Posts Tagged With: Levo-transposition

Day 825: Seeing the light

Yesterday, I expected to see the rain, because of the weather report. Not uncommonly around here, the weather report was wrong and, instead, I saw the light.

Yesterday, I forgot my cell phone when I went out into the light to meet my childhood-through-present-day friend Barbara for brunch, so no photos of that wonderful meeting will see the light.

During my time with Barbara yesterday, we talked about many things — from the light to the heavy — including:

  • memories from our childhood,
  • medical issues,
  • coping strategies,
  • many people we’ve loved over the years,  including our parents,
  • this blog,
  • how to do better accepting the light of other people’s praise and positive feedback, and
  • vacation getaways, including this one:

 

I told Barbara how, during some dark days I was having last week, that video of the Underwater Room in Africa had lightened my mood.

Talking to Barbara for hours yesterday lightened my mood even more.

We both lost track of time and expected to see parking tickets alighting on our cars, but we saw nothing on our cars but light at the end of our enlightening time together.

Yay!

Later, in the light of a local shopping mall, I saw the light of these five things, with my boyfriend Michael:

    

I realize that in the light of this blog, that looks like six things, not five. Allow me to shed light on that:  At the restaurant last night, I turned the table number upside down (which prevented the server with our food to see the light of our location, temporarily).

I shall now enlighten you about why I was playing with that number in the light of the mall restaurant, by sharing the lightness of this joke (which I heard, many years ago, on a  Joke Show radio hour of Garrison Keillor’s Prairie Home Companion):

Boat rental employee (through megaphone): Boat #99, your time is up! Please bring your boat back to the dock.
Other boat rental employee: Ummm, we only have 70 boats to rent here.
Boat rental employee: Boat # 66! Are you in trouble?!!!!

Speaking of trouble, I’ve been feeling like my very unusual heart (which is not upside down but backwards) is in trouble lately, and various cardiologist have agreed. I feel lighter, right now, telling you about two dates coming up in May 2015:

Sunday, May 3: I see Todd Rundgren at the Wilbur Theater in Boston, for the first time in my 62 years.

Monday, May 4: I go in for surgery a block away from the Wilbur Theater at Tufts Medical Center, which I hope will allow me to see the light of many more days.

I shall now bring to light an appropriate song for today’s post:

I’m looking forward to hearing and seeing Todd Rundgren perform “I Saw the Light” on May 3.

What lights have you seen in this post?

Light and deep thanks to Barbara, to Michael,  to the Easter Bunny, to Garrison Keillor, to Todd Rundgren,  to the Underwater Room, to the Burlington Mall, and to everybody who has a light to share with the world today, including you!

Categories: friendship, inspiration, personal growth | Tags: , , , , , | 31 Comments

Day 824: Aaaarrrgggghhh!!!

The title of today’s post is something I write to express:

  • disappointment,
  • frustration, and
  • fear.

People who know me might tell me I’m brave and even fearless, at times, but here I was, writing that very thing two nights ago:

Yes, I spelled it differently, but it’s essentially the same.

So why did I write

two nights ago?

Was it because:

  1. one very famous cardiologist told me recently that  if I do NOT have valve surgery immediately I will most likely  get sicker and sicker and then die a horrible death AND
  2. a  very trusted and also famous cardiologist  told me recently that there’s a 1 in 10 chance I would not survive valve surgery and even if I do survive it, that valve  surgery could very well hasten the deterioration of my very unusual heart?

That seems like as good a reason as any to write

… doesn’t it?

Nevertheless, I wrote

at a therapy group at work on Thursday night, because the topic we had chosen together was “Frustration.”

How do you express frustration, dear reader? Feel free to write

or anything else in the comments, below.

One thing  I saw yesterday, in particular, made me say

Can you guess which image it was?

                
      

By the way, that last photo of Winston at my work parking garage — as he was telling me “Every human being goes temporarily insane at some time” — did not make me go

… but another one of those photos did.

Here’s some music I heard for the first time yesterday, in celebration of Boston Red Sox Opening Day, on Monday:

“Fanfare for Fenway,” written and conducted by John Williams, definitely did not make me go

when I heard it. It made me go

YAAYYYY!!!!!!!

I almost forgot! Here’s something else that made me go

YAAYYYY!!!!!!
 

Yesterday, I heard people — at a big morning meeting at work — mention my name for being instrumental in creating positive changes they described as

REVOLUTIONARY!

I guess I also use that when I am

  • surprised by recognition,
  • praised in unexpected ways, and
  • don’t know what else to say.

A big YAY! of gratitude to John Williams, to Winston, to  people who attend my therapy groups, to supportive people at hospitals (including my trusted, long-time cardiologist Deeb Salem), to everybody I saw yesterday, and to you — of course!!!!!!! — for bringing all your arghhh!, yaayyyy!, and other reactions here, today.

Categories: personal growth, pride | Tags: , , , , , , , , , | 62 Comments

Day 822: April Fools

I would be fooling if I wrote that yesterday —  April 1/April Fools Day, 2015 — was an easy day for me.

Was I a fool to see several cardiologists on April Fools Day, as I tried to reach non-foolish decisions about my foolishly unusual heart?

Here’s something I foolishly took a picture of, as I was waiting to see the first cardiologist on April Fools Day:

Here was the most foolishly scary thing I heard all day yesterday, soon after I took that foolish photo:

Your current doctors have been foolish by not replacing your valve before now. Valve surgery is the only thing that can save you. The operation may kill you, but if you do nothing, you will keep getting worse and die a horrible death.

You may think I am foolishly exaggerating what that first cardiologist said. I am not, although I foolishly cannot remember each one of his exact words.

After I heard those words (and many other scary ones), I shed a few tears. As always, it was NOT foolish to cry and to have my feelings.  Then, I went to the hospital where my long-time cardiologists — Dr. Salem and Dr. Estes —  have been treating me non-foolishly for over 30 years.

Here is Dr. Salem, trying not to make a fool of himself as he is interviewed on the phone by the Boston Business Journal:

Dr. Salem discussed many possible next steps with me, including:

  • Valve surgery
  • Pacemaker/defibrillator surgery
  • Heart transplant
  • Wait and see.

When I told him the scary words I’d heard from the cardiologist earlier in the day, Dr. Salem explained why those words  were foolish and not true. During the many years I have been working with Dr. Salem, he has helped me let go of foolish fear because of foolish  words I read or hear about my extremely rare cardiac condition, which can easily fool doctors who don’t know me well.

After I saw Dr. Salem on April Fools Day, I met with Dr. Mark Estes, whom I foolishly did not photograph.  Dr. Estes, like Dr. Salem, is no fool. He told me he has spent the last few months talking to as many non-foolish experts about  hearts like mine and reading as many non-foolish articles as he could find, in order to make his best, unfooled recommendation to me. Here was Dr Estes’s April Fools Day recommendation:

Replace my current cardiac pacemaker with a pacemaker-defibrillator combo and add new wires to pace and synchronize both ventricles of my heart.

Because I had foolishly not eaten enough yesterday and because I was still feeling the foolish fears from my first cardiology appointment earlier in the day, I foolishly did not write down all of the details of Dr. Estes suggestions, including the name of his recommended surgical procedure.

I am no fool, though, because I do remember all this:

  • This surgical procedure has a 50% chance of increasing my life longevity,
  • It is much less dangerous than valve surgery,
  • If it doesn’t work, we can always consider valve surgery again,
  • We scheduled this recommended surgery for May 4, and
  • The first  week of May is the week I was already planning to take off from work in order to enjoy the spring, which will be so foolishly and spectacularly gorgeous for all of us Bostonians who have survived this year’s foolish winter.

Be still, my foolish heart!

Actually, that’s a rather foolish thing to write, considering the circumstances.

Last night, I foolishly took all of these April Fools Day pictures:

          

      

      

What “Fool” song would you choose for this post-April Fools Day post?

Here’s my choice, about a fool on a hill:

No fooling: I’d be foolishly pleased if you leave any fool songs, questions, or comments below.

Heart-felt, day-after-April-Fools thanks to Dr. Deeb Salem, to Dr. Mark Estes, to Paul McCartney and the Beatles, to cardiologists everywhere, to those who try their best not to get fooled again, to hearts that follow their true path, and to you, my non-foolish and much  appreciated reader.

Categories: gratitude, personal growth, photojournalism | Tags: , , , , , , , , | 55 Comments

Day 817: What kind of day was yesterday?

What kind of day was yesterday?

I’m not sure  how to characterize my day yesterday. Maybe  you can help me put words on what kind of day it was.

Yesterday was a day when I:

  • created and ordered this t-shirt online,

  • got a flat tire on the way in to work, after my car met up with one of the kashmillion friggin’ potholes in my fine, snow-ravaged hometown of Boston,
  • was enough of an expert on the experience of flat tires that I was able to take care of that and get to work only five minutes late,
  • got my taxes done,
  • had some macaroni and cheese in the cafeteria of the hospital where I work,
  • met with somebody who was very interested in my therapy groups,
  • took these photos,

            

  • posted this in a Facebook group for people who have (or who love somebody who has) a very unusual heart like mine:*

I have a question, group! I am a 62 year old with cctga who developed a-fib in September 2013, and my doctors are now considering valve replacement. I’ve been hearing a lot lately about how adults with cctga become more prone to sudden cardiac death as we grow older. One of the cardiologists I’ve been consulting seems amazed that I have made it into my 60’s. Have other people heard about this as a problem?

One of my cardiologists is recommending that we replace my current pacemaker with a pacemaker/defibrillator combo before we do a valve replacement — an intervention I personally prefer because it’s less invasive. Actually, here’s another question: this same cardiologist says that if they replace my valve, this might actually make me worse. He is concerned they will put me on a machine during the valve surgery and will not be able to take me off of it because of the increased pressure to my heart because of the new valve.

Any thoughts, answers, questions about sudden cardiac death for people with cctga in their 50’s, 60’s, or beyond or about valve replacement dangers for people like me? Many thanks.

  • received several heartfelt and informative responses to that post–  that helped me feel hopeful, sad, scared, upset,  happy, worried, calm, surprised, and delighted — including this one:

Ann?! I’m like two towns over! I can’t believe that somebody with my condition is so close.

What kind of day was yesterday? What kind of words might describe it, for you?

I’d say that yesterday was the same kind of day as any other day:

  • A day that changed from moment to moment.
  • A day in which I had all my feelings.
  • A day of potholes and successes.
  • A day when I could connect with others, if I reached out.

I wonder what kind of day today will be? Here’s one thing  I know so far.

Today is a day when I’ve heard the song “Yesterday.

What kind of day is it, for you?

Thanks to the Beatles, to all who helped make my day yesterday,  and to people with hearts of all kinds, especially you!


* What kind of heart did I have yesterday? One with congenitally corrected transposition of the great arteries (cctga). The same kind of heart I have today.

Categories: inspiration, personal growth, photojournalism | Tags: , , , , , , | 47 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

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