Saturday, October 10, 2009

Polycythemia Vera

So, what is a Myeloproliferative Disorder? Wikipedia says they are a group of diseases in the bone marrow where excess cells are produced. In my case, I had been diagnosed with Polycythemia Vera. Poly-sy-theme-ee-uh Vera. Since I found myself with a lot of time on my hands and not a lot of energy, I had the opportunity to get to know my disease quite well by looking all over the Internet for information on it.

PV causes my red blood cells to multiply really, really fast, causing my blood to get too thick and raise the risk of clots, stroke and heart attack. I already knew that last part, after being hospitilized from my own stroke and two blood clots in the brain. So perhaps it was less scary for me than for someone who hasn't gone through those things but was still at high risk for it.

It is most common in men over 60, but I have been in touch with others who are younger, some in their teens, who have the same diagnosis. Knowing this, I also found that the average lifespan after getting diagnosed and treated is 10-20 years. Now I know this is nothing to be alarmed about. Just think, if on average you get diagnosed at 60, then another 10-20 years after that is pretty normal. I don't see any reason for my lifespan to be any less than normal either. But I do understand how it looks scary if you don't put those two facts together.

I know that when I was first brought into the hospital I had a high count of red blood cells, as well as platelets and white blood cells. This is pretty common with PV as well. The Hydrea I was taking was to lower the counts of all these cells. I also take blood thinners to keep my blood 2-3 times thinner than an average person's, and an Asprin a day to make the blood less sticky.

I have a team of doctors who keep an eye on my results. My family doc in the next town over, a neurologist in a town an hour away where I go for MRI's, and a Hematologist in Winnipeg who is awesome and spends all the time I need to get my questions answered. He referred me recently to a High-Risk pregnancy doctor so I can get an idea of when, eventually, having a child might be possible. At this point I will probably be waiting another 4-6 months before any progress is made about THAT!

My doctors are great, so far they have all been really easy to get along with and knowledgable about my disease. I think I've been pretty lucky so far that the doctors and I are on the same page when it comes to treatment.

At first, I was not allowed to get a lot of activity, and had to take it slow so I didn't overexert myself. It was pretty disappointing to walk up the stairs and be out of breath, or be walking in a store and have to slow down or sit because of the fatigue. But after another month or so I was allowed to try to get back in shape, and basically started from scratch to get stronger and have more energy to move around.

In the spring, I think it was March or April, I got a casual job at the daycare in town, and worked once or twice a week. It was great, I still work there and just have so much fun playing with all the kids and pushing them on the swing. I know that working there has done a lot for my strength and endurance. It has, however, shown me how poor my immune system was on those pills, because after an 8-hour shift I'd end up sick with no voice for a week!

Another side effect of the pills I was taking was that with blood thinners, you usually get poor circulation, so my hands, feet and even nose would constantly fall asleep. I was fortunate though that I didn't get itchy legs after taking a hot shower, which is really common with PV. So I considered myself lucky to only have the symptoms I did have, which were improving as my body adjusted to the medication.

So I looked forward to a healthier summer, getting my strength back and getting used to living with a blood disorder.

1 comment:

Tom Parker said...

There is a Google group called MPDchat. If you have not done so, you should join that.