heart condition

Day 2417: Roadmap for a respectful culture

Hello, my respectful readers!

Yesterday, I noticed this big roadmap on the office wall of our Senior Director of Social Work and Patient/Family Engagement at the hospital:

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Respectfully, I realize that parts of that important roadmap are difficult to read.  I hope this helps:

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In case it doesn’t, I respectfully submit this list of behaviors promoting a respectful culture:

  • Intentionally engaging and including all constituents by participation and information sharing
  • Spending time with people
  • Introducing new employees via walkabouts through the department
  • Saying thank you
  • Asking questions
  • Listening more, talking less
  • Paraphrasing to check understanding
  • Coming up with at least 3 possible rationales for an action
  • Making eye contact
  • Saying “hi” to everyone
  • Helping those who are lost
  • Smiling
  • Show gratitude frequently
  • Asking for and accepting help when needed
  • Asking for feedback across, down, up

Yesterday, I met our neighbor Will Isenberg,  who is offering a roadmap for a respectful culture …

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I’m voting for Will on September 10 because I believe his roadmap will lead to a more respectful culture.

Today, I will be respectfully appearing on the podcast Heart to Heart with Anna, in which Anna Jaworski and I will be intentionally engaging and including all listeners by participation and information sharing about my very unusual heart. I don’t yet have a specific roadmap to my episode, but I’ll insert that link later today.

Here’s the link to the podcast. The first airing will be noon USA Eastern time.

And this link lets you listen at your convenience.

I respectfully submit all my other photos from yesterday, wondering which offer a roadmap for a respectful culture:

What music comes to mind when you think of a roadmap to a respectful culture?

This is what comes up on YouTube:

This shows up, too:

Now I’m asking for feedback across, down, up, with a respectful roadmap to the comments section, below.

Since gratitude is such an important part of a roadmap to a respectful culture, thanks to all who helped me create this blog post and — of course! — to YOU.

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Categories: health care, heart condition, personal growth, photojournalism | Tags: , , , , , , , , | 22 Comments

Day 2327: Why? Why?

Why oh why am I writing a fourth blog post about Why?  Why am I linking to the previous three posts (here, here, and here)?

Why did I write “Why?” on two different white boards at work yesterday?

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Why do white boards consistently get more difficult to erase?

Why were people in therapy yesterday asking so many WHY? questions, including:

Why is there so much traffic?

Why did it take me four times as long as usual to get here today?

Why do people back their cars into spaces in parking lots?

Why do people do what they do?

Why do I deliberately act like a mischievous child?

Why am I in so much pain?

Why am I in therapy?

Why aren’t other people in therapy?

Why did I take the rest of these pictures?

 

Why is it taking so much longer for me to access and transfer my photos? Why does that happen periodically?  Why does it bother me less each time it happens?

Why am I still having trouble writing that letter from the President for my professional organization’s newsletter?  Why did I start fresh yesterday with a new topic?  Why did Michael say he thought my first, abandoned topic  (the rejuvenation of Spring) was better? Why am I going to finish the second topic and then write another letter with the first topic if I have time? Why am I using the quote “If you want something to get done, give it to the busiest person” in my letter?

Why did I ask all the questions I did in this podcast (starting at 19 minutes and again at 28:34)?

 

Why did Michael not want to listen to that podcast last night? Probably for the same reason he doesn’t usually read this blog.   Why did I think I could find the post that explains that by searching on “Why Michael doesn’t read this blog”?

Why would you leave a comment today?

Why would I thank all those who help me write these posts and also YOU?  Why do you think?

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Categories: health care, heart condition, personal growth, photojournalism, Psychotherapy | Tags: , , , , , , , , , | 18 Comments

Day 2059: HEART TO HEART

Where does your HEART go, dear HEART, when you HEAR The words “HEART TO HEART”?

My HEART goes to important conversations with those I love, including these two Scottish women with whom I share a very unusual HEART condition.

Whenever I’m in Edinburgh, I have a HEART TO HEART TO HEART with Vicki and Andrena. We all have congenitally corrected transposition of the great arteries (cctga), the rarest of congenital HEART conditions and we have a lot to say to each other. The odds of the three of us being in the same place at the same time are so astronomical, I don’t have the HEART to calculate it.

Do you see any other HEART TO HEART’s in my other HEARTfelt photos from yesterday?

I look forward to HEART TO HEART’s in the comment section, below.

