Post Heart Transplant: It’s NOT all Rainbows🌈 & Unicorns 🦄

Leading up to and after my heart transplant, I relied on Facebook to share updates on my health. This now 2 year old post is from November 30, 2016. I’m “reposting” it here because I think it’s very telling about my life after transplant.

I’m not cured, rather 8 months post transplant I’m still healing, while I’m also dealing with my 1st ever seizure, new breast cancer diagnosis, surgery and my Mum battling Stage IV Ovarian Cancer. She would die 7 months later, two days prior to my 41st birthday. I still cry when I think too much about my Mum because I miss her so much. In fact, I’m crying as I write this…. 🙏💗🌸🕊

My Mum is pictured here with my grandfather (Poppy). I have so many happy memories of them and summers spent at The Cottage in the Finger Lakes region of NY. May their memories be a blessing.

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Facebook Post, 11/30/2016

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 [as if].

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.

My “F#cked” Medical Bracelet! I’m mean really how many diagnoses can fit on one alert ID?!

I learned today that I’m not a candidate for a radiation clinical trial, this is no surprise to me. Esp, as rads are what caused my 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 me 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.

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Thank you for reading this blog on a post. It remains true to this day: I read all your comments and every “like” brings me joy.

2 thoughts on “Post Heart Transplant: It’s NOT all Rainbows🌈 & Unicorns 🦄

  1. Jen- You amaze me! What a wonderful positive life you are leading- It’s fun & heartwarming (!!) to see where you’ll go & what you’ll do next. Your hard times are managed with so much love & support from so many- We all wish we could take away your pain, both physical as well as emotional, and we know that the hugs from all (including God) will surely sustain you. Bunches of love!

    Liked by 1 person

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