I interrupt your election day coverage with this weeks update.

We spent part of our day driving to Bethesda to Suburban Hospital (Hopkins based Hospital) for a pre-procedure Covid Test. My nose will never be the same from all the pre-procedure tests I have to have done. For every outpatient cath/biopsy, I have to have a Covid test with 48 hours for the safety of everyone.

We are heading back to Hopkins Thursday AM for a mid-day Right Heart Cath and Biopsy. We are praying for easy/safe access (I have a lot of scar tissue in my neck from multiple previous lines), good filling/afterload pressures, no rejection, for the medical team on my case and a safe procedure and recovery. And good labs!

My labs improved over the last week and my Tacro levels are finally back right in range, so the team was quite happy. My other labs also improved so we were able to resume all of the anti-rejection/antibiotics/transplant regimen. Its a delicate dance, where a lot of meds are adjusted on a weekly, sometimes a bi-weekly basis. But the Transplant NPs assure me that this will eventually lessen in frequency as we find the right regimen and these adjustments are common at the beginning.

As I mentioned last week, I had an appt with Dr. M by general cardiologist and the master of Lipids. There was something so beautiful to get on zoom and tell him I felt good and for him to smile so big and be so happy to see me doing well. This may just seem nice, but we had a lot of stressful telemedicine appts and subsequent admissions where he knew clinically I needed to be admitted but hated doing it, because we both knew we never really made forward progress during those admissions. To be able to talk through what our plan could be like moving forward…was huge for both of us. He even started the conversation by asking, “how are you doing? Not like clinically and symptomatically but how are you doing? Tell me how you think things went”. As much as Hopkins may have driven me crazy this past year (you remember months ago…I was ready to fire them all), those who are following my case, they truly share in the setbacks and the successes. Thats important to me.

Anyways, back to the appt itself…We had drawn a lipid panel the week previously, which he was able to review and my lipid panel looks really good at the moment. This is not due to the new heart, but the regimen I was on pre-transplant plus risk factor modification like diet and exercise. I’m on what I can be on right now, Crestor, Repatha and Zetia. Some good news is that we will likely not restart one/two of my medications but we also have to wait a few months to let things kind of trend, before we will discuss adding those back in. My transplant medications affect a lot of things, that can also impact lipids. He is also trying to get virtual cardiac rehab approved, so fingers crossed he can, as in person is not an option during flu season and the pandemic being immune compromised.

In the mean time…I am slowly increasing activity everyday. My neighbors might think I’m a little strange, as somedays I walk laps around our deck for 30 minutes. Other days, we go to an empty parking lot. Other days, I walk up and down our hallway. The goal is to slowly increase to 60 minutes a day in the months to come. If you have your health, find a few minutes to work that little heart of yours. Do that for me. Do that for you.

I find during these walks I like to pray for my donor and their family (among other intentions) and I find myself thinking about them..did they play sports? Did they have siblings? What was their family like? Did they like icecream? What was their favorite color? I even find I talk to my donor sometimes about our heart and share a little about what I hope to now accomplish in the future..will I write that book? Will I meet someone? How will I give back to the world and my community? Dreams that I felt I couldn’t dream before, because life was so unpredictable.

A wise friend of ours put it so beautifully that God had to allow my donor’s work to be completed first on this earth, so that it was the perfect heart for me at the perfect time and I’ll do my best to honor that.

Just wanted to take another moment to say thank you again for everyone’s generosity. To those who made donations, purchased shirts, sent gift-cards, helped pay for prescription refills this week, made grocery drop-offs… thank you. We used some of the donations to pay some medical bills starting to come in, as well as make some reservations for our upcoming visits to Baltimore.

And to those of you who sent an additional giftcard with the note, not to spent it on medical expenses but something that made us smile, please know we did. We have a few tucked away for a day that we need a pick me up but we also used some to download a few kindle books and to order Mom a Mama Bear shirt after she spent two days raising he** with the home health company (lets just say we have a new nurse starting, I should not be telling the nurse which labs were ordered or what color tube to use). There isn’t anything like a mother’s love, but there also isn’t anything like a Mama Bears growl. 🙂

#HopeWins

#BecauseofJesusandadonor

Love, K