The Season of Waiting

I’ve been in a holding pattern lately, and if I’m honest, it has been a season that requires every ounce of my faith. As many of you know, navigating Primary Myelofibrosis is a journey through a mountain of data, clinical tests, and hurdles. Right now, I’m focused on getting over a persistent two-week bug so I can finally start a new medication called Ojjaara. While the drained feeling is heavy, I am constantly reminded that my strength doesn’t come from my own reserves, but from a much higher source.

The Blueprint and the Burden

We recently got a lot of data back from my transplant workup. The medical facts confirm what I’ve been feeling: my bone marrow is in an overt fibrotic state with Grade 3 scarring. My spleen has grown to 17.8 cm as it tries to do the work my marrow can no longer manage. It’s why my heart feels like it’s thumping in my ears and why I feel so weak.

We also found some specific genetic markers, HLA-B*57:01 and HLA-A*31:01, that act as permanent red flags for certain medications. While these results tell the story of my physical body, they aren’t the final word on my future. I’m leaning into the truth that I am “fearfully and wonderfully made,” even in the middle of this complex biological storm.

Navigating the “Noisy” Immune System

One of the more challenging updates was a “cPRA” score of 70%. In the transplant world, this means my immune system is on high alert, making it harder to find a perfect donor match. My doctors believe this is inflammatory noise that my system is so revved up by the Myelofibrosis that it’s struggling to recognize what is a friend and what is a foe.

Finding my “needle in a haystack” donor might seem like a mathematical impossibility to some, but I know that the right match is already out there. It’s not about the odds; it’s about the timing and the plan that is already in motion for my life.

Advocating with Peace

I have an important appointment coming up on April 17th. I’ll be open with you, I’ve felt a bit dismissed in recent meetings. It’s easy for the medical system to look at a score or a number and lose sight of the person. I am heading into this next meeting with a clear voice and a peaceful heart, pushing for:

1. A Physician Change: Moving my care to a doctor I trust implicitly; someone who sees the person, not just the pathology.

2. Support for My Strength: Addressing my low Calcium and Vitamin D levels through IV help so I can be physically ready for what’s ahead.

3. The Next Step: Starting the “bridge” medication to help shrink my spleen and get my blood counts where they need to be.

Standing Firm

The good news is that my heart is strong and my lungs are healthy. The factory inside my bones might be scarred, but the rest of the temple is standing firm.

I am choosing to believe that every delay is a protection and every test is a testimony in the making. Thank you for your prayers and for walking this path of faith with me. I know that the Great Physician has the final say, and I am resting in that tonight.