The Tin Man

When I had my first stroke in May 2010 I was lucky enough to have a neurologist that went searching for the cause. The cause ended up being a congenital heart defect that had gone undetected my whole life. I never had a heart murmur, chest pains, or shortness of breath. But I had a stroke at the age of 29. I had open heart surgery to correct the hole in my heart and subsequently had another stroke. Since then, I have had a lot of problems with my chest.

I remember very clearly what happened when I saw my heart surgeon after my surgery. I had made an appointment with him because I was experiencing moderate chest pain and shortness of breath with very little exertion. It was quite a while after my surgery. The pains of the procedure had faded and a new pain had set in. My cardiologist wasn't being much help so I thought I was getting a second opinion. The surgeon came in and sat with me for a moment. Literally. His clinical diagnosis after one minute was that I was depressed and that all the pain was in my head.

Eventually the ache did die down but it never fully went away. I never was able to get back up to my previous level of activity because I have never been able to breathe again. I have always had shortness of breath after minimal activity. It doesn't stop me from trying. During the school year, I walk two miles everyday walking the kids to and from school. I do yoga when I can. I still run errands and do things around the house. I'm waiting for this Texas weather to cool down so I can work in my yard more comfortably. So I am not inactive. Just not back to my old self. In March, out of the blue, the pain came back and the shortness of breath got much worse.

Off to a new cardiologist I went. At first I really liked him. He seemed to be excited about the challenge I brought him. He got the old test results from my hospital stays and started ordering new tests. When everything came back normal he started running out of things to test. My EKG was normal. My echo-cardiogram was as normal as can be for someone who had heart surgery. The only blood clot I have is the one in my brain. My stress test was normal, aside from the chest pain and shortness of breath. My lungs are clear of any blockages. My oxygen levels are great. In fact, the only thing that has come back abnormal are my triglyceride levels, which no one has a good explanation for. They are high even though my life style would actually lower them. I've always been a mystery.

After my last test, his nurse called me to give me the results and to schedule a one month follow up. I asked her if there was anything I could do in the mean time to help with the chest pain and shortness of breath. And she said no and proceeded to schedule the follow up. I cried. But I was crying a lot those days. I remember the last time I was in his office. This doctor who had seemed so excited to have a challenge had come to standstill. I saw it in his face. I have seen that look in many doctors before him. And it's not his fault. Not really.

No one knows what to do with me. What do you do with a girl who had two strokes right before her thirtieth birthday? If I was in my eighties, maybe feeling this bad all the time wouldn't be so abnormal. But here I am, in my thirties, trying to raise my kids and have a normal life. Everything has changed so fast that I would really like to have the stability of keeping the same doctors. My follow up appointment is on Monday. I hope he either has new ideas or good news. I guess we'll see.

“I think you are wrong to want a heart. It makes most people unhappy. If you only knew it, you are in luck not to have a heart.” 
― L. Frank Baum, The Wonderful Wizard of Oz