I originally wrote this 4 years ago in November 2016 as a Facebook post. Trump had just been elected and I was 9 months post heart transplant and experiencing a series of setbacks: back to living 3 hours away from home, so that I could be near the transplant hospital, healing from a Grand Mal Seizure and dealing with breast cancer (because G-d has a sense of humor).
Thankfully, I’m doing better today. While I still have health setbacks, my hospitalizations and surgeries are far and few between.
Dear Diary……………November, 2016:
I hope to move back home to Austin soon. I’m healing well from what I’m calling my “2016 Election Seizure.” Jokes aside, a Grand mal seizure is intense…3 weeks later and I still have aches! Seizure seems to be result of a medication side effect. My dislocated shoulder is fine & I’m coming off my sedating anti-convulsant (since it was a 1 time, provoked seizure, with no brain trauma per MRI).
It’s challenging not being able to drive until early February (which, ironically will be my 1yr heart transplant anniversary). I feel like my freedom has been taken away. I’m relying on friends, family & Uber. I also can’t swim or bathe unsupervised and no climbing ladders or operating machinery. No gutter cleaning or weed whacking for me.
One of my doctors, checked my medical alert bracelet (this happens often actually…). Anyway the MD stated, I might need to ADD seizures to my list on my ID. I laughed and told her, I think at somepoint it might just read, “Diagnosis: I’m fucked!” Lmao. I gotta laugh.
I learned today that I’m not a candidate for a radiation clinical trial [to treat my breast cancer], this is no surprise to me. Especially, as rads [from my none cancer treatment as a teen] are what caused my current breast cancer (since I have no genetic breast cancer markers & cancer is in radation zone from bone cancer, which is genetic). It’s all “late effects.”
A mastectomy remains planned for the spring (April, I meet with surgeons again). They got the cancer out in October with a lumpectomy, but more needs to be done to protect from future recurrence. I’m not worried about the cancer, it’s the surgeries that are tough.
My current goal is to avoid the hospital and all illnesses. I think I’ve been hospitalized 4 or 5 times since Labor Day…even for the common cold.
My other goal(s) is to experience JOY. ❤
Joy in being with my family and friends. Joy in planning my countless trips I want to take, all over the world (for now, I want to have a stateside “Bon Voyage to my Boobies Beach Bash”). And joy in being home with my husband, my beloved.
Something else on my mind is what’s next for me? What do I do when I return to civilian life? What is my next vocation if I’m not a professional patient? Just what’s on my mind.
Thank you for reading this long update and for your support. Your every Like and comment is read, absorbed and deeply appreciated. I don’t feel as alone in this journey.
2 thoughts on “Setbacks After Heart Transplant 🙄 & Seeking Joy 💗 (Originally Published in November 2016).”
I am sending joy and fun vibes your way for 2021! I heard some neighbors laughing recently and it reminded me of the importance of joy, especially during this loooong pandemic. Thanks so this inspiring post. 🙂
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You’re a dear friend, thank you.