That is all that is keeping us here. Headaches and steroids.

Katja is doing amazing from a heart standpoint. Her function looks great and she has so much energy. She’s been walking around the hospital for the last 4 days, enjoying the sights, the gardens and meeting new heart friends.

Her appetite is returning to normal and she’s feeling more like her old self.

But the headaches are coming out of nowhere and completely wiping her out. Sunday she had two. One in the afternoon and one at night. She barely ate that day. We moved some med times around to space things and then they started her steroid weaning in a hope to alleviate some of the pain. Yesterday we went all day without one. We had hoped we finally figured it out.

Around 5pm we got the news that the Step Down unit finally had an open bed for her and she was transferred. About 15 mins after arriving in her new room she warned us that a headache was starting. Unfortunately this side didn’t have all her meds ordered yet and this one came on fast and strong.

She was in a lot of pain for a good 30 mins before the pharmacy finally got her Dilaudid upstairs. It completely wiped her out for the evening and she refused dinner.

Neurology has been involved since they started Friday. She’s had a CT scan that was normal and Cardiology/Neurology have been arguing about a MRI (Cardio says no because it’s sedated and she’s to fresh off Bypass and Neuro says it’s needed). So far Cardio is winning the fight.

Her team thinks it’s a combo of immunosuppressants and steroids but we honestly don’t know. This is the downside to a partial heart transplant. She’s on some really scary meds with really scary side effects (like CellCept and Tacrolimus) to stop her body from rejecting her new heart parts.

Her IV steroids are used to artificially reduce her immune system so her body doesn’t attack the new heart valves. The first round is an extremely high dose given the first week post transplant. It is IV only, so she’ll have to stay until she finishes the full course. Her labs were finally in range yesterday to start the weaning process. If they remain good while we wean, she should have her last dose Friday morning, which means we can leave Friday.

Our hope is to figure out the headache situation by then. Outside of those two things, she’s ready to leave. She’s doing absolutely amazing and we are so proud of her resilience.