Posts Tagged With: Congenitally Corrected Transposition of the Great Vessels

Day 832: Why I felt better yesterday

I felt better yesterday because — for the first time in 5 months — the weather in Boston was temperate AND sunny.

      

    

            

I felt better yesterday because I got to spend some quality time with my 17-year-old son, Aaron, who is leaving this Wednesday for a 10-day school trip to Italy. Here are some shots I took during that quality time:

          

I felt better yesterday because I watched on YouTube, again, a video that Aaron and his friend Cameron made, several months ago, which included an original song and a surprise appearance by my boyfriend Michael, with lasagna. I felt better watching that video because I always love witnessing how cool and creative my son is.

I may not be cool and creative enough to include that video in this here post  (so that you might feel better too), but I shall do my best.

I felt better yesterday because I was able to post on Facebook that my high school class of 1970 had a time and place for its 45th reunion, next September.

I felt better yesterday because, despite several cardiologists believing that my very unusual and difficult-to-figure-out heart is on an irreversible and perhaps rapidly increasing path towards deterioration, eventually necessitating heart valve replacement and/or a heart transplant …

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… I felt more than better, yesterday. I felt GREAT.

Indeed, if you had seen me taking any of those pictures above, you might have felt better too, because — as a 62-year-old survivor with the extraordinarily rare condition of congenitally corrected transpositon of the great arteries (cctga) and  “on the cutting edge” (which is not referring to my surgery next month) of longevity — I was

  • smiling,
  • singing,
  • dancing, and/or
  • skipping, for heaven’s sake.

I feel better now, just thinking about that.

What helps you feel better?

Here’s some music I heard yesterday which helped me feel even better, from Stephen Sondheim’s rarely produced and early musical, The Frogs:

I hope to feel better today, too, especially if I can figure out how to include Cameron and Aaron’s video in this Feel Better Post.

Whether or not I’m good enough to include that video here, I feel I’ve bettered this post enough to publish it, already.

Okay!  I can now include the video of Cameron and Aaron’s song, thanks to help from Aaron (which always helps me feel better):

Feel-good thanks to Aaron, Cameron, Michael, my high school classmates, Stephen Sondheim, John Stamos, smiling creatures everywhere, the beautiful Boston weather, my caring and competent cardiologists, my very unusual heart,  and everybody and everything that contributed to my feeling better yesterday. And special thanks to you — of course! — for visiting and helping me feel better, today.

Categories: inspiration, personal growth, photojournalism | Tags: , , , , | 78 Comments

Day 815: The more you know, the better you feel. 

Here are some photos I took yesterday in the office of my Primary Care Physician, Dr. Laura Snydman:



Do you agree with that? The more you know, the better you feel?

My answer to that?

Here’s more for you to know.  “Whatever” would NOT be my answer. That’s just a cup I saw yesterday evening. My answer would be:

Whether I feel better would depend on the knowledge. 

I DID feel better after I met with Dr. Snydman yesterday and I DID know more, including this:

At least one doctor in my crowd of cardiologists is recommending the  treatment plan I prefer (and which I recommended — in an email, months ago — to another cardiologist).

Knowing that helped me feel much better, because:

  1. That plan — replacing my pacemaker with a pacemaker/defibrillator combo to reduce my risk of sudden cardiac death and to try to restore my heart’s ability to speed up in response to exertion and exercise  — is a much less invasive plan than valve replacement surgery (which I know other knowledgeable cardiologists have been recommending) and
  2. I love feeling smart.*

What more would you like to know now, to feel better?

Here are some other photos I took yesterday, for more knowledge and/or better feelings:

    

That last image  reminds me of some more better-feeling knowledge: There’s an “ice cream social” today at work.

Do you know any feel-better songs that would fit today’s blog post?

I choose  “Beat 70” by the Pat Metheny Group:

… because I’m hoping my heart will keep beating until I’m 70 (and more).

You might know this: the more you comment, the better I feel.

Many thanks to Dr. Snydman, to the Pat Metheny Group, to medical teams everywhere, to people I know who felt better or who helped me feel better yesterday, to crowds of cardiologists and pacemakers, to ice cream, and — of course! — to you, no matter what you know or how you’re feeling today.


* I was going to write “I love feeling like a know-it-all” instead, but know-it-all’s don’t usually help me feel better.

Categories: personal growth, photojournalism | Tags: , , , , , , , | 49 Comments

Day 616: Nostalgia

What does the word “nostalgia” mean to you?

