Posts Tagged With: Dr. Michael Landzberg

Day 738: Plans for today

Here’s an exchange I just had with my boyfriend Michael:

Michael:  Are you up for the day, babe?

Me:  Yes. My plans are to go write and get my thoughts together, and not die.

Michael:  In that order?

Allow me to explain some things about that:

  • I went to bed early last night, because I was exhausted after a long day of (1) seeing a new cardiologist and his team at Boston Children’s Hospital, my childhood hospital home-away-from-home (2) facilitating part of a therapy group at work (my cardiology appointment went so long I was late getting there, which wasn’t a problem because I had warned the participants ahead of time), (3) lunch with my son (who had accompanied me to my cardiology appointment), and (4) hanging out with Michael at Panera Bread, PetSmart and Olympia Sports (so Michael could get some gloves)  .
  • The “not die” remark is NOT related to my cardiology appointment, but rather to this current temperature in Massachusetts, USA:

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This is what I notice about that screen:

I HATE it when somebody (or something) tells me what I’m supposed to feel like.

One of the many things I loved about my appointment with the Boston Adult Cardiology Heart team yesterday, including Disty

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and Dr. Michael Landzberg

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… is that nobody told me what I was supposed to feel like. Everybody there was so open, empathic, understanding, and  knowledgable, that — at the end of the appointment (right before I took the above photo) —  I said, to Dr. Landzberg

I am very moved by this experience.

And Dr. Landzberg seemed perfectly okay that I could not speak, for a moment.  My soon-to-be-17-year-old son Aaron, who was sitting to my left, seemed okay about that, too.

Why was I so moved by a cardiology appointment, with treaters I had never met before yesterday?

I shall now attempt to meet my initial plan for the day (if you don’t want to look back at the beginning of this post, it’s “write and get my thoughts together”):

  • The waiting rooms, at the Adult Cardiology Clinic at Boston Children’s Hospital,  were all very cheery.

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  • Everyone I met there, including the people taking my height and weight, treated me with care and respect.
  • One of the medical assistants — who looked young, healthy, and happy — told me she’d had a heart valve replacement, which is one of the surgeries I’ve been fearing.
  • Disty and Dr. Landzberg know my current cardiologists very well, and they had wonderful things to say about all of them.
  • Disty and Dr. Landzberg told me about an organization they thought would be very valuable: the Adult Congenital Heart Association.
  • Using insider information previously supplied by one of my cardiologists (Dr. Mark Estes), I referred to Bob Dylan twice during my conversations with Dr. Landzberg, which I THINK he appreciated.
  • Dr. Landzberg — as advertised by another patient who lives in Canada and whom I’d met on this special Facebook page for people dealing with very unusual hearts like mine — gave me some perfectly appropriate hugs.
  • Even though Aaron missed a day of school yesterday while accompanying his mother on this appointment, he learned a lot, including the comparative structures of not-so-normal and normal hearts (which they’re studying in his 11th-grade biology class, right now).

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Ooops! I know those two illustrations of a normal heart and a heart with congenitally corrected transposition of the great arteries — which Dr. Landzberg drew for me and Aaron yesterday on the examining table paper — are difficult to see.

Here’s the last thing Dr. Landzberg drew on that paper yesterday, which I really wanted to show you:

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You need

smart experienced

people thinking

about you

… which I don’t plan to disagree with.

My other plans for today include telling my readers other facts they might want to know about this appointment, including:

  1. Dr. Landzberg’s eagerness to work together with my other cardiologists to figure out the best courses of treatment for me, as I grow older and witness the ongoing, amazing blossoming of my son,
  2. His recommendation that I soon get a new test called a cardiac scan, to give everybody more information about my difficult-to-photograph heart,
  3. His saying “there’s no rush” regarding any invasive procedures, including surgery,
  4. His telling me that some of his patients — who had difficult experiences like I did as a child at Children’s Hospital — see him at a different hospital, as they choose,
  5. His enthusiastic endorsement and prioritizing of my getting my heart in the best shape possible, including spending more quality time with Danise, Carla, and Kathy at Cardiac Rehab,
  6. I heard amazing but true stories about my childhood cardiologist, Dr. Walter Gamble, and
  7. My working conclusion — after talking to the smart experienced people at the Boston Adult Cardiology Heart (BACH) program at Boston Children’s Hospital — is that I have, most likely, lots of time to make lots of plans.

