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:
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
and Dr. Michael Landzberg
… 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.
- 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).
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:
… 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:
- 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,
- His recommendation that I soon get a new test called a cardiac scan, to give everybody more information about my difficult-to-photograph heart,
- His saying “there’s no rush” regarding any invasive procedures, including surgery,
- 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,
- 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,
- I heard amazing but true stories about my childhood cardiologist, Dr. Walter Gamble, and
- 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:
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).