Day 1295: What is heart failure (part 2)?

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:

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

  1. 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.
  2. 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).
  3. My concerns about my heart surgery in September, which Dr. Salem totally reassured me about, stating I would definitely be recovered sufficiently by then.
  4. 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).
  5. 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:

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Of all the dozens and dozens of songs with the word “Heart” in the title, how can I successfully choose the right one for today?

How about this one?

 

Heart-felt thanks to all those who never fail to warm my heart every day … including you!

Categories: personal growth, photojournalism | Tags: , , , , , | 43 Comments

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43 thoughts on “Day 1295: What is heart failure (part 2)?

  1. Oh my. Glad meds are helping resolve multiple issues. All sounds very scarY. Glad you have such a excellent doctor(s) and are in a good place for care. Thinking of you as you mend.

  2. Debbie Terman

    Thank you so much for sharing that story. Sometimes we turn to the professional experts, and then it turns out that our own mind was the actual expert. (Of course, we need those professional experts on our team to help solve the problem.) You are an inspiration for self-advocating!

  3. I’m so glad you succeeded in feeling better. It’s said that successful people really have more failures than successes, that they succeed because they try more. It’s fantastic that’s not true in your case–and I hope you keep up your 99.9% success rate.

  4. How very frightening, Ann. The words “heart” and “failure” just don’t sound good together! So glad you are better.

  5. amusez798387

    I am glad you are your own best advocate and have Dr. Salem in your life.

  6. Happy to see you’re in a better place now. Love the version of this song, btw

  7. Oh my, you’ve had quite an “adventure.” I am glad to see that you are feeling better. The lesson I learned from all of this is that we need to listen to our own bodies. We know them best, even if the doctors tell us something else.

    I hope you continue to heal.

    Nancy

  8. Thank you from my heart for the update! Breathe easy and get well now 💕

  9. I am so glad you’re feeling better, Ann. Goodness. What a thing to go through. Now hang on. I hope Edinburgh is a few weeks away yet. Keep healing.

  10. You never fail to amaze me with the amount of heart in which you face the world every day, my dear friend Ann Koplow.

    And can we all get some of that dog-tested medicine from the New York Times story? The timing is right for all of us.

    You go on with your plans. We’ve got your back.

  11. I fail to see how I can possibly believe your heart will ever fail.

  12. Heart failure doesn’t sound good, my uncle died of heart failure, the heart fails one can die so not good that said I am glad you are doing better and went to hospital when it was needed.

  13. Ann, you saved your own life. I am extremely grateful for your persistence and self-knowledge. I would hate for your voice to be silenced for any reason, but most of all, for oversight.

  14. How long will you have to be on the low salt diet?

  15. My eyes are on that pink Zinnia (elegans)!

  16. Heartfelt wishes for health

  17. You gotta be kidding! Where is the MacBook Air?

  18. Maria

    Yikes! Glad to hear it resolved, terribly scary…

  19. Oh lord, you have everybody on the edges of their seats these days. I’m glad you are such an in-tune patient that you do what you need to do. Well done!

    For what it’s worth, I’ve always hated the phrase “heart failure” — my mother suffered from it when I was a kid and I couldn’t understand why it was called “heart” when clearly she was having trouble with her lungs.

  20. My heart cannot help but be with you on your scary journey. I don’t know how you cope with scares like this all the time. I know we just learn to deal with things day by day, but that doesn’t mean we have to like it. Its like my fear of cancer coming back..cant do a thing but keep an eye out. But we’re here together!!

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