Here’s what it means to various dictionaries (according to thefreedictionary.com):

1. A bittersweet longing for things, persons, or situations of the past.
2. The condition of being homesick; homesickness.

 

1. a yearning for the return of past circumstances, events, etc
2. the evocation of this emotion, as in a book, film, etc
3. longing for home or family; homesickness

 

1. a wistful or sentimental longing for places, things, acquaintances, or conditions belonging to the past.
2. a longing for home; homesickness.
3. something that elicits nostalgia.

 

Why am I writing about nostalgia today? Lots of reasons, including these:

  1. I am having a college reunion this month.
  2. My late father’s birthday is tomorrow.
  3. Fall reminds me of going back to school, and I’m not in school any more.
  4. Yesterday, I was talking to my son about somebody who went to school with me from 7th grade through my college years, who died two years ago.
  5. Yesterday, I started going through some old papers, which I recently  retrieved from their storage in a place I lived two homes ago. I found many letters, including some from people I’m still in contact with (in person, through Facebook, or through this blog).
  6. I found a kind and thoughtful letter from the person I was talking to my son about earlier in the day, even though I didn’t remember our communicating by mail.
  7. Last night, I dreamt about somebody else whose letter I read, when going through those old papers, whom I haven’t connected with in many years.

I found a lot of surprising and not-so-surprising things, when I went through old papers — which have not seen the light of day for about twenty-five years — including:

  • A copy of the abstract my cardiologists wrote about me, when I first started working with them in the early 80’s (which Dr. Mark Estes referred to in a previous blog post, here, when he said about me to a roomful of people, “My first meeting with her got me into this specialty.”)

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  •  A copy of the memo my office-mate sent, in the mid -1970’s, about the going-away party sending me off to the company where I met the father of my son.

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  • A drawing I made of my son’s father, in the 1980’s, which might surprise anybody who has seen other evidence of my drawing skills, such as here:

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I have many more papers to go through. Who knows what else will show up here?

Personally, I’d like some music to show up here, now. I’m choosing two versions of a tune I heard at the Steely Dan concert I attended with my son this weekend, even though the lyrics don’t fit.

(YouTube video found here)

(YouTube video found here)

After all, I AM going back to My Old School.

Thanks to friends and family members (here and gone); to schools and other learning opportunities (old and new); to all the  cardiologists I’ve worked with in my long life; and to you — of course! — for any past, current, or future nostalgia you may experience today.

Categories: inspiration, Nostalgia, personal growth, photojournalism | Tags: , , , , | 20 Comments

Day 400: Expected Numbers

First of all, dear readers, I want to acknowledge the number of my post today.

I made it to Day #400!   Yay!!

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When I started this blogging journey, my goal was to make it to Day #365, with no expectations of ever getting into the Four Hundreds.

Which reminds me of a story, ladies and gentlemen. The timing for this story is pretty darn good, since I told this story at my 60th birthday party, almost exactly a year ago.

The story is about ….

Me and My Cardiologist

My cardiologist’s name is Dr. Deeb Salem.  He works at Tufts Medical Center.  Here’s a photo of him:

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I could tell lots of stories about Dr. Salem, since I’ve been working with him since 1980, when I was 27 years old. I’ve already written about him here, on Day 62 (credited) and Day 275 (uncredited).

I just checked to see if there’s a Wikipedia page about Dr. Salem. I found that while Dr. Salem doesn’t have his own Wikipedia page (which surprises me), he shows up on a page titled How Doctors Think, which is a book by Dr. Jerome Groopman. I don’t want to go too deep into this digression, but I will quote from that page, as follows:

Salem’s challenge

Groopman spends a great deal of the book discussing the challenge posed to him by Dr. Deeb Salem, chairman of the Department of Internal Medicine at Tufts-New England Medical Center, during a presentation the author made at their hospital grand rounds. During the presentation, Groopman was discussing the importance of compassion and communication in providing medical care when Salem posed the following question:

“There are primary care physicians in every hospital who speak with great sensitivity and concern, and their longtime patients love them, but clinically they are incompetent–how is a patient to know this?”

This is what I find ironic about THAT:  a lot of Dr. Salem’s patients love him, 3 including me.  But I understand why Dr. Salem may have asked that particular question.  He is not only lovable, he is EXTREMELY competent. Believe me, I know.