I now plan to celebrate all that with a musical pun — that is, a different kind of BACH (with over 9 million views here on YouTube):

Other plans I have for this post?  Here are some more photos I took yesterday, after spending  8:20 – 10:35 AM (but who’s counting?)  at the Boston Adult Cardiology Heart clinic, at Boston Children’s Hospital:

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My final plan for this post is to ask this question: Is that equipment really necessary these days, for kids planning to throw snowballs?

Many thanks to all those who are on my smart and experienced team, including Michael, Aaron, Disty, Dr. Michael Landzberg, the other wonderful people at BACH, Bach, the LTGA (CCTGA) and Double Switch Facebook group, Dr. Mark Estes, Dr. Walter Gamble, Penny the Pen, and you (no matter what your plans are today).

Categories: inspiration, personal growth | Tags: , , , , , , , , | 43 Comments

Day 722: I told you so

Yesterday morning,  I was treading on the treadmill at cardiac rehab

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and  Danise

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said, “I told you so!” as she recounted a story about her weekend.

I don’t know if I told you so before, but I often listen to conversations around me and if I find them interesting, sometimes I interrupt!
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If you have a judgment (or any other thoughts) about that, feel free to tell me so.

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Anyway, Danise and I told each other a little bit about “I Told You So” while — as I already told you so — I was treading on that treadmill. We agreed that “I Told You So” might make a good t-shirt. I also told Danise it would make a good title for today’s post.

If I haven’t told you so before, I’ll tell you now:  I almost never say “I told you so.” Why not?  I don’t think people like it if you tell them:

  1. I was right,
  2. You were wrong, and
  3. You should have listened to me.

Who wants to be told that?

If you tell somebody “I told you so” and  they react poorly, all I can say is …

… I told you so.

See?  How did that feel?

I told you so far, in this post, about Danise talking about her weekend and my working out at cardiac rehab.  What have I told you so far, in This Second Year of Living Non-Judgmentally, about recent developments with my very unusual heart?

Even if I told you so before, I’ll tell you this again:

  1. Several cardiologists in the greater Boston area have different beliefs about what’s going on with my very unusual heart and what should be done about it.
  2. I’m hoping, with all my heart, that the doctors who believe I need major surgery soon will NOT be saying, “I told you so,” any time soon.
  3. As I’ve told you so many times in this blog, I have a lot of trust and admiration for my primary cardiologist Dr. Deeb Salem, who is a good listener and a great doctor.
  4.  On January 7, I’ll be seeing THE specialist for adults for my very rare congenital cardiac anomaly, at Boston Children’s Hospital.  How do I know this guy is THE specialist?  Several people have told me so.

I’ve told you so many things about my heart situation, lately. I’m not sure how comfortable you are, reading those kind of details. Perhaps I haven’t told you so in so many words, but it’s helpful for me to write about all this, here.

Even though I don’t say “I told you so” very often, I do like to form my own opinions about what’s going on with me medically, which can conflict with what the experts are saying.  If I’m right (and the experts are wrong), those are  opportunities to say, “I told you so.”

