Happy Heart Day/Rock the Red Day y’all! ❤️

It’s the annual day to rock the red today, in honor of women’s heart health! I thought it would be a perfect day for an update!

Now that we’ve made it through the 1072 days of January, we are officially in heart month. I can’t believe this year is 10 years since all my heart stuff began, and 5 years this fall since my transplant.

It’s been a tough road and one that has required resilience, strength, grit and a whole lot of grace. A lot has happened recently so thought I would share:

🫀Cardiology: my heart is overall doing well. I continue to not show any signs of rejection. In 2024, a lot of time was spent with multiple doctors figuring out the sweet spot on meds and fluids, to keep me out of active heart failure flares. I will always have heart failure, we just sometimes see it flare up requiring a Hospital stay to manage.

Praise: we have me on the lowest doses of cardiac meds possible, and things are stable.

Prayer: my heart remains stable, and hopefully some meds can be discontinued.

Neuro: oh my little noggin. Unfortunately, my migraines have changed their pattern and increased in frequency, requiring a lot of ER trips in the past few months. My neurologist is also concerned because some symptoms mimic a seizure and my EEG did not come back clear. He wanted to repeat it in 3 months, and that’s this week.

Praise: a neurologist that listens!

Prayer: we find the root of my change in migraines and that my EEG is clear.

Endo: my sugars are doing better, still not great, but better. We restarted Monjauro and my body is tolerating it much better than the first time. This helps my body be less insulin resistant, require less insulin, and I’ve begun to lose more weight. I still have about 30 more pounds of transplant/prednisone induced weight loss to go, but I’ve already lost 60, so we are making progress.

Praise: better sugar control, tolerating monjauro

Prayer: continued success with weight loss.

Nephrology:

The real divas for the last 5 years, my kidneys. They still are cranky little things and my baseline creatinine has worsened by a whole point, but my nephrologist has kept them there. We are still looking at a transplant, but the timeline has been extended some. I do labs every month for his review and see him every 3 months, with the phone in and I’ll get you in option available.

Praise: finally finding the most outstanding nephrology doc.

Prayer: that my kidney function would not worsen.

PCP: my primary care doctor has followed me for 10 years and she deserves all the praise and gold medals. She gets everyone’s notes and has to make sense of them. Lately, we are monitoring my thyroid function, which has decided to get worse and my anemia, which has remained in the almost need a blood transfusion range for months. We are now beginning a weekly injection, to stimulate red blood cells. I often experience shortness of breath, because anemia means you lack oxygen in your blood. The hope is this injection will help my anemia and I can feel better.

She also gets the fun of figuring out what latest illness I caught and how to treat it. We both love that I have no immune system. I currently have strep, but the less common strain, because why not?

Prayer: a period of stability

Praise: having a doctor who knows you, sees you and hears you.

The start of 2025 has been a doozy, I’ve had a different virus every week. But ultimately, we are seeing improvements in my health, even in the areas not mentioned. It has become more manageable, overall. On the tougher days, I listen to my body and slow down, and on the good days, I do something I enjoy.

I’ve had my donor on my mind a lot lately and I find myself thanking he/she for the opportunity to experience new things. It hasn’t been the easiest road, and when we selected Hope Wins as our mantra post transplant, we never knew the twists and turns life would take. I’d do it all over in a heartbeat (pun intended) just to experience life again.

If you aren’t an organ donor, I’d encourage you to become one. Or if you can donate blood, I’d encourage you to donate and save a life. For everyone in need is someone’s child, friend, cousin, special person.

And when you get the opportunity to live life, live it. Book the trip. Call your friend. Flirt with your crush. Forgive those who hurt you. Try something new. That’s when Hope Wins.