I sat in the cardiologist’s office Tuesday afternoon, hoping for answers. I needed something better. I needed to hear him tell me that it was all wrong.
A couple of months ago, I stopped taking my heart medication. I didn’t tell anyone, because I knew they wouldn’t agree with my decision. But I had reached my limit. Not only had I gained over 30 pounds in less than a month, but I had become severely depressed, to the point of suicide. Admittedly, I am depressed without the medication — but this was profoundly different. After a week of stopping the medication, I lost half of the weight and felt considerably better.
I told the nurse at my program that I had stopped. I thought my evidence would be enough that she would agree with my decision. Except it wasn’t that easy. Because both she and I knew that without taking the medication, my cardiac symptoms would be worse — and they were.
I didn’t want to start the medication again. I called my cardiologist. I left a message with the doctor. Two weeks went by with no response. I called again. I told the assistant that my side effects were severe, and that I needed another option. My cardiologist got back to me later that day. You need that medication. There are no other options.
No other options. What kind of choice is that? Take the pill and find your fat(ter) self running into traffic, or don’t take the pill and feel dizzy all the time, but alive. I’m sure that is a lose/lose situation.
There was no room for discussion. I called back offering names of medications I had researched, but received no responses. I couldn’t even get an appointment until two months later. After three cancellations, I was fed up. And so were my supports.
I needed more answers. I skipped my last group therapy session to call as many cardiologists as I could, until I could find one that would take me on — and have an appointment available that was still in 2017. I must have called at least a dozen numbers before I found one that was taking new patients. I made an appointment for a few weeks later.
It’s been so hard to treat my PTSD because most of the medications affect the heart. But my psychiatrist has been willing to work cautiously with medications. He wants to be able to work with my cardiologist so I can be treated the most effectively for both issues. And my cardiologist has been consistently unavailable, making it really difficult to move forward with anything.
As much as I wanted answers, I didn’t want to go to that appointment. I wanted to cancel. I wanted to pretend everything was okay, and that I didn’t need any heart doctor. But it wasn’t just me that was waiting on this appointment. It was my therapist, my psychiatrist, the nurse, and my supports. Because they wanted answers, too.
And they were concerned. My last few x-rays showed cardiomegaly. I had avoided dealing with it, but when the nurse at my program found out, she said I needed to tell the doctor. I knew what cardiomegaly was. I knew it all too well. My father had it. It led to his congestive heart failure, which led to his death. I knew it wasn’t something I should brush off. I knew I also had other symptoms that fit under CHF. They knew I had those symptoms, too, which is why they told me I needed to tell the new cardiologist as soon as I saw him.
But I was so afraid. Afraid of having something else to deal with. Afraid of another diagnosis. Afraid that this somehow meant that I was just like my father, that I had his heart. And if I had his heart, I must be like him in every way. And that’s not who I wanted to be. That’s not how I wanted to live or die.
I never had the records sent to the cardiologist. I didn’t want to deal with it. I really wanted to start fresh. I thought maybe I would I tell him. Maybe. We’ll see how it goes. Let me just deal with the medication issue first.
I didn’t tell him. I couldn’t. I found the words to tell him about my POTS and about the medication. I told him what my doctor said about my inability to work. And it took everything in me not to break down and cry on the floor when he told me the words I never wanted to hear. Your doctor is right. There really are no other options. It isn’t safe for you to work.
Once I heard those words, I knew I was done. I couldn’t handle anything more than I had already been handed. He explained why there was no other medication. He said he could tell me all of these other treatments that people came up with, but none of them work, none of them do what this medication does. I could drink all of the fluids and salt everything I eat and it still wouldn’t be enough. Yes, it will cause me to gain weight. And I think, over time, I could probably learn to deal with that. But I can’t learn to deal with wanting to die every day. That’s not a side effect I can tolerate for the rest of my life.
I wish there was an easy answer. I wish I didn’t have to take this medication. I wish I could go back to the way things were before all of this happened. But that’s not reality.