Wednesday, October 07, 2009

Up and At 'Em!

8:00 a.m.: This morning is the first in three weeks where I was able to awake to the sound of the 6:10 a.m. alarm and get up on my own power to get Katrina to school. Yes, the mugs of coffee are extremely helpful!


I'm still tired by normal standards, but compared to the flat out exhaustion I've felt for so long, this is wonderful! I've got to remember to pace myself... vision fuzzy -- not good when applying eye makeup :) ...



okay -- it's 10 a.m. and I'd really like a nap right now. But I'm heading back to Kaiser for my second phlebotomy (11 a.m. appt).

3:00 p.m. -- Today's visit was an adventure -- we got a pint of blood in about 50 minutes today, thanks to the aspirin I took this morning. My blood pressure is too high (170/112), so I got to meet with a cardiologist, too. He started me on a diuretic and blood pressure medicine. He believes the high blood pressure is a caused by the blood issues. (I'm probably one of the only overweight people whose BP is ordinarily normal to low).

good news: The hematocrit fell from 69.1 to 63.4 after the first phlebotemy; should fall more after today's blood draw.

Still waiting for more lab results. Next phlebotomy is scheduled for Monday.

How does that song go? "the waiting is the hardest part..."

As I sat there today and saw patients come in for their chemotherapy treatments, I'm reminded to be grateful for all the good things in my life. I am a lucky girl, indeed!

Life is one big adventure!

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!

Friday, March 06, 2009

Middle School Rollercoasters

Living with middle schoolers is like riding a roller coaster. Here's why:

1. You know the ups and downs are coming, but they still manage to upset your stomach.
2. If you don't strap youself in, you'll be in for emotional bumps and bruises.
3. You feel like raising your hands in the air and screaming out loud.
4. Squeals of delight can turn into shrieks of fear for no apparent reason.
5. The person next to you goes from being "cool" to grabbing onto you for protection in a nanosecond.
6. Just when you think everything is level and calm, there is another dive around the corner.
7. You feel a bit off balance when the ride is over, but you'd do it all over again!
8. The ride creates fond memories and funny stories for everyone.

Add your examples here...