For example, when I transferred my care from Children’s Hospital in 1980 to work with Dr. Salem, he wanted to find out why I was born with a complete heart block — where the atria of my heart were NOT saying “I told you so, so, so, so, so, to beat after me” to the ventricles — necessitating my having a pacemaker at age 10. At that point, nobody had told me so that my heart was super unusual. Why? Because nobody at Children’s Hospital had discovered that I had congenitally corrected transposition of the great vessels (to be fair, cardiology technology wasn’t sophisticated enough to tell us so, back then).  I don’t have time to tell you so much the whole story of all that right now, since I need to go get a detailed cardiac stress test this morning — to get more data so the cardiologists can tell me so much more about what the &*#@!!&(# is going on with my weirdly unusual heart.  But I do want to tell you (so you will get my point)  what I did, back in 1980 when I disagreed with Dr. Salem’s conclusion that I might need heart surgery, after he discovered the truth about my bizarrely strange heart.

When Doctor Salem surprised me, while I was waiting for pacemaker replacement surgery in the hospital, by telling me so much about my heart, including that they might need to sew the pacemaker wires onto my heart after I had believed, for many years, that I would NEVER need that kind of surgery again, I got up out of my hospital bed and started packing my bags, to leave. Dr. Salem — whom I’ve told you so many times is a wonderful doctor — was empathic and creative enough to figure out, with me, another solution. And, since age 13 and until today — when I’m telling you so much, so quickly — I’ve never had heart surgery, again.

As I’ve told you so, above, I need to leave soon to go to a cardiac stress test today. But I have time to tell you one more story, about how I sometimes take opportunities to say, “I told you so!” to my doctors.

Last Friday, after synthesizing all the conflicting medical input I’ve been getting, I wrote an email to Dr. Salem. The subject of the email was:

By the way, here’s my working recommendation for what to do with me

A judgmental critic might disapprovingly say “I told you so, don’t do that!” regarding that email, because:

  • I came up with my own recommendations, even though I’m just the patient, and
  • I wrote such a friggin’ long subject for that email.

Would you like me to tell you what I told Dr. Salem in that email, so boldly?

You can tell me that you want me to tell you so, now. But I’m not going to tell you.

Why?

I may have told you so far, during my blogging journey, that I like to tell stories effectively. Therefore, I think it would be better if I tell you later, not now,  what I wrote in that email.

When will I tell you so much more about the contents of that email, and my prediction and recommendation about the best course of action for my heart? Probably, after I get the opinion of THE expert at Children’s Hospital, whom I’m seeing on January 7.  Honestly, dear readers, wouldn’t that make a great telling of the story? Especially if — based on what Dr. Michael Landzberg tells me — I’ll be able to say “I told you so!” to all those cardiologists who think I need a valve replacement or even more invasive heart surgery in the near future.

I told you so much and so little so far, today. Personally, I think it’s time I told you so, visually, with these other photos I took yesterday:

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What am I telling you, in that photo I took at cardiac rehab? I told you so many people are stressed out over the holiday!

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That’s Mary, whom I work with. If I haven’t told you so many times before this that I love working with her, I’ll tell you so now.  Before I took that photo, Mary told me this, “That diploma is in Latin, so nobody can tell how old I am!”

Have I told you that I park in a garage and easily walk the miles back and forth from work? (By the way, that’s more data that has gone into my personal recommendation about treatment for my heart, contained in my email to Dr. Salem, which I’ll be telling you about later.)  Here’s what I saw, yesterday, in that garage:

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That car is saying, “I told you so that I’m a reindeer!”

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Let’s see if my iPhone is saying “I told you so!” about having more cool pictures from yesterday I can tell you about, right now.

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If you have any reactions to anything in this post, please tell me so in a “I told you so!” comment (or not).

Oh!  I forgot to tell you so about the song that woke me up this morning.

That’s Los Lobos, telling so many people, live, “Don’t Worry, Baby!”

I told you so!

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Thanks to Dr. Salem, to Dr. Michael Landzberg, to Mary, to Danise, to Los Lobos, to anybody anywhere who has ever told me so (or told me anything else). And, thanks to everybody to whom I’ve ever said, “I told you so” … which now includes YOU!!

Categories: personal growth | Tags: , , , , , , , , | 27 Comments

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