— Although still weary from the ongoing battle, Chris Sandeen was pretty thrilled to share the news that his daughter Alyssa has been put on the active transplant list for a new heart.
Alyssa, 22, who was diagnosed with cardiomyopathy at age 8, is a status 1B on the donor list, according to a Facebook post by her mother, Lisa Sandeen. Status 1A is the top priority status for patients who are critically ill, and 1B patients are the next highest priority. Chris said, however, there’s no way to know how long the wait may be.
“It was a big thing to get her activated because we just don’t trust her existing heart because it doesn’t give you much of a warning when she’s going to go into cardiac arrest,” Chris said. “They think her heart is pretty much at the end of its life span.”
Cardiomyopathy is a weakening of the heart muscle that caused her heart to grow four times its normal size. Doctors at the time said she had less than a 5 percent chance of survival. She likely had a day or so to live when a donor heart became available in 1998 from a 5-year-old Virginia boy who died in a car accident.
Over the years Alyssa has had related health problems. And a few weeks ago she was hospitalized in Rochester after her heart stopped beating twice. She was placed on a heart and lung machine as doctors worked to help her heart supply blood to her brain. She remains in Rochester.
Although she underwent CPR for more than two hours, her verbal communication afterward indicated her brain was not compromised. She since has been unhooked from the machine.
“She is doing good other than she has that severe pain in her right leg from the compartment syndrome, which they say that is good (sounds kinda crazy) to have the pain,” Lisa Sandeen wrote. “That means that the leg is healing.”
Doctors were waiting for Alyssa’s leg to heal, among other improvements, before placing her on the active transplant list. Due to a lack of blood flow to the leg during the long course of CPR, the leg was damaged and Chris said doctors feared her calf muscle may have died.
“It’s looking pretty good at this point,” Chris said.
As for Alyssa’s spirits, Chris said they are improving, too.
“She was kind of down in the dumps for quite a while, and that’s not really her,” he said. “Now that her leg is kind of improving and she’s on the active waiting list, she’s been pretty happy these last couple of days.”