Sometime in the Spring of 2019

Miss Nita might actually hate being here more than I do.    She’s 86 or 87 or 88.  She’s not entirely sure. She’s a widow.  She complains about her doctor and her over-protective daughters.  She always looks elegant and put together. I think her caregiver gets her ready.  She would rather be home drinking coffee and watching TV.  Me too.

Alejandro is on the stationary bike next to mine.  We trade war stories. He in Spanish; me in English. He has already had his transplant.  I can see the top of his scar above his shirt collar. He only has a few more weeks left and the relief is obvious.  I just started.

A couple of the men have on work shirts, their names embroidered above the breast pocket.   Some are overweight, some are not. Some women, but mostly men. There is not much talking.  At least since Virgil left. He mostly talked about hamburgers. He made us all laugh.

It’s just another day at cardiac rehab.  It’s not that much different from the gym, except it’s at the hospital and we are all hooked up to EKG’s.  Cori, the physical therapist, barks out orders, while Whitney, the nurse, monitors our heart rhythms on a screen. One man, the youngest and healthiest looking of us all, went to the ER the other day with a funky rhythm. He’s OK now.

Heart disease does not discriminate.   We are different people, one disease, pedaling to nowhere because our doctors told us to, whether we like it or not. And I don’t.

Sometime this past Spring……..  Talk about a rude awakening.  After hitting my snooze-button a half dozen times, I willed myself out of bed.  The only problem was my legs weren’t ready to get up.  I was greeted by our concrete floors.  Really cool look for the new loft condo, but hard as hell on the knees and elbows.  Ouch.

This was my second fall of the week. Unfortunately, Rick witnessed one of them. So, I now have an appointment with a neurologist.  I’ve no idea if this is connected to sarcoidosis, poor circulation, congestive heart failure or some new, unrelated neuropathy.   I’m not ruling out the latter as both my father and brother had neuropathy.  I have inherited the worst health problems of each of my parents, it seems.

Besides these frustratingly weak legs, I feel that my overall health has been steady.  It’s hard to tell, because I get accustomed to each gradual decline.  But my heart numbers have been stable.  My lungs have actually improved a bit after two years on steroids.  But I am getting weaker by the minute.  Sometimes my legs are so wobbly that I can’t walk at all.  It usually passes in a matter of seconds.  If I can sit down or lean against something, I can wait it out.  Otherwise I plop down in a controlled fall. This has never happened in public. Thank goodness I don’t leave the house much.

The biggest challenge right now is staying in the fight.  All these health issues and uncertainty take an emotional toll.  As does accepting my limitations. But what choice do I have?  As I’ve said before, I choose to feel.  Feel the good.  Feel the bad.  Go off the radar when I need to, but come back eventually.  I’m back.

Update    There has been no definitive diagnosis about my legs.  I completed two months of cardiac rehab  to strengthen them.  I think it helped.

Both of my test results have been posted to my online chart. Nothing earth shattering. Same old, same old. I’m holding steady. EF of 25 and MVO2 of 16.1. I’m not going to run a marathon, but I most likely won’t kick the bucket, either. I see my doctor next week and we’ll discuss the particulars. Thank you for all the thoughts, prayers, lunches and cards. I promise not to throw a pity party more than once a year.

Yesterday I had my annual tests to see how my heart failure is progressing. I won’t get the results for a couple of weeks. Cancer survivors who have annual scans probably understand how I feel. The lead up was bad. The anticipation of the actual tests themselves. These are not invasive tests (I’ve had plenty of those), but they are reminders that all is not well. The worse part of the day was the goo on the back of the EKG pads. I’m allergic or something. They leave round, itchy, red welts. They go away soon enough, but it’s annoying none the less.
One of the tests is a stress test that measures my maximum oxygen usage. You’ve probably seen elite athletes taking this test. It’s sort of creepy, in a Hannibal Lecter kind of way. You wear a mask while walking on a treadmill. The oxygen is recycled and measured. It’s a little claustrophobic. I had dreams of flatlining during this test. I didn’t. Yay. But I did get really out of breath.
Today I am worthless. It took me a couple of hours to decide between a bath and a shower. I didn’t have the energy to take a shower and I was afraid I might drown in the bath tub. I decided on a shower. I survived.
Now I’ve been staring at my meager to do list. I don’t have the will or the energy to get started. I’ve been googling end stage heart failure all day. Preparing for the worst. I did the same thing last year. The end didn’t come then and it probably isn’t here now. It’s just an emotional roller coaster ride that some days seems like a death sentence in and of itself. The dread and worry can be just as crippling.
When I can’t face it, I crawl into bed. I don’t have the focus to read a book. Thank goodness for Netflix. I’m watching the last season of “The Fall.” It’s good, but high creep factor. I like to look at Jamie Dornan. I never saw any of the Shades of Grey movies. No desire to. But he is good. I’m not fond of Gillian Anderson’s whisper voice. But she’s effective in the role.
Thank goodness Rick understand when I have to hide. He has no expectations and he gives me room. I’ll surface soon. Maybe even tomorrow. Until then I’ll binge watch videos and research my demise.

