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:

IMG_4503

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.

IMG_4446 IMG_4447

  • 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).

IMG_4468 IMG_4469

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:

IMG_4470

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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IMG_4453 IMG_4454 IMG_4463 IMG_4466IMG_4467

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

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43 thoughts on “Day 738: Plans for today

  1. amy eden

    Hi Ann- I read your posts everyday . I just wanted to tell you how happy I am about this post as I’ve been worried about you. Sounds like you’re in ( many) great hands. amy

  2. Congratulations on lots of time to make lots of plans 🙂 This is good!!! 🙂

    And the snowball maker- crikey! 😀 that’s taking out all the fun from snow! 😀

  3. It is nice to know that there are caring medical professionals!

  4. STAY WARM!!!

  5. Chilly here too!

    And like Liisur — A snowballmaker!!!! What will they think of next.

    My sister had a valve replacement 5 years ago — she is in the best health of her life! Runs, hikes, does fitness challenges. She said afterwards that she realized after all her fears and concerns, the only real decision was a pig’s valve or artificial valve. She’s vegan. Her heart beats strong! 🙂

    I find it very moving that your son goes with you — what a beautiful thing.

  6. I’m so happy for your wonderful experience at Children’s and the great news from Dr. Landzberg. He has a very kind and welcoming face, doesn’t he?

    Yikes! Your weather! It’s much warmer here in WV; by a full nine degrees!

    The snowball maker cracks me up! I love how it says that adult supervision is required. Not only will little Billy’s hands stay warm and dry, his mommy will be hovering over him as he hurls soft, safe snowballs at neighborhood bullies! 🙂

  7. First, I have to say how terribly sorry I am it is so cold there! I hope you, Aaron, Michael, and Penny are able to deal with it.
    Second, snowball makers???? Takes half the fun out of a snowball!
    Third, I am glad your new doc says “no rush” to do anything.
    Fourth, my heart doc has his dog with him at the office. I love him for it!
    Now, just to make you miserable, it is quite comfortable in Miami!

    • Aaron, Michael, Penny and I all survived the deep freeze today, Emilie. Thank you for your kind concern.

      I love your heart doc now, too.

      And you didn’t make me miserable. Quite the contrary.

  8. Sunshine Jansen

    “No more cold hands!” I’m thinking about all the things that could come in boxes to protect us from any genuine personal experience of reality’s pleasures or pains… On a 100% more optimistic note, I’m feeling very good about all the genuine people you have around you!

  9. What wonderful Doctors- it comes through in your photos in their faces and smiles. Knowing you are in the hands of people who really care makes such a difference in managing health problems I believe. I too am freezing it out here in NJ today-it’s a balmy 12 degrees! 🙂

  10. What wonderful news! Wonderful doctor, too.

  11. Now that was a good day 🙂 May it warm your heart, toes and fingers for today!

  12. Love that you’ve got such wonderful support people behind you during this, it makes things easier when you feel they have your best interest at ‘heart’ 🙂

  13. Your experience reminds me of the good ole days when doctors actually spent time with their patients to explain things. Sounds like your team not only looks after your heart, but looks after your heart, if you know what I mean. ❤ 😉
    Diana xo

  14. What a great day, Ann. Wonderful. Fantastic. Tremendous. You have a top new doctor on your team, and he likes the squad that you’ve put together.

    We don’t need no stinkin’ snowball maker. We have the original equipment and know-how.

  15. Great news Ann, and thanks so much for the “Air” video by Johann Sebastian Bach. I also liked the forgiveness questions written on the dry board. Thanks for that.

  16. Forgive is a gift that can sometimes very difficult one give. However, it is an important gift that you need to give..

  17. Your doctors seem much more smiley than mine. I am not sure what to make of that. My heart is not that unusual, so that could be it. (I’m not unusual in any way.) But I think it has to do with that Ann– thing. People just smile when they are around you. Not all the time, but way way more than average….

    • I think it’s very unusual that you find yourself not that unusual. And I’m definitely more smiley when you comment here.

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