Tuesday, October 06, 2009

Leeches, anyone?

Today, I was phlebotomized.
I was so relieved when nurse Charlotte presented me with a clean needle instead of a bucket of leeches!

Two years after an unexpected and frightening surgery, I am back in the learning mode about blood. I've been taking warfarin (aka Coumadin) since October, 2007. After mesentary venous thrombosis and intestinal ischemia, the incredible Dr. David Brodeur tested and determined that my blood has Factor XII and Protein C deficiencies. These indicate that my blood likes to clot (hyper-coagulable); hence, the warfarin, which is a blood thinner.

[interesting factoid: warfarin is also known as rat poison. when rats eat the warfarin placed in bait, it causes them to bleed internally until they die -- pleasant thought, ehh?]

Today, for reasons unknown at this time, my bone marrow is producing too many red blood cells (RBCs) and they are too thick, creating a clotting risk. While I thought the warfarin protected me from all blood clots, I learned today that the drug affects the platelets, not the RBCs.

In researching (beyond Google) blood disorders, I found little helpful information from the patient perspective for the blood disorders that I manage. Those include alpha thalassemia trait, Factor XII and Protein C deficiencies, and way too many red blood cells (which could prove to be polycythemia vera).

Polycythemia vera is quite treatable, though not curable.

I’m working with a hematologist and we are awaiting results from blood drawn yesterday and today.
(I had to go back in today because the blood collected yesterday was so thick that they couldn’t get enough serum from the spinning they do).

Because the numbers were too high on the test results that did come back, I was “phlebotomized” this afternoon. They removed 1 pint (500 mL) of blood – it took more than an hour to get that out (should normally take 20-30 minutes). After removing the blood, they ran more tests.

Tomorrow, I will be phlebotomized again, followed by more tests. Maybe another round on Thursday or Friday, depending on how well the hematocrit falls. The objective is to get the hematocrit level down from 69 to 45-50.

We knew that my body was producing higher than normal RBCs and that they are irregular in shape (that’s the alpha thalassemia trait). But the numbers have increased a lot over the last few weeks which has caused other problems.

The hematologist is testing to confirm whether I have the condition called Polycythemia Vera. http://www.mayoclinic.com/health/polycythemia-vera/DS00919

It could be another week before the specialty test results are back. She will most likely send me to Emory for a bone marrow test as well. [Remember that our blood is made by the bone marrow – and mine seems to have gone a little wild with the RBC production].

I must say that I feel better emotionally that we are close to nailing a medical reason for the chronic fatigue, dizzy spells, etc. that have kept me off my “A” game for the past month and a half. (I knew something was wrong when my 2 mugs of coffee in the morning had no measureable impact on me).

I am going to share the journey and the information I discover, in hopes that others can benefit and also contribute their information for a broader learning experience for us all.

Every day is an adventure!

1 comment:

Michelle Woehrle said...

You can find information on Polycythemia Vera and Myeloproliferative Disorders in general at mpdfoundation.org. Best of luck!

Michelle Woehrle
Director of Administration
MPD Foundation