I had to cancel my London & Spain trip to see Tori Amos. I’m redefining what it means to live in technicolor. It’s time for new goals.
To be blunt…shit is getting real. I’ve had some serious health setbacks. I’ve been in the hospital for about 3 weeks. I’m home now and so grateful for the peace and quiet. In the middle of all of this, Adam had surgery on his knee to repair a torn minscus.
A sad pair, Adam healing after knee surgery and me inpatient for a blood clot and organ rejection. Austin & Dallas, March 2022.
I was walking my dog, Wookie, and I had an episode of chest pains with shortness of breathe and crawled back to the house. We went straight to the ER. I really thought I was having a heart attack.
It was discovered that I had a blood clot in the lung that had Non-Small Lung Cancer last year. Despite it being a “small” pulmonary embolism, I felt like I’ve been run over by a truck. More testing revealed that I am also experiencing heart organ rejection. It feels like I have the flu.
I’m six years post transplant and I’ve never been in rejection before. I also have a narrowing on the veins between my heart and the rest of my vasculature (vascolopathy). It’s grim. I have heart recipient friends that have needed a second heart transplant because of vascolopathy. I need to be cancer free for five years (I’m not even at a year) before I’m eligible for a second transplant.
What’s the treatment for heart organ rejection?
I will be doing IVIg infusions, which will help my body make antibodies to fight rejection. I will spend a day, maybe two at the cancer clinic in Austin every 6-8 weeks for the infusion. I’ve had one treatment already and despite bone crushing fatigue, it was more manageable than a chemo treatment. I can do this, but I’ll admit I’m getting weary. Sigh.
What’s my prognosis?
I don’t know my prognosis and I’m not asking, because it doesn’t change my life. I just want to be surrounded my friends and family doing things that bring me joy.
I am encouraged by my transplant team’s support and when they say, “we’ve seen this before,” or “we haven’t even scratched the the surface of medication and interventions to treat your rejection.” I’m remaining optimistic.
I have a reached a point, mentally and physically that I need more help than I’ve needed recently. Many have asked me, “what can I do for you?” I’m working on a list of ideas that would help us. Anything that you are able to help me and Adam would be gratefully appreciated.
Thank you for reading and keeping up with my journey. I’ve had some dark days lately, and when I think of the love and friendship that surrounds me, I’m humbled and my spirit is lifted. Your prayers and healing energy reach me, day and night, and I’m so grateful. You give me the courage to face the suffering and adversity. Thank you. 🥊💚🫀🫁❤️🩹🚫🧂💯