The last time I wrote, I left you hanging, sort of like a season-ending cliffhanger. As you recall, I was sick in bed, couldn’t eat, was coughing up a lung, short of breath at rest and generally sick as a dog. So sick, in fact, that my defibrillator shocked me. But I’m glad to report that I’m OK. Turns out, my respiratory infection triggered an asthma attack, which mimicked some bad heart juju. I’ve added inhalers to my daily pharmaceutical regimen and I feel much, much better. Hooray for big pharma.

It’s been a tough winter. These allergies have really gotten me down. I finally figured out that tree pollen is the culprit. Unfortunately, we followed the budding trees all over the country and managed to hit each region just as that yellow poison was at its peak. An all too familiar pattern has emerged, brought on by my heart failure and resulting poor health. A sniffle turns into a full blown cold which turns into a sinus infection which has me pleading with God to take me now. My mom used to say, “I’d have to feel better to die.” She was right. By the end of March, I was bedridden, sleep deprived, too nauseated to eat and banished to the guest room because of my incessant coughing. This sorry state lasted for almost two weeks. Just when I thought things couldn’t get any worse, they did.

It was Friday evening, April Fool’s Day, but this was no joke. It was around 11:00 in the evening. Because I could only cat nap and had to do that sitting up, I was sort of cocooned in a mountain of pillows. I was waiting for my cough-medicine buzz to kick in, when all of the sudden something happened. I am used to weird things going on with my heart and I am usually not scared. This was different. I didn’t recognize it. It was violent. And it knocked me out. Unconscious. Thank goodness I was already lying down.

When I woke up, I shook it off, got up and went into the bathroom. I thought maybe I had had a stroke. I was trying to remember all those tests you do if you think someone’s had a stroke. Isn’t there an acronym for it? I couldn’t remember, so I started with my face. I smiled. It wasn’t crooked. That was good. I raised my arms. Was that even part of the test? I don’t know, but I did it anyway. They both worked and they were in sync. Good. Then I tried to say the alphabet backwards. It’s hard. I’m old and tired and my cough medicine was kicking in. But I did it. A few letters at a time. I figured I didn’t have a stroke. Maybe I had a heart attack. That seemed unlikely,though. I don’t have any cardiovascular disease.

Then the light bulb went off; I think my defibrillator shocked me. But it didn’t hurt. It’s supposed to hurt. That’s what all the literature says. It’s supposed to feel like getting kicked by a horse. But it didn’t. It was intense, yes, painful, no. But what else could it be? I spoke to my doctor the next day. Yes, indeed, my defibrillator had shocked me. I have a monitor that sends nightly readings of my device to my doctor. How high tech is that? He ran a few tests and determined that I was OK. The defibrillator had done what it was supposed to do.

It’s been almost a month and it hasn’t happened again. I’m over my infection and I’m feeling better. Physically. But I’m scared. Scared to take a bath, scared to drive on the freeway, scared that it will happen again when I’m not in bed, scared that my ventricular tachycardia have come back, scared that I might have end stage heart failure, scared that I will die a horrific death like my mother did. But one thing I’m not scared of. I’m not scared of where I will spend eternity. Not at all. There’s a lot I don’t know, but one thing I do know, I know my redeemer lives.

I haven’t reported on my health in a long time. This blog was supposed to be a chronicle of my disease, Cardiomyopathy, and the resulting Heart Failure. It turns out, my health is not all that interesting.  The excitement of Emergency Rooms, surgeries and new-fangled medical devices has been replaced with stupid little pills that cause weight gain, dizziness and constant trips to the bathroom. This makes for dull reading.

But to keep you updated, which is after all the goal, you should know that I recently had a round of tests to see how my heart is functioning. Everything is exactly the same as it was a year ago. That is good news. At one time, I was hoping for improvement. But no decline is good.

For those of you in the medical field, or who will google this, my EF is 22 and my MVO2 is 16.6. These numbers suck, but they’re holding steady and I am able to live a relatively normal life.

My life is different, make no mistake about that. I spend a lot of time waiting in the car. I have handicap license plates.  Gone are hikes, 18 holes of golf, sometimes even running into the store. Yesterday, I did some volunteer work that had me standing for three hours. I spent the next three hours at home flat on my back. But I’m still here, still alive and kicking and I am grateful.

And I no longer think about dying all the time.  That is the biggest change.  I spent most of last year thinking my time horizon was short, very short.  But now I just don’t think about it. I just live.

So, you’re updated.  As my brother said, I’m above ground and above ground is good.