Thanks — from my HEART — to my HEART sisters Vicki and Andrena, Vicki’s wonderful rescue dog Belle, Loudons Cafe, the Edinburgh Festival Fringe, those who celebrate difference, all who battle suicide, Gillian Skye (the excellent writer and actor of Come Die With Us, which touched my HEART), Tony Slattery, all those who forgive and learn from mistakes, and — of course! — YOU, my dear heart of a reader.

Categories: heart condition, personal growth, photojournalism | Tags: , , , , , , , | 24 Comments

Day 1732: Got a second?

Got a second? I’d like to tell you about yesterday’s appointment with my cardiologist, Dr. Salem (who is second to none).  While I was waiting several seconds in the exam room for Dr. Salem, I took a second to snap this:


Got a second to hear about my conversation with Dr. Salem?  Dr. Salem said he couldn’t be more pleased about how my heart is beating every second, as I begin my second year after my heart valve replacement surgery last September.   I seconded that opinion.

Got a second to look at some more split-second photos?

Got a second to listen to “A Good Thing Going” from Merrily We Roll Along, which I’ll be seeing for a second time this weekend?

If you’ve got a second, keep a good thing going by leaving a comment below.

I’ve always got a second to thank all who help me create these posts. Second, I want to thank YOU for being so supportive, every second.

Categories: heart condition, personal growth, photojournalism | Tags: , , , , , , , , , | 15 Comments

Day 1476: I haven’t been the same since …

When people get into therapy, they often say, “I haven’t been the same since …” and they name some life-changing event.

Personally, I haven’t been the same since …

  • my first heart surgery at age 10,
  • I got my first cat,
  • I got my first car,
  • I rode a bicycle for the first time,
  • my heart valve replacement surgery last September,
  • my son was born,
  • my son went away to school in Scotland,
  • my son returned home for Christmas,
  • my son went back to school yesterday,
  • I took my first disco dance lesson,
  • I met my husband,
  • my divorce,
  • my cardiac pacemaker was recalled in 1975,
  • my cardiac pacemaker/defibrillator was recalled two weeks after my valve replacement surgery in September,
  • President John F. Kennedy was killed,
  • Bobby Kennedy was killed,
  • Martin Luther King was killed,
  • John Lennon was killed,
  • I went away to college,
  • I was attacked by a rapist outside my apartment in Cambridge, Massachusetts,
  • I first got into therapy,
  • I went to film school,
  • I became a therapist,
  • Barack Obama was elected President of the United States,
  • Donald Trump was elected President of the United States,
  • I met my boyfriend Michael,
  • I first saw Gene Kelly dance,
  • I heard my first pun,
  • I made my first pun,
  • I attended Berklee School of Music for a summer program when I was in high school,
  • I worked on the recruitment tape for Berklee College of Music in the 1990s,
  • I did stand-up comedy at an Open Mic,
  • my son performed stand-up comedy at an Open Mic,
  • I had my first cup of cocoa with marshmallows,
  • my father died,
  • my mother-in-law died,
  • my mother died,
  • my father-in-law died on Friday,
  • I encountered Mexican food for the first time,
  • I had my first black raspberry ice cream cone,
  • I saw my first palm tree,
  • I started blogging,
  • I got my first comment on this blog,
  • I bought my first personal computer during the 1980s,
  • I wrote computer manuals in the 1970s,
  • I slept out under the stars in Monument Valley,
  • I went cross country by bus,
  • I attended the Edinburgh Festival Fringe,
  • I heard Pat Metheny play guitar,
  • I sang in front of people,
  • I met every person who is important to me,
  • I saw my first Stephen Sondheim musical,
  • I first heard the band Steely Dan over the sound system at a Cambridge store, playing this song

  • and countless other events.

I haven’t been the same since all those things happened and yet I’m still the same person.

I haven’t been the same since I took all these photos:

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Give the happiness of a comment and I will end up happy.

I haven’t been the same since I first learned to express gratitude, so many thanks to all who helped me create today’s post and to you — of course! — for being changed and yet the same, every moment.

 

Categories: heart condition, personal growth, therapy | Tags: , , , , , , , , , | 49 Comments

Day 1391: Who Lives, Who Dies, Who Tells Your Story

To start telling this story, today’s post title is a quote from the musical Hamilton.

 

Who lives, on the day I’m writing this?

  • I do, against all odds and even though a team of doctors at the Mayo Clinic  essentially killed me* on September 21 in order to repair my heart before they brought me back to life.
  • Mel Brooks, thank goodness, even though he is 90 years old (and whom I’ll be seeing today in person in Boston).
  • Approximately 7.5 billion people, according to this link.

