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.
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.
I took a break, yesterday, from negative assumptions about cardiac surgeons (based on some difficult past experiences), when I spoke on the phone to Dr. Joe Dearani from the Mayo Clinic. Dr. Dearani is going to break into my very unusual heart on September 21 to replace my severely leaky valve with a mechanical valve, so that my doctors and I can take a break from concerns about deterioration of my heart’s pumping ability. Dr. Dearani told me that he takes a break from work, sometimes, by visiting my hometown of Boston, because a lot of his relatives live in the New England area.
After I spoke with Dr. Dearani, I was able to take a break and truly relax, for the first time in quite a while.
Yesterday, I took short breaks throughout the day to take some take-a-break photos:
I also took a break from wondering why this photo, from yesterday’s blog post, has gotten absolutely no comments from any of my readers:
What music do you think would help us all take a break in this post?
Because I have not been able to take a break from my fascination with Hamilton, I’m including this link to “Take a Break,” from that break-through musical.
I just took another break to watch this on YouTube:
When I had my first heart surgery when I was 10 years old, I took a valuable break by watching “The Price is Right” in the hospital, a few days after President John F. Kennedy’s assassination. I remember taking a break, all by myself, laughing until it hurt about the weird ugliness of the car they were giving away that day. (A Jaguar, no less, but what does a 10-year-old girl know about cool cars?)
Do you think you have time to take a break today and leave a comment for this post?
I would never take a break from expressing gratitude to all those who help me create these posts and to you — of course! — for reading them.
What’s wrong with me, that I’ve been running fevers since last Thursday?
What’s wrong with me, that they admitted me to a regular room in the hospital from the Emergency Room on Monday and then had Jean move me the next morning to a weird-looking, isolated-feeling, private room all the way down the hall?
What’s wrong with me, that they gave me one infusion of intravenous antibiotics?
What’s wrong with me that I couldn’t figure out how to make that machine stop its annoyingly loud beeping for about an hour after the infusion was complete?
What’s wrong with me that I’ve been using the game “Hangman” as a way to distract myself since I was a little kid?
What’s wrong with me that I thought I could figure out how to use the thermometer in my room by myself?
What wrong with me that I converted that result to Fahrenheit, decided I was fever free, and reported that to people I know? What’s wrong with me that I’m confessing, now, that I actually was not using that thermometer correctly and that my fever has never gone down to normal since last Thursday without the help of Tylenol?
What’s wrong with me that these friggin’ fevers won’t go away?
What’s wrong with me that I, the patient, wrote stuff on the whiteboard in my hospital room?
What’s wrong with me that they sent me down for an echocardiogram, where I was lucky enough to run into the amazingly wonderful Eva, my favorite person who works there?
What’s wrong with me that I’m now including links (here and here) to my other blog posts that feature Eva?
What’s wrong with me that I took these pictures of Eva’s Apple Watch?
What’s wrong with me that I sang for Eva during the echocardiogram? What wrong with me that when I found out she also loves to sing and sings alto that I suggested we sing together some time in the future?
What’s wrong with me that I keep asking what’s wrong with me? I should know, from my experience as a clinical social worker, that this is a much more useful question:
What’s right with me?
There must be some things right with me, because they sent me home from the hospital last night, even though my fevers haven’t gone away. Here’s what is most likely NOT wrong with me: Endocarditis. I’m all right with that. My doctors will call if any tests show what’s causing these fevers.
What’s the right music for this “What’s wrong with me?” post?
Thanks to Eva, Miss Peggy Lee, all the other people who helped me make this post right, and thanks to you — of course! — for reading it.
I’ll show you how Tufts Medical Center in Boston — where I was hospitalized last night for fevers — completes that sentence:
Do you believe that the more you know, the better you feel?
Here’s more to know about my July 4th, yesterday:
The on call doctor phoned me to say he would feel better if he knew I went to the Emergency Room to get more cultures for endocarditis, since nobody knew why I was continuing to have fevers.
Because I know more about Emergency Rooms than most people, I decided I’d feel better if I went earlier rather than later.
The more some people know about the E.R., the better they feel, as evidenced by this photo I took soon after I decided to go.
I “knew” that the staff at the Emergency Room would simply take more blood cultures and release me after that, which helped me feel better, since I hate to stay at hospitals.
The more I knew, the more convinced I was that I was NOT going to see any of my beloved fireworks this year, which made me feel worse.
Once I knew that the Emergency Room doctors wanted to hospitalize me because they couldn’t figure out what was causing my fevers, the worse I felt.
I emailed my cardiologist, Dr.Deeb Salem — who is on vacation and away from the hospital until next week — about the developing situation in the Emergency Room, assuming that the more he knew, the better he would feel.
The more I knew about the doctors’ thoughts and feelings regarding my being hospitalized, the better I felt about reluctantly acquiescing.
The more people know about my cardiologist Dr. Deeb Salem — who sent me the two-word email “Safe plan” — the better they feel.
The more I knew about my nurses after I got settled in my hospital room, the better I felt.
The more I knew about a FABULOUS vantage point in the hospital for watching the famous Boston fireworks at 10:30, the better I felt.
Now that we know more, how do we feel?
The more I know to express my heart-felt gratitude to my readers, the better I feel.
