Category Archives: Myelofibrosis (MF)

Translational Research: From the Lab to the Clinic

I had the coolest field trip today. I visited the Mullally lab, an independent research lab at Brigham and Women’s Hospital, Department of Hematology, with Harvard Medical School. It is a translational hematology research lab. Dr. Ann Mullally and her team of impressive scientists test theories to answer some of the pesky questions people living… Read More »

Hope = Reasonable Expectations

Six Month Post-SCT Assessment Gives Me Hope February 3, 2014:  The news is good. My Dear Donor’s hematapoietic (blood forming) stem cells are engrafted in my bones. My bone marrow is not hard and fibrotic like it was six months ago. We hope it once again becomes a gracious host for the marrow and stem… Read More »

Some Life Lessons Take a Lifetime

Patience and Pacing If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will come to an end. ~ Ajahn Chah, A Still… Read More »

STEM CELL TRANSPLANT STEP 1: MEDICAL EVALUATION

DONOR NEWS!! I learned this week that my life saving blood stem cell donor is a 22 year old man who lives outside the United States. He has agreed to the stem cell collection schedule my doctor proposed. How cool is that?! Young, healthy stem cells ~ it doesn’t get any better.  As a patient,… Read More »

Jakafi to the Rescue

Myelofibrosis Treatment Banishes Behcet’s… Coincidence? I think Not About one month after my Autumn 2009 PV (polycythemia vera) diagnosis, I started getting unexplainable lesions in most inconvenient locations (I’ve shared this over a year ago). After several months of excluding many possibilities, it was diagnosed as “Behcet’s Disease/Syndrome” or “Probably Behcet’s” in March, 2010.  I… Read More »

I Blame the Hemoglobin

There seems to be an inverse relationship between my Hemoglobin level and Anxiety level. Hemoglobin is a protein in the red blood cell that carries oxygen through the body. As the hemoglobin decreases, I become more easily annoyed — with myself and everyone around me. I get the anemia double-whammy from the alpha thalassemia trait (red cells are… Read More »

Beating the Odds Starts with a Swab

When I began this journey 3 months ago, I was pretty confident that one of my four siblings would be my match (a 10 for 10 match of HLA-types; it’s not about matching blood type).  Each had a 25% chance, so wouldn’t 1 of the 4 have to match?   That’s not how probabilities work, I learned. … Read More »

Blood Stem Cell Transplants in the 21st Century

When I first heard about bone marrow transplants, I envisioned the donor getting drilled in the hips for bone marrow extraction (like the bone marrow biopsy and aspiration) and then a surgeon drilling into my large bones to implant the donor marrow. I am happy to say that I was way wrong!In most cases, blood… Read More »