advocating for yourself medically Archives - The Year(s) of Living Non-Judgmentally

Four months ago, I wrote a blog post titled What is heart failure? wherein I

defined heart failure,
explained that one of my cardiologists, Dr. Mark Estes, believed I was in heart failure,
reported that I did not agree with that diagnosis,
tried to de-dramatize the extraordinarily scary term “heart failure,” and
suggested the alternative name of “heart struggle”instead.

My chief cardiologist, Dr. Deeb Salem, has suggested, for years, that I weigh myself every day, to make sure that I’m not going into heart failure. Why? A major symptom of heart failure is the body’s retention of fluid — which shows up in weight gain as well as swelling around the ankles.

Last weekend, as I was dealing with many successive days of unsolved fevers that were apparently not endocarditis (everybody’s main fear for me), I stepped on the scale, at home, for the first time in several days. And I noticed I had gained a lot of weight. My heart dropped in fear and I immediately called the Infectious Disease Fellow on call at my hospital. Here’s my memory of the conversation:

Me: I’m still running fevers.

Infectious Disease Fellow: We’re still watching the many cultures that were taken, including those when you were in the hospital last week. They are not growing anything. Don’t worry, you don’t have endocarditis.

Me: Good. I wanted to let you know something I just noticed. I’ve gained some weight inexplicably.

Infectious Disease Fellow: How much weight?

Me: I’m not sure. But it really doesn’t make sense. I haven’t been eating much.

Infectious Disease Fellow: Okay. Well, keep watching things. If your fever goes up or you’re feeling much worse, come into the emergency room.

I called the Infectious Disease Fellow three times over the weekend. The last time, Sunday evening, I was feeling very lousy — no energy at all and an even higher body weight. I could tell that the Infectious Disease Fellow was not nervous. Why? Because he was focusing on his specialty, according to how he had been instructed — “Above all, watch out for endocarditis with this patient.” We both agreed that I should come into the emergency room if my fever went over 101 — something I knew was inevitable by Sunday evening because it was climbing.

On 7 PM last Sunday night, my fever went over 101 and I told my boyfriend Michael I was heading back to the Emergency Room. He insisted on accompanying me, thank goodness.

When we got there, they discovered I was having trouble breathing, because I had pneumonia AND — for the first time in my life — I was in heart failure. My heart had been compromised enough by the fevers and the developing pneumonia that it could NOT do its job, and fluid was gathering in my lungs.

In the Emergency Room Sunday night and then in my hospital room Monday morning, I felt worse than I have ever felt in my life. I kept panicking, because I was in “air hunger” — not getting the right amount of oxygen. Also, there was a psychological component to my panic — I feared I would not be able to go to Edinburgh in August with my son and I feared I would not be able to have the reparative heart valve surgery we had scheduled at the Mayo Clinic in September.

But soon, because of the right medications, the pneumonia and the heart failure began to resolve.

This photo, from last week, shows my successful cardiologist Dr. Deeb Salem, smiling at how much better I looked, felt and sounded last Monday evening:

Right before I took that successful photo, Dr. Salem and I had successfully discussed the following:

My insistence that somebody talk to the Infectious Disease Fellow on call ASAP about how that person had missed the very important clue that I was going into heart failure.
My concerns about my trip to Edinburgh in August (plane and hotel reservations which Dr. Salem said I could cancel, if need be, with a note from him).
My concerns about my heart surgery in September, which Dr. Salem totally reassured me about, stating I would definitely be recovered sufficiently by then.
How I was right 99.9% of the time about medical issues, beating Dr. Salem by 20% (these were Dr. Salem’s calculations, which I do not necessarily endorse).
The fact that — after all these years of living with my extremely unusual heart — I had finally gone into heart failure (temporarily), and Dr. Salem’s belief that this was more proof positive that the heart valve surgery in September is perfectly timed.

Any failures in today’s post, so far?

Of course, my heart cannot fail to share my recent photos with you: