As I approach my 1300th consecutive daily post here at WordPress, I am thinking that important topics, for me, include “How to Not Die” both as
a blogger and
a human being.
How to Not Die as a blogger could very well include changing the title of this blog from “The Year(s) of Living Non-Judgmentally” to “How to Not Die.” Don’t you think that new title would
attract more readers and
be a better representation of my life-long story of figuring out how to not die from heart-related challenges?
Unfortunately, this picture, taken yesterday, proves that my using “How to Not Die” would be a deliberate act of plagiarizing a beloved celebrity and author:
I guess you and I are stuck with the title of this blog, as I look ahead to the next 1300 consecutive daily posts.
How to Not Die, for me, includes getting up and out and taking photos of what’s alive around me, including these:
What music might you choose for a post titled “How to Not Die?”
If you believed that history had its eyes on you, how would that affect your actions?
While we are living, there is no way for us to know whether history has its eyes on us. I prefer to live as if history might have its eyes on me. In other words, I try to live according to my deepest values and beliefs.
If history does turn out to have its eyes on me, do you think any of the photos from today’s blog post might make it into a history book?
No matter what your eyes see in this blog post, I hope my eyes see a comment from you.
Many thanks to Hamilton, Bertucci’s (for the chocolate cake), my son Aaron (who is not really President of the United States), the Arlington Center for the Arts, Rancatore’s Ice Cream, and all eyes that are on me now, including yours!
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:
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?
When I was a little kid, I spent a lot of time in hospitals, because of my unusual heart. Because hospitals didn’t have the heart they have now, they did not allow my parents to spend the night with me. As a result, I was frightened and alone, during a time I especially needed to feel connected and protected.
As I’ve grown, I’ve known, intellectually, that I am not alone. But the feelings from childhood persist.
As I’m typing this post now, alone, I’m realizing that I am probably less alone, here and now, than I’ve ever been in my life because of friends, family, doctors, and connections through WordPress.
And yet, it’s so easy for all those people to vanish from my consciousness, leaving behind that old childhood “knowledge” of being alone.
Whenever I experience a hospital stay — as I did last week — those feelings of aloneness get retriggered. Like many other people, when I feel vulnerable, sick, and in unfamiliar surroundings, I can be much more aware of my aloneness than of my connectedness with others. There is something about being alone in a hospital room, listening to the sounds of machines that measure your breathing and pulse, that can bring on a stark sense of isolation.
And yet, even in the hospital, there are always moments when I KNOW I am not alone. Those moments of connectedness include my time on WordPress, every day.
Thanks to my readers, for always reminding me that I am NOT alone.
Yesterday, I felt well enough to go for a walk alone.
When I took every picture yesterday, I felt connected, even when I was alone.
Is there one picture, alone, that stands out for you, as THE image for today’s post?
I’m more than just heart and lungs, I considered saying to some people during this hospital stay. However, it was difficult for me to say that, because
I’m pretty polite and
I was sometimes hooked up to oxygen masks where I could not speak, at all.
Beginning with my many childhood hospital experiences, I’ve noticed that patients can elicit a kind of non-seeing response in others. For some people, it’s like we’re invisible.
I see many reasons for that non-seeing response:
People are afraid of illness.
People are afraid of mortality.
People are very focused on seeing themselves.
It’s important to me that you see that I’m not claiming that everybody who sees me in the hospital doesn’t really see me. Every time I’m a patient, I am also seen by many truly caring professionals.
Speaking of truly caring professionals, Dr. Mark Estes — my cardiologist who’s been seen on this blog before (including here and here) — was surprised to see that I was in the hospital yesterday. I loved seeing him walk into my hospital room yesterday morning, trailed by medical students.
Here’s how Dr. Estes saw me yesterday, in his own words:
“The most famous and important patient in this hospital.”
I was sitting in a hospital bed with pneumonia AND heart failure at the time, so I HAVE to believe I’ve looked better.
After Dr. Estes saw me for a helpful discussion of the details of my latest hospital stay, he turned to his medical students and asked them, “What’s the lesson to be learned here?” And here’s how he answered his own question:
Always listen to the patient.
Can you see why I love being seen by Dr. Mark Estes?