 

Who dies, on the day I’m writing this?

  • Kevin Meaney, suddenly at age 60, who was one of my and my son’s favorite comedians.
  • 151,600 people, according to this link.

 

Who tells your story?

I’ll tell you who tells my story —   it’s me, through this blog.  Perhaps because my story has included so many doctors and medical institutions from the moment I was born, it’s VERY important to me to be the expert of my own experience — the primary teller of my own story. Of course, I can’t control how others will tell my story after I die, but to quote Kevin Meaney about that, “I don’t care.”

Here’s how I photographically choose to tell my story of October 21, 2016, when I went to  one hospital for cardiac rehab and then to another hospital to get blood work to prepare for ANOTHER surgical procedure on November 2 and also to drop in on my  amazing cardiologist Dr. Deeb Salem:

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And because we do need help from others to tell our stories, I want to thank my friend Carol, who is such a wonderful woman, for capturing the story of those last four photos.

Here’s the last photo that I took yesterday, to tell my story:

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Now, how would you tell a story in a comment, below?

I’ll end today’s story with live gratitude to all those living and dead who helped me create this post and to you — of course! — no matter how you tell your story.


* I’m glad you lived to read  this part of my story from the Mayo Clinic surgeon’s report on  September 21:  “The aorta was occluded, and 800 cc of cold blood cardioplegia was infused into the aortic root obtaining satisfactory asystolic arrest.” Doesn’t that sound like they satisfactorily killed me?

Categories: heart condition, personal growth, photojournalism | Tags: , , , , , , , , | 21 Comments

Day 1373: Dreams

Yesterday, my  12th day after open heart surgery,  I fell asleep and had a dream of  being lifted suddenly by unseen hands and carried, very rapidly, as I lay flat on my back, through many rooms and hallways. In the dream, I thought, “Oh no!  Ghosts are taking me away!” I screamed in the dream, the dream faded, and I woke up in my  bed at home.

Somewhat of an expert on dreams (because I’m a psychotherapist), I asked myself, “What did that dream mean?” And I realized the dream captured the dreamlike experience  of being wheeled down hospital hallways into  operating rooms, which has happened to me more times than you could possibly dream between the ages of 10 and 63.

Then, I got ready for my dream of a friend, Carol, to pick me up and carry me to my appointment at the Coumadin/Warfarin clinic at Tufts Medical Center in Boston, to find out if I would be able to eat all the foods of my dreams on this new medication.  The nurse there, Kathleen, was a dream, as she allayed my fears and told me I would probably be able to eat whatever I wanted (including chocolate!), as long as I did so consistently.

Then, I told Carol I wanted to drop in on members of my Cardiology Dream Team at Tufts Medical Center, who hadn’t yet seen me since my surgery at the Mayo Clinic in Minnesota on September 21. I assumed my appearance would exceed their wildest dreams. And while most patients wouldn’t dream of dropping in unexpectedly on their doctors, my cardiologist Dr. Mark Estes has demonstrated (see my previous dreamy blog post here), that he is fine with my doing that.

The next hour was like a dream.  Dr. Mark Estes showed up trailed by five students and told me I looked like a dream — better than he had ever seen me in our decades of working together.  I told Dr. Estes that I might have been dreaming, but I thought I had heard various people at the Mayo Clinic in Minnesota state that my heart was in a normal/sinus rhythm after the operation, instead of its usual atrial fibrillation.

Let me explain why my heart going out of atrial fibrillation and into normal/sinus rhythm, even for a limited amount of time, would be a very unlikely dream come true.

  1. My heart went out of normal rhythm and into atrial fibrillation almost exactly three years ago today (described in this here dreamy blog post).
  2. At that time, my doctors agreed it did not make sense for them to try any non-surgical means to return my heart to a normal rhythm, because the atria were so stretched out from my leaky valve that my heart would almost definitely return to a-fib.
  3. When I had my last cardiac procedure in May of 2015, Dr.  Estes told me that my fibrillating atria were even bigger — “the size of a grapefruit, instead of the normal size of a walnut.”
  4.  My other cardiologist, Dr. Deeb Salem,  had a dream: he hoped that the surgeon at the Mayo Clinic, when performing the open heart surgery twelve days ago to replace my leaky valve, might also use a surgical technique (called the Maze technique) to try to get my heart back into a normal rhythm.
  5. When I discussed that possibility with the Mayo doctors, they all agreed that the added surgical time of two hours was NOT worth the risk, since the chances of any technique returning me to normal rhythm was highly unlikely.
  6. At that point, I let go of the dream of my heart getting out of atrial fibrillation, and instead focused on preparing myself for the heart valve replacement surgery.

