other days. But I won’t compare my todays with my yesterdays.   I will use whatever energy I have, lots or little, to explore the loveliness that life has to offer.  I will experience the highs and the lows. And there will be lows. I will share people’s joys and their pain and I will continue to cry.  I will cry because I’m scared and I’ll cry because I don’t want it to end.

But it does end.  For all of us. Some day. We just don’t know when.  It’s not forever.  It never was. We’re all just passing through.

Yesterday was the first day of summer and Rick and I got the heck of Dodge.  We made our annual sojourn from Houston to Carmel where we escape the summer heat. While I can’t technically explain it, having cardiomyopathy makes me heat intolerant.  Something to do with not enough circulation to both cool my body and provide blood to vital organs. 

Then it occurred to me.  The tree might outlast me. Why in the world am I obsessing about it. Why don’t I just enjoy it while it lasts.  Take one day at a time and all that…  I tried it.  It lasted a couple of hours.  Then I thought, how about a big patio umbrella.  It doesn’t use any water and it won’t die.  

I got on a plane and went to a place where I wasn’t sick. For two weeks. no blogs, no therapists, no doctor’s visits, no support groups.

I walked the streets of London, kicked it’s ass actually. I ate curry and drank tea and got rained on and rode the bus and saw a few plays. It was wonderful. 

We’re about to land in Houston and I’m about to be sick again. Houston is where I’m sick.  Shit.

I wrote the following paragraph a couple of weeks after my surgery in February.  Funny thing, I started feeling better so I never posted it.  But today I found out that I’m not getting better.  In fact, I’m worse.  Despite the surgery and the medications, my heart is giving out. Rick and are are still going to Carmel for the summer. When I get back in the Fall I will receive all the necessary tests to prepare me to get on the transplant list. Hopefully I won’t need a new heart for a long time, but cardiomyopathy has a mind of its own. Also, I will have to get a lot worse before I’m eligible. That involves some incredibly unpleasant things that scare the living hell out of me.

So, here’s how I felt in February.  I had a reprieve of not knowing for a few months and I actually enjoyed life with family and friends.  Now I know.  I always said I wanted to know. And now I do. 

“I don’t know when to throw in the towel.  The surgery has not made me better.  I’m exhausted.  I’m winded.  I’m depressed.  Rick and I have been looking at apartments.  We don’t know how much longer I can climb the stairs.  Today I looked into shower seats. Frontgate has a nice teak one.  I haven’t gotten dressed since Monday.  I can’t fit into anything.  I guess I’m still bloated from all the IV fluid.  Rick went into work today which was nice for me because I didn’t have to pretend to be OK.  I’m not OK.  I’m scared. I’m upset. I’m mad.  But tomorrow is another day and who knows, maybe I’ll be better.”