Posts Tagged With: living with a very unusual heart

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:


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:










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: , , , , , | 44 Comments

Day 752: Too much?

Here’s a question I heard in a therapy group at work, yesterday morning:


This question was asked and answered, in many different ways, by people feeling

  • vulnerable,
  • self-critical, and
  • overwhelmed.

Was that


For me,  it was neither too much nor too little. I was honored to witness all of them, as they spoke, wrote, and shared about “too much.”

Often, in group therapy and elsewhere, people wonder: “Am I


They ask, in many different ways: “Are my feelings, thoughts, needs, wants, demands, desires, responsibilities, tears, fears, hopes, burdens, reactions, laughter, anger, worries,  disappointments, expectations


What do you think?

Yesterday, after work, I met with my primary cardiologist, Dr. Deeb Salem, for two hours, for the second time in two months.

Was that


Did we talk


Whenever I talk to Dr. Salem, it seems like the right amount.

Did we decide


Not really. In the course of that long conversation, Dr. Salem and I discussed many scenarios and possibilities, including

  • the possibility of my having heart surgery soon after I return from California, in less than two months,
  • the distinct possibility that will help me feel better and live longer,
  • the distinct possibility of that heart surgery — valve replacement — making my heart worse,
  • the distinct possibility that if we do nothing for too long, my heart will deteriorate to the point where that surgery will not fix things, and I will need to wait for a heart transplant,
  • doing and deciding nothing until we get the results of the kashmillion* tests I’ll be undergoing in the next couple of weeks, and
  • Dr. Salem starting a blog about me.

I don’t think Dr. Salem was serious about that last possibility. When he said, “I’m going to start a blog about YOU,” as he left the exam room yesterday, to page one of the kashmillion* cardiologists I’ve been seeing lately, that sounded more like a threat than a promise.

Isn’t Dr. Salem


And I mean that with just the right amount of affection and respect.

In all that I dealt with yesterday, was there anything that seemed


One thing that seemed too much to comprehend and bear: When I arrived for my appointment with Dr. Salem yesterday, he was on the phone making plans to attend and participate in the memorial service for Dr. Michael J. Davidson.



I found those images here, left in loving memory of the cardiac surgeon who was shot and killed at a nearby Boston hospital, two days ago.

For you, is there anything in this post that is


I hope you know that any thoughts, feelings, or questions you express in a comment will NOT be too much, for me.

As I try to comprehend all that is happening around me, what helps me are

  • music,
  • community, and
  • humor.

So, when I woke up this morning, I thought about an old skit from Saturday Night Live. Let’s see if I can find it, anywhere …

I guess that was too much for me to expect, that I could show you the “Nuclear Plant Retiree” skit with Ed Asner, from Season 10 of Saturday Night Live.

If I try to describe that skit to you, would that be


In that SNL skit,  a nuclear power plant expert, played by Ed Asner, is retiring. At his goodbye party,  he says to his co-workers:

No matter what happens, you just need to remember one thing: You can never put too much water in the nuclear core.

Everybody nods and bids him farewell.

Some time after he’s gone, something goes horribly wrong at the reactor. As people are panicking, some people are convinced he meant “Don’t put any water in there!” and others think he meant, “Put as much water in as you can!”

The last shot in that skit: Ed Asner sitting on a tropical beach with a nuclear cloud in the background.

Isn’t language — and all the possibilities of human beings misunderstanding each other —


What music would be — not too much, not too little — just enough for this post?

As it is, this is the music I was listening to yesterday, as I was dealing with all there was:

If there’s too little of Pat Metheny playing “As It Is” in this post for you, you can find it here, on YouTube.

Would some other photos I took yesterday be


IMG_4804 IMG_4805 IMG_4806 IMG_4807 IMG_4808 IMG_4809 IMG_4810 IMG_4811 IMG_4812 IMG_4813 IMG_4815

My boyfriend Michael thinks it’s too much when people leave up Christmas lights this late in January. Since I enjoy color and light when it’s cold and dark, I think it’s just right.

Too much thanks to Dr. Salem, to the late Dr. Michael  Davidson, to my bf Michael, to Saturday Night Live, to Pat Metheny,  and to everybody everywhere who has ever helped me and others deal with too much and too little (including you).

* Kashmillion is too much.

Categories: inspiration, personal growth | Tags: , , , , , , , | 39 Comments

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