So when I told Dr. Estes yesterday that I thought I had heard people at the Mayo Clinic say that I  was out of a-fib after my surgery, he looked like he thought I was dreaming. He said, “Ann, if your heart DID get back  into sinus rhythm post surgery, that would have lasted for a very short time. I am skeptical it happened at all.”

And then everybody  — Dr. Estes, the students, Carol, me, and others — watched yesterday, as if in a dream, as we accessed the data stored in my pacemaker/defibrillator to see what kind of rhythms my dreamy heart had been generating recently, when I’ve been awake and dreaming.

As if in a dream, my dream team cardiologist, Dr. Mark Estes, announced to all of us: “You’re in sinus rhythm.  And you’ve been out of a fib and in normal rhythm consistently since your surgery on September 21.”

I responded, “My boyfriend Michael would call this a Christmas miracle.”  I heard Carol say, dreamily and sweetly, “Today is the Jewish New Year.”  Everybody looked happy, like in a dream or in a special on the Hallmark Movie Channel where the heroine does better than anybody dreamed possible.

How did this better-than-anybody-could-possibly-have-dreamed result occur?  I have a dreamy memory of a discussion, last week, with a Mayo Clinic EKG technician, who told me I was in normal/sinus rhythm when he visited me in the Intensive Care Unit.  Perhaps, we speculated, when they stopped my heart and then restarted it after the open heart surgery, that helped my heart’s rhythm — just how we often fix our phones, computers, and other devices  by turning them off and turning them back on again. Sometimes, the simplest solution works better than our wildest dreams.

After this dream of a visit with Dr. Estes, Carol carried me away in her car and drove me home to my dreamy boyfriend Michael. I told him the good news, as if in a dream. Later, when I shared the good news with my dreamy 18-year-old son, Aaron — far far away in the dreamy land of Scotland — Aaron texted me: “It sounds like a magical fairy wonderland situation over there.”

Magical and MUCH better than the scary dream that started out my dream of a day, yesterday.

I also want to say, at this point in this dreamy post, that it’s very possible that my dream of a heart with its shiny new valve might go back into atrial fibrillation — tomorrow, next week, or some other point in the future.  However, I wouldn’t dream of lowering my heart’s expectations right now — that heart of mine has exceeded everybody’s dreams for sooooooo long.

When I was dreaming under general anesthesia last week at the Mayo Clinic, my surgeon played dreamy music by our favorite saxophonist, the late Michael Brecker. On this dreamy day, 13 days later, here is one of my favorite tunes by Dreams, the 1970s dream team of Michael Brecker, his brother and trumpet-player Randy Brecker, the dreamily fabulous drummer Billy Cobham, dreamy bassist Will Lee, and other dreamily amazing jazz musicians.

 

 

Because my readers appreciate photos I take beyond my wildest dreams, here are all the dreamy images I captured yesterday:

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You know what?  Yesterday still feels like a dream to me ….  too good to be true. And I don’t have any photos showing Dr. Estes, the medical students, Carol, Kathleen the nurse, or any of other people I dreamily wrote about in this post.

So …. maybe it was all a dream?

What do you think, my dreamy readers?

Dreamy thanks to all those who helped me create this dream of a post and to you  — of course! — for whatever dreams you bring, here and now.

Categories: adult congenital heart, celebrating, heart condition, heart surgery, personal growth | Tags: , , , , , , , , | 57 Comments

Day 1370: I’ve never seen you like this before

Now that my  heart valve-replacement surgery is behind me, people are saying, “I’ve never seen you like this before” for different reasons, including these:

  1. I have new scars,
  2. I am even more in love with my wonderful and care-taking boyfriend Michael,
  3. I’ve got a cool new heart robe I’m wearing,
  4. I’m dealing with new levels of pain,
  5. I’m crying at strange times,
  6. I’m less patient with people than usual,
  7. I’m taking new medications including Coumadin/Warfarin, and
  8. Something major like open heart surgery tends to change people, doesn’t it?

Yesterday, my long-time friend Eleanor — who has seen me in many ways over the years — said, “I’ve never seen you like this before” when I got  angry and upset with an abrupt hospital administrator whom I needed to get past in order to my blood tested for another INR level. I’ve decided I never want to see the administrator like that, again, so I probably won’t go back to that same location for future blood tests.

