Heart Chronicles #18: Risking Our Lives, Part 2

1730_Stoopendaal_Map_of_the_World - low

( Map engraved by Daniel Stoopendaal, 1730)

Each body is a map of a universe, a living, breathing cartography. We carry the routes of our life travels within our flesh and bones, and our powerful feelings and thoughts can detour or bolster health. Just ask any heart patient how the most responsive and crucial organ in the body must be cared for: just like a beloved. Most of the time we can count on microscopic cells and complex systems to respond heroically and rejuvenate what is necessary.

But on the stairway that day, perched between safety and peril, it seemed all my body’s wisdom was failing. It was clear I had to start the brainstorming phase. But how to explain to anyone else what I didn’t understand?

By early March 2013 an old problem with low-level dizziness worsened. It hit me before I opened my eyes in the morning, unmoored my day, then haunted my nights. Between my vertiginous head and trying to stay upright on increasingly unsteady feet, life certainly lacked buoyancy. I ended up in physical therapy for the inner ear issue and it resulted in excellent results. Of course! I thought. It was that old beast, first diagnosed as labyrinthitis in 1999. Relief replaced dread. I could handle this one. Six weeks later my head quit its surprise spinning.

Still, if I was honest, my gait wasn’t yet quite right. I couldn’t perform basic balance exercises well. D., my physical therapist, noted my legs were far weaker than they should be for someone my age and activity level. I was still trying to stay active daily by walking two miles, and would hike on week-ends.
I took a breath and started to enumerate the odd symptoms. It had been gradual, cumulative. I had ignored most things, like little spasms and ticks or the day-long cottony brain. The drugged feeling like I hadn’t gotten sleep enough although I usually did. I had not been alarmed a long time. The last six months? A bit frightening.

Leonardo Da Vinci's study hands

( Da Vinci’s Study of Arms and Hands, 1474)

It was the first time I stated it all aloud and fear grabbed me, made my innards quiver.

“Poor muscle control, weakness in legs, arms with a weakening grasp–have a very hard time opening jars or holding onto pens or really anything. Cursive is terrible when it used to be nice. I have burned myself badly with a curling iron many times because my hands and arms are so weak they just lose their grasp. I can’t seem to routinely control where I want to place my feet or hands. I drop way too many other things. I even just…fall over. I lose strength as my feet hit the ground. I have deep random leg pain and cramps that wake me up at night. In fact, I have little muscle spasms all over, at times. I can’t calculate what to do with my body like I should. I mean, we usually don’t even think about it, do we? It’s like it belongs to someone else…I reach out a foot or arm…and nothing works right. I feel… spongy, unstable even sitting, tired out. I get funny nerve shocks. My mind is pushing through a cloud and sometimes I feel like I lost a minute… Each day takes all I have, especially the last six months.”

There. Done. I had lowered the last barrier to finding out the truth. I wanted to laugh and say “I feel like an alien sometimes–body snatchers got me..” but it wasn’t humorous now that I had spoken of it. Speaking dragged me out of denial, that age-old coping skill I had taught my addiction and mental health clients about. It works well, until it doesn’t.
Still, I worried D. would find it strange, extraordinarily so. I waited as she put a finger to her lips and thought a minute.

“Well, I have to tell you I have some other heart patients I have treated. Some of them take statins like you do. They at times report symptoms like you describe. I’m going to get you some research I found and then you might consider calling your cardiologist.”

My mouth dropped open. Statins? The now-common cholesterol medication that also supposedly decreases arterial inflammation? I didn’t have high cholesterol but with heart disease “high” means another thing altogether. I did have inflammation issues. I had taken a statin since the first stent implant in 2001, a second in 2003. It was deemed necessary. What would Dr. P., trusted cardiologist, think?

I took home the research and studied it. There were my symptoms and more on pages of paper. “Statin myopathy”, translation: muscular weakness. “Statin muscle toxicity”. Muscle pain, fatigue, heaviness, stiffness, cramps, balance problems with attendant coordination issues. The papers went on to describe much of what I experienced but not all. The most startling note was that physically active patients experienced more symptoms due to intolerance of lipid-lowering therapy. I read one study that stated around 10% of those who took Pravastatin at 40 mg, like myself, suffered from muscle-related symptoms. Many patients didn’t note the symptoms as they were gradually induced and often dismissed at first. (Note: taken from Cleveland Clinic Journal of Medicine June 2001 vol. 78). No less than fifteen other diseases could be confused for statin muscle toxicity. I read the other indicators of those most at risk of myopathy but they did not ring a bell. It could be just my luck of the draw. I made an appointment to talk with Dr. P. for whom I hold much regard.

As always, he opened the door with a warm smile, shook my hand and got down to business. I had expected that he might take it all in and say, sure, there is some reason to think the statin might be the issue, and then remind me that I had aggressive coronary artery disease and required this treatment for as long as I lived. The end.

“Get off it at once, ” he said. “You look ill, you’re having a terrible quality of life and I wish you had complained before. One to two percent of my patients can’t tolerate statins and have similar negative effects.”

“It’s been subtle over the years; I didn’t realize it could be anything serious until recently. But it has been bad…”

His green surgical scrubs and rubber clogs were still on and for a second I wondered if the person he had operated on was recovering well. His eyes held mine. “I want to make sure it’s the statin. If it isn’t, there are some sinister diseases like MS and ALS that we need to investigate…”

Dr. P. always tells me the truth. It is what I like to hear and part of his skill. He noted it was a risk to take but my cholesterol was quite low at least on the statin, blood pressure was very good and I had taken excellent care of my overall health. I was to return in six weeks. I would either feel better or I would not. After he listened to my heart–“sounds good”–he put his hand on my shoulder and gave it a small squeeze. I knew that gesture. It meant he was hoping for the best, cared that I get better.