Here are some things I saw through my iPhone yesterday:
Rather than have “inexplicable” be inexplicable, here’s a definition:
in·ex·pli·ca·ble
ˌinekˈsplikəb(ə)l/
adjective
unable to be explained or accounted for.
“for some inexplicable reason her mind went completely blank”
synonyms: unaccountable, unexplainable, incomprehensible, unfathomable, impenetrable, insoluble
For some inexplicable reason, my mind never seems to go completely blank.
Yesterday morning, I inexplicably said to a team of doctors that came to my hospital room:
People seem to find my getting pneumonia inexplicable. What should I say to somebody who asks, “How did you pick this up?”
The head resident inexplicably smiled, paused, and then responded.
Tell them, “I got it from you.”
That response is inexplicable, unless you realize that he was kidding.
Yesterday, I inexplicably had an almost completely positive day at Boston’s Tufts Medical Center, where I’ve been hospitalized since Sunday, as follows:
they got me off I.V. antibiotics and onto oral ones,
I stopped wearing any sort of oxygen support,
I did many laps around the hospital unit, and
several of the doctors mentioned the possibility that I might be going home today.
My happiness at the end of the day is probably not inexplicable.
Then, one of the nurses woke me up in the middle of the night to tell me that my oxygen levels had inexplicably gone down while I was sleeping. No matter what position I got into, the oxygen levels remained inexplicably insufficient. As I am writing this inexplicable post, I am back on oxygen support.
Will this inexplicable drop in my oxygen levels affect my chances of going home today?
Your inexplicable guess is as good as mine.
Are any of my photos from yesterday inexplicable?
If any of those images are inexplicable, let me know and I shall explain.
Are my two musical choices for this post (found here and here on YouTube) inexplicable?
Honestly, if there are no comments on this post, I shall find that inexplicable.
Explicable thanks to all who helped me create this inexplicable post and to you — of course! — for reading it.
Since I was taken to a hospital room three days ago and attached to I.V. antibiotics and oxygen, it makes sense that I might ask somebody to
Take me to the world!
My laptop computer, which I took with me to the Emergency Room on Sunday, takes me to the world. This is the song that was playing right before I started creating this post, which took me to the world.
Here are lyrics from Stephen Sondheim’s “Take Me to the World” that I’d like to take to the world:
Let me see the world with clouds
Take me to the world
Out where I can push through crowds
Take me to the world
A world that smiles
With streets instead of aisles
Where I can walk for miles with you
Take me to the world that’s real
Show me how it’s done
Teach me how to laugh, to feel
Move me to the sun
Just hold my hand whenever we arrive
Take me to the world where I can be alive
Let me see the world that smiles
Take me to the world
Somewhere I can walk for miles
Take me to the world
With all around things growing in the ground
Where birds that make a sound are birds
Let me see the world that’s real
Teach me how to laugh, to feel
We could laugh together
Move me to the sun
Just hold my hand whenever we arrive
Take me to the world where I can be alive
Do you want the world?
Why then, you shall have the world
Ask me for the world again
You shall have the world
A world of skies
That’s bursting with surprise
To open up your eyes for joy
We shall see the world come true
We shall have the world
I won’t be afraid with you
We shall have the world
You’ll hold my hand and know you’re not alone
You shall have the world to keep
Such a lovely world you’ll weep
We shall have the world forever for our own
Here are photos from my hospital room that I want to take to the world, here and now:
Any comments you’d like to take to the world?
Thanks to Stephen Sondheim, Evening Primrose, Theresa McCarthey and Neil Patrick Harris, the caring staff at Tufts Medical Center, my friend Megan for the flowers, and you — of course! — for taking me to the world with your presence, today.
At various points during the day yesterday, people coming into my hospital room — where I’m being treated for pneumonia and some associated heart failure — have had to wear masks, for their protection and mine.
Because I’ve been wearing various types of oxygen masks and because my face has sometimes been a mask of exhaustion, illness, worry, nausea, and anxiety, I haven’t taken a lot of photos of those masks.
Here’s the one photo I took yesterday.
Who is that masked man?
That is my long-time and trusted cardiologist, Dr. Deeb Salem. To me, the mask cannot hide his wonderfulness. Both times he showed up in my room yesterday, he dispelled my masks of worry and fear.
What music am I about to unmask for this post about masks?
I cannot mask my delight and appreciation for your visit to my blog, here and now.