After I got my blood drawn by people I had never seen before, Eleanor and I went to see people I really like to see and who have been seen before on this blog (like here): the wonderful staff at Mount Auburn Hospital Cardiac Rehab.

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That’s Kathy,  Danise, and Carla.  In a week or two, they’ll be seeing me like they’ve never seen me before, recovering slowly from  open heart surgery.

Here are some more photos you’ve never seen like this before:

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I’ve never seen the amazing pianist Lyle Mays like this before:

Have you ever seen a blog like this before?

Thanks to all who helped me create today’s never-seen-before post and to you — of course! — no matter how you’ve been seen before.

Categories: heart condition, heart surgery, personal growth, photojournalism | Tags: , , , , , | 49 Comments

Day 1367: What does “INR” stand for?

Because I need to take the drug Coumadin  (aka Warfarin) for the rest of my life after getting a brand new shiny mechanical heart valve exactly a week ago, “INR” is now an important abbreviation in my life.

So what does “INR” stand for?

Answer # 1: International Normalized Ratio.

Coumadin is a blood anticoagulant, and everybody who takes it needs to combine the right dosage of medicine with  consistent food choices in order to prevent both internal bleeding AND stroke, maintaining that all-important  International Normalized Ratio.

Answer # 2: I Need Rides.

In order to establish and maintain a consistent  ratio of medicine and Vitamin-K-containing food as soon as possible, I Need Rides to get my blood taken and evaluated. Because I just had heart surgery, I cannot drive. My boyfriend, Michael, who has been an excellent caregiver, also does not drive.  Therefore, I need to impose on others to to get me to blood tests and to cardiac rehab (starting in a week or two).

Answer #3: Independence Needs a Rest.

I am a fiercely independent person. People who have heart surgery and who have trouble asking for help sometimes have emotional as well as physical pain in the weeks after surgery. I must learn to put aside this need for independence  as I recover, and ask for rides and other things I need.

Answer #4: I’m Never Ridiculous.

Even though I may fear that I look and sound ridiculous as I recover, I don’t.

Answer #5: It’s Not Rational.

People recovering from open heart surgery sometimes have irrational fears (e.g., sneezing is going to burst the wiring of their sternum, one of their cats is going to infect their stitches,  or sex will kill them). These irrational fears are typical and fade as the days of recovery proceed.

Answer #6: Inconsistently Not Replying.

Because I’ve been so busy healing from heart surgery and making the long trip back from the Mayo Clinic in Minnesota to our home in Boston, I have not been able to keep up my previously perfect record in replying to all the comments in this blog. I hope my readers can forgive me.

Answer #7: Images Not Relevant.

When I just looked at all the images I captured on my iPhone yesterday — my last day at the amazing  Mayo Clinic in Minnesota — I am realizing that none of those  images are relevant to today’s blog post topic.

Answer #8: Irrelevence Now Rules!







Answer #9: If Needed, Respond!

Categories: heart condition, personal growth, photojournalism | Tags: , , , , , , | 60 Comments

Day 1366: Did you even have heart surgery?

Yesterday, the doctors and nurses at the Mayo Clinic in Minnesota kept asking me variants of today’s blog title:

Did you even have heart surgery?

I’m surprised they had to ask, because we’ve been planning this valve-replacement surgery for me since last May, and you would think the amazing staff at such an esteemed institution would know whether a patient actually had a scheduled  procedure, as I did on Wednesday.

Maybe they were asking whether I had really had heart surgery because:

  • my surgeon, Dr. Joseph Dearani, decided to discharge me considerably sooner than expected, last night,
  • my boyfriend Michael and I are flying back to our hometown of Boston today,
  • my very unusual heart was pumping even better than anybody had even dreamed it could, so soon after the trauma of open heart surgery, and/or
  • I look so friggin’ good.

I will answer the question in today’s title as follows:

Did you even have heart surgery?

Yes! And I am so grateful. 

Do these look like photos taken by somebody who had major heart surgery less than a week ago?





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This person who had heart surgery and her caring caregiver, Michael, will be flying over the territories shown in that last photo. If we hit any air turbulence, I’m sure I’ll know I had heart surgery, even if nobody else can tell.

Did you even read this blog post today? Please let me know, in a comment below.

Categories: adult congenital heart, heart condition, personal growth, photojournalism | Tags: , , | 90 Comments

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