What does a person do with information that is affirming while not necessarily reassuring? I did nothing. I stopped taking the statin and went on with my life. I prayed for Divine guidance and compassion and got both. I wrote and walked every day and enjoyed the outdoors as always. After a week, I felt something change, a little less fatigue, a few less twinges and spasms. I said nothing to my husband but waited for him to remark on my gait and energy. Within ten days Marc told me what he saw.

“You seem different. It’s hard to explain, but you’re thinking and moving faster and better. You’re stumbling less, I think.”

“Yes,” I breathed and went on with my life.

And so it went. Each day I felt more awake in the morning. My feet hit the floor solidly. I could get to the bathroom without tilting and grazing the walls. I reached and grasped onto things. My feet recovered quickly if they stumbled; they rarely got hung up. Walking felt so good and I felt so strong that I wanted to walk another ten blocks, crest another hill in the forest. My mind cleared so that words clicked along without hesitancy and words rose out of a sunny place, not a gray, misty one. My typing could almost keep up with my thoughts so writing was a sweeter release.

The experience that told me I was on the road to health was how my feet wanted to dance. I am not a dancer now but I love to be in a lot of motion (unless writing) and adore music. One morning I felt acutely attuned to vast energy moving through my limbs, down to my toes, throughout my whole body. My feet felt strong, steady on the floor. I began turning and dancing. It felt like being set free. It was a perfect combination of lightness and gravity. I knew then I was going to be alright. In fact, I feel better than I have in years, long before I fell gasping to the dirt in the Columbia Gorge years ago, on the precipice of death.

191273_243barefoot_dancer

When I saw Dr. P. in six weeks he said upon entering the room, “You are so much better! I can see how you sit, like you are ready to get going. You LDL went up forty points, so we do need to watch that. You owe it to yourself to stay alive in the best way possible, which means having a good time being here. You’re tough–most people wouldn’t put up with those symptoms so long.” He laughed softly. “So since you’re so tough, get out there and get to work! You must increase your exercise so it is more vigorous and eat even better. Call me if you have any problems, and don’t wait to call. I’m very glad you’re better.”

Can we celebrate? Is there a truly happy ending here? I don’t yet know. It’s much more than I had hoped. I thanked D., my physical therapist, for her knowledgeable response. Medicines can help or harm; this one is no good for me, at least right now. I have relied on it a long time so getting off it is risky in a way. I will research alternative aids. I will eat more fish and take fish oil, ramp up my exercise until I can’t do any more, get my lab work and meet Dr. P. in six months to re-evaluate. I was never told coronary artery disease would be easy to treat or I would live a long time. I agreed from the start of this business to do whatever I must in order to be able to keep diving into this treasure hunt called life. I want to keep this body in the known world. We all take risks, some even unknown, but in the end we exit anyway. I just want to make the most of it.

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9 thoughts on “Heart Chronicles #18: Risking Our Lives, Part 2

  1. Sister Cynthia—I am soooo happy you are back to your normal energetic fabulous self! What a journey you are on!!! Also you are truly a WRITER. Mom was so right on to keep pestering you in your dreams to WRITE!!! Love, Allanya

  2. Thanks Cynthia for writing this. I have had three bypasses and a Pacemaker.in the last 6 years. As you know I am very old (89) but sound of mind. Thank God for that. I have been on Statins for ever so long and my muscles are like rubber. Last summer it seemed all I did was sleep…well to make a very long story short,I asked my Cardiologist since everything else was OK could it be the statins? His reply was”it could be…get off of them”> So I have, I can’t say that I’m perfect after all I’m 89 years old BUT i don’t sleep as much..and I am on a summer long trip visiting my three children and Grand Children and Great Grand Children.. Something has changed and I pray that I continue to improve. My PM doctor doesn’t know I am doing this, so it will be interesting to see what happens when I go back.. I am so glad that you are feeling so much better,

    Your friend, Dolores

    1. That is wonderful news-so glad to hear it! I will keep you in my thoughts and prayers for more healing. But that you are now 89 and doing this well with tough heart troubles is inspiring–thanks for much for that, and for reading!

  3. whew – you had me worried for a few days there! i’ve heard bad things about statins before and have vowed never to take them. i’ve lived long enough by now to have almost been killed by the wrong medications or combos thereof,. and by doctors! OMG, doctors can be dangerous, not to mention hospitals! so i’m thrilled you have a doc you trust. that is crucial with a chronic illness. and i love your determination to get the most out of the treasure hunt you call life. way to go, cynthia!

  4. I am so glad you wrote this. I’ve heard that statins can have many side effects, all drugs do. Unfortunately, people would rather take a drug than change their behavior. I get that it’s easier, but we need to beware of the motivations of the drug industry. I always say that I won’t take any medication that’s advertised on TV. Meds of all kinds have caused me so many problems in the past, from reduced quality of life to life-threatening anaphylactic shock that I finally decided to skip them altogether unless I’m facing immediate death. Great essay!

    1. Thanks, Diane. Hope you read Part 1 as well in order to see changes finally caused me to seek advice. I find that we too easily believe pills help when less can mean much more. I have whittled my RXs down to what SEEMS crucial for my heart and a couple other chronic issues. But the surprise was that I managed alright for many years–then became so ill. Some patients do not recover completely or as well… I appreciate your praise a lot; I hold you in high regard.

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