I can hardly believe it’s been 9 weeks since transplant and that I’ve been discharged for 6 weeks! I’ve officially been home longer than I was inpatient at this point.

We continue to make some forward progress. We backed off my steroid dose this weekend which was good news! However the smaller dose also meant my sugars weren’t running as high 🙌🏻 and I required less insulin. I even had a few lows. It was a lot of coordination with the transplant nurses, where I would call them with every pre-meal blood sugar and they would tell me how to dose insulin and we are still adjusting. We celebrate the victory of getting to reduce the steroids.

We also had a little hiccup when we tried to back off my diuretic last week and I gained 4 pounds in two days. This told the team that my heart still needs a little help, so we went back to my old dose. You win some, you lose some. We are going to retry backing off the dose a little slower/gradually.

I just got off a telemedicine with my PCP and she figured out that my thumb numbness is tendinitis and we are going to try a thumb brace for two weeks. She believes when I was intubated for 5 days that my thumb was probably in a funky position and sprained the tendon. We hope the brace works or she would have to inject it with a steroid shot to get the inflammation down.

We also talked through how I was doing mentally. She forewarned me to ride the waves when I was discharged so we talked through: anxiety waiting for the other shoe to drop after 5 years of it constantly dropping (we hope it doesn’t), trying to process why I received this heart while others are still waiting, processing the trauma of 5 years of fighting to be believed and treated appropriately by many physicians (many of them colleagues of the same ones who sent me for a transplant) and how we went from fluid management to a transplant in one admission and 18 days. I’ve been blessed with this incredible woman and physician for the past 5 years and I don’t know what we’d do without her.

We’ve been continuing to get our steps in and earlier this week I walked my first 5K.

We’ve been signing up for virtual challenges to keep us motivated and even doing a “25 miles before Christmas” one right now. 🎄 Do we do it for the metal? You betcha! 🤣

As we head into thanksgiving we are grateful for my donors gift, my health and the fact that we are celebrating a holiday at home. Happy thanksgiving y’all!