Category Archives: Polycythemia Vera (PV)

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 »

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 »

These Tired Bones Need a Makeover

After several days of tests and consultations with experts at Mayo Clinic Scottsdale, I returned home with a worse-than-expected diagnosis. Here’s the quickie Bad News/Good News version:My bone marrow has gone from over-achievement to under-achievement. Instead of producing too many red blood cells, it is now in the “spent phase” and is not producing enough… Read More »

Yippee! It’s Time for Another BMB

I never thought I would look forward to getting another bone marrow biopsy & aspiration, but today I am eager for new information.  The first BMB was done in March, 2010.  It will be interesting to see how my busy bone marrow has changed in almost 3 years. Why a BMB Now?In 2012, the first few… Read More »

MPNs Gain Attention of Hematologists

In case you haven’t heard, hundreds and hundreds of hematologists gathered in Atlanta, Georgia for the 2012 ASH (American Society of Hematology) conference this past week.Until I was diagnosed with Polycythemia Vera, I had no inkling how complicated our blood is.  I also didn’t realize how much ‘we’ (including the medical and scientific communities) don’t… Read More »

Let’s Play Medical Pinball!

Apparently, I’m a slow learner.  I believe that when things/people/events show up in one’s life they present opportunities for introspection, learning and growth.  Sometimes it’s to practice patience, listen better, explore other perspectives, remember to be grateful. The latest “opportunity” in my life is arthritis and chronic pain.  I’ve been dealing with increasingly frequent and more… Read More »

URL Pharma Price-Gouging of Colcrys Is a Pain in the Foot

When I had my first gout attacks as a result of my Polycythemia Vera, the doctor prescribed colchicine to provide relief.  Colchicine is a generic drug that is 1,500 years old (it comes from the seeds of the autumn crocus) and was used by the ancient Egyptians and others to reduce inflammation and other pains.… Read More »