Slow Life
My two days of testing went well this week. The right heart cath results were almost identical to the results a year ago. So I am stable! Labs were good although my kidneys continue to struggle but they appear to be stable overall. I was relieved and happy with these results. We will repeat the…
May 2025 Update
Next week I have two days of appointments at the hospital. The first day I’ll have labs, a cardiopulmonary stress test and a right heart catheterization. These tests tell doctors if I am sick enough to be admitted to wait for a heart and move up to a different transplant status. I remain at transplant…
Wait For It
I am a late adapter. Last month I purchased my first iPhone without a home button. Last summer I traded in my 2008 CRV and bought my first vehicle with Bluetooth so I can finally make hands-free phone calls while driving. I don’t mind waiting for new and expensive things to become old and affordable.…
Sabrina
Many years ago I met another ARVCer named Sabrina. She was a young mom like me and lived in West Virginia. While our struggles with ARVC were a little different, we bonded over our shared roller coaster journey with ARVC. She struggled for years with finding doctors that could treat her properly. Last summer she…
May 2024 Update
May has been very busy! Mark and I traveled to St. Louis to visit his daughter, Elyse. Above is Elyse and I at a Cardinals game. Below that is Mark and Elyse at her place of employment – The Federal Reserve Bank. We really enjoyed seeing the life Elyse has built for herself in St.…
500 Days
Next Monday I will have been listed for heart transplant for 500 days. I am listed as a status 4 patient with little hope of being matched because I have so many antibodies. Status 4-6 wait at home for hearts while 1-3 wait in the hospital. The lower the status number, the higher you are…
January 2024 Update
I can’t believe it’s 2024 and I still have this crazy ARVC heart. I was very hopeful 2023 would be my year for transplant but I am grateful to have my original heart and not be dealing with anti-rejection treatments yet. The adjustment to Ava’s high school schedule has made my days look a little…
November Testing
I was at the hospital most of the day last Wednesday. Tests results were mixed again but overall stable from six months ago – which were stable from a year ago. So my doctor and I decided to wait another six months to test again instead of hospitalization. It’s been two and a half years…
Three Clocks
“You love me too much, Mom,” Ava once said to me in a critical tone. She was annoyed that I was “fussing” over her. I replied, “That is one criticism I will proudly own, Ava.” While this wasn’t the response she was hoping for, I admit that I know what she is talking about. There…
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Heart Sick 