Anyway, back to the story I told at my 60th birthday party.

I will set the scene, with the cast of characters. I had invited Dr. Salem to my 60th birthday party and I planned to tell this story, at some point during the festivities.  Soon after he had arrived with his wife, I found the two of them chatting with some other Very Important People in my life. I joined the conversation and told my story, as follows:

When I was 44 years old, and about three months pregnant with my son, my then-husband was experiencing some medical problems. He wanted to spend time, on a Saturday, at the Boston University Medical Library, researching his symptoms. Since I hadn’t brought anything else to read there, I became bored, so I decided to look up the latest research about my very rare medical condition, Congenitally Corrected Transposition of the Great Vessels. 4

And what I found, that day, totally freaked me out.

I found published medical articles that said:

  1. Women with my condition should NOT get pregnant.
  2. Most people with my condition were not expected to live past their 40’s.

You can probably imagine how I felt, reading those, that day.

Very soon after that, I called Dr. Salem and told him what I had found. And I know I was having many feelings, during that phone conversation, including fear. And anger, too. I remember crying and perhaps raising my voice, a little 5 on the phone.  The gist of what I was saying was:

What am I supposed to think about all this? And why didn’t you tell me these things before?  I’m 44 years old and three months pregnant!  Arrrghhhh!!!! 6

And this is how Dr. Salem responded, on that day on the phone with me, in 1997.  He said, very calmly,

Ann, you have an incredibly rare condition.  Every article published about your condition uses a very small sample size. So the results are suspect.

And Dr. Salem told me some specifics about the articles I had read.  While these details were somewhat reassuring, I cut to the chase:

Let me ask you this, okay?  Am I going to make it to age 50?

Dr. Salem immediately said,

Yes, Ann.  I look forward to celebrating your 50th birthday with you.

I immediately shot back,

What about my 60th birthday?  Will you be celebrating that with me, too?

And because I am very observant of subtle reactions in people, I noticed that Dr. Salem paused and took a breath, before responding, more slowly this time:

Yes, Ann. I expect to be celebrating your 60th birthday with you.

And, my punchline, as I was telling this story to Dr. Salem, his wife, and other VIP’s at my 60th birthday party was …

And here we are!!!

But, as usual, Dr. Salem had an even better punchline.  He laughed and said, “I remember that conversation.  I was wondering if I was still going to be around for that.”

And Dr Salem, his wife, and other VIPS in my life celebrated, that day, that we were all very much alive.

So why am I finally7 telling you this story today, dear readers?

Because, tomorrow I’ll be seeing Dr. Deeb Salem for my annual cardiology visit. And it’s the first time I’m seeing him since I left the hospital, a few months ago, after developing atrial fibrillation and being prescribed anti-coagulant medication, probably for the rest of my life.

And, honestly, I have some fears about this appointment.  I’m going to be asking him some difficult questions. And, as always (because I’ll be getting some tests that day, too), I might be hearing some difficult answers.

However, I may very well be catastrophizing, right now:  looking into the future and imagining the worst.

I’ve got an idea!  Maybe I’ll ask him about my 70th birthday party!

Thanks to Dr. Salem (obviously) and to you (of course!!) for reading today.


1  This photo has shown up several times before, including this post and this post.  And in case anybody is wondering…. NO! I have not gotten any further in developing my brilliant product idea of Neat Confetti.

2  I found this photo here.

3  Believe me, I know.  I’ve seen it, over the years, in many circumstances, including a dinner honoring him about five years ago, which I attended (and where many patients talked about their positive experiences of him).

4  See here, for my most detailed blog post about my heart condition.

5  I raised my voice only a little because other people were around me AND I have a little trouble expressing anger (as I wrote about, yesterday). Although, come to think of it, I feel pretty safe expressing all my feelings to Dr. Salem.

6   Or words to that effect.

7   I could have sworn I already told this story, in a previous blog post. But …. NO.

(I’ve forgiven WordPress.  I was angry at it earlier for throwing in unexpected numbers for the footnotes, which I’ve now fixed. C’est la vie, right?)

I’m mad at WordPress again. Unexpectedly, it changed the date of this post from the correct one, February 4, to February 2. While it might be fun to time travel two days back to my birthday, this screws up the order of my posts. The authorities have been alerted. (And they — and other bloggers — helped me fix it, on 2/5.  Yay!)

Categories: inspiration, personal growth | Tags: , , , , , , , , , | 50 Comments

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