Guinea Pig?
March 20, 2008, 7:59 pm
Filed under: daily | Tags: , ,

As I’ve said before, I have Von Willebrand’s Disease. A bleeding disorder. Blah blah.

The clinic in Pittsburgh is affiliated, somewhat, with UPMC, which owns all of Western PA. UPMC is affiliated with Pitt (GO PITT! BIG EAST CHAMPS! BEAT ORAL ROBERTS TODAY!…… What the hell kind of college is ORAL ROBERTS?), which is a major research university. So…. this clinic does research.

And they want me to participate in the research!

Now, because I am a biology major, I have a weakness for science. And research studies. And I know how difficult it is to find appropriate subjects. And how important it is. So I have a hard time saying no.

But this study is a drug study. They want to see if a drug, rhIL-11, also known as Neumega, can provide the same protection against bleeding episodes, specifically menorrhagia, that does not respond to DDAVP or other treatments, that it provides to chemotherapy patients. Basically, I am the perfect candidate. I have menorrhagia (look it up!) that does not respond to DDAVP. They have me on birth control, which cut my “episodes” from 12 days to 6 days. But I still have heavy “episodes” and they are still unpleasant and draining (haha!). Also, I’m specifically low in another protein besides the von willebrand’s factor, which makes me super good for the study.


Did you click on that link? Did you? Because the drug they want to give me? It’s a chemotherapy drug. Granted, its used to try to alleviate the side-effects of the chemotherapy, specifically low blood cell count and bleeding problems. But still. Heavy duty stuff. More importantly, they want me to give myself injections every day for a week every month, for 6 months. And keep diaries of my “episodes”. Plus an initial week of receiving it every day in an IV at the hospital. Plus monthly blood draws.

PLUS! I’m not allowed to get pregnant during the study. Damn. Oh, just kidding.

They also want to pay me $300. I was kind of hoping for more, because thats a substantial time commitment. Oh, and I’m poor. However, if they were paying more, it would imply that there were greater dangers related to this drug. As of now, the only concern is related to heart disease (not only do I not have heart disease, but nobody in my family does. In fact, we’re more inclined to have low blood pressure than anything).

I’m going to read over this over the weekend, discuss it with the medical people in Bear’s family, and with my family. Then I will make my decision.

I’m a little hesitant, what with the having to give myself shots in the ass for 6 months. But, research is a cause near and dear to my heart. If giving myself shots in the ass for 6 months means we’ve found a new way to treat this irritating disease, I’m all for it. I mean, yea, menorrhagia is a pain in the butt. Plenty of people deal with it. Why would I deal with giving myself shots in order to deal with something so minor? Here’s why. The amount of blood I lose every month is pretty substantial. I already have clotting issues, so during that period of time and immediately after, I have even greater issues just due to the decreased amount of blood. During that time, when I misjudge my edges and run into stuff like coffee tables and doorways, I get pretty awful bruises. I also am exceptionally tired and lethargic and even paler than usual. It’s not really good. If I were to have a serious accident, it could be a serious problem. By finding a way of treating this issue, I could improve my blood factor levels and improve my symptoms of the disease. It would be safer for me.

Besides, if I decide not to do it because $300 isn’t as much as I’d like, it’s still $300 I won’t have. So. Hm.

Any opinions? Should I participate?


February 27, 2008, 10:11 am
Filed under: daily | Tags: , ,

Genetically speaking, I’m a screw up. I have a bleeding disorder, called Von Willebrand’s Disease. It is a minor inconvenience more than anything. Essentially, I do not clot appropriately. I am a slow clotter. A retarded clotter. My blood just needs a little more time to get the hang of it. Clearly, it could not be that life-altering because I wasn’t diagnosed until I was 16. Of course, I was generally a sloth-like child, and preferred spending my time curled up in a corner reading than doing anything that would injure me, so that made it easy to miss. Officially, it is a genetic disease. I have one copy of the screwy gene, and since it is a dominant disorder, I have it. Oddly, neither of my parents have it. I am proof that genetic mistakes DO happen and they DO alter the genetic line. I have a 50% chance of passing it on to my children.

Bear has type 1 diabetes.  He has a 4-6% chance of passing it onto his children. Actually, type 2 diabetes has a higher genetic link than type 1. Part of this is because type 2 is part of an overall metabolic syndrome: obesity, sedentary lifestyle, heart disease, high blood pressure, high cholesterol, and type 2 diabetes tend to be very closely associated with each other. One is genetically predisposed to eating a certain way, retaining a certain amount of weight, not exercising enough, so it tends to appear in families. Of course, one can come from a family with this metabolic syndrome and work hard to avoid it. Bear’s family is wrought with the metabolic syndrome, but he will probably avoid it since he’s been working hard to manage his eating, exercise and health from an early age.

However, type 1 is not the same thing. It is not related to lifestyle. They don’t really know how it works, yet. It is probably an autoimmune disorder, where his body specifically decided to kill off his insulin producing cells. Unfortunately, the spectrum of autoimmune disorders (rheumatoid arthritis, Crohn’s, lupus, etc) are not really well-understood. What causes the body to decide to attack itself? Why does it attack what it attacks in a given patient? Until we understand those questions, we can only treat the symptoms of each separate disease. I predict that eventually, we’ll be treating them as the same disease with a spectrum of symptoms.

Bear is the only one in his very large family to ever develop type 1. Many people have type 2, but he is the only type 1. He was diagnosed right before he started kindergarten, and has been taking meticulous care of it ever since.  We both say that if the worst thing that happens to us is these diseases, we’re lucky people. My bleeding disorder just makes being female a little extra exciting, and could make childbirth more complicated. I’m also more likely to have problems from a moderate injury that normal bleeders would be ok. A severe injury will be a problem for anyone. I also can’t give blood, because really? What good would that do to the person I gave it to? No good, that’s what.  Bear was lucky enough to be born and develop diabetes right around the time that technology and understanding of the disease were exploding. He had high quality insulin, he’s been on an insulin pump (extremely fine control) for 8 years, and he is on drugs that protect his kidneys from potential high blood pressure that comes with the disease. He is in excellent health, especially considering that he has a serious disease. The slightest issue with his insulin, as I found out over Christmas break, can land him in the hospital, but those situations are few and far between.

These are the things that I tell myself, because when I really think about it, the fact that I am a Bleeder, and he is a diabetic, and we’re going to have babies… that really scares the everliving daylights out of me.  We have a 2-3% chance of having a child with both diseases. A bleeding diabetic, now wouldn’t that be fun? I am more accepting of having a Von Willebrand’s child, because I know how easy it is to deal with it. Of course, having children with a person like Bear means I will probably have active babies who do things like figure out how to open their cribs and fall head first out of them (his nephews), or want a cookie so bad that they rock their high chair across the kitchen floor and then tip it over and break both wrists (Bear).

Having a child with diabetes is scarier. Marrying a diabetic is terrifying. Especially when I talk to a good friend of mine and find out that her older sister, a type 1 diabetic, recently died of it. Granted, she did not take appropriate care of herself at all. She was also born about 15 years before Bear, and just missed the massive leaps in treatment quality. Regardless, to know she died of kidney failure in her 30’s, blind and wasted away, is terrifying.

But I know, that no matter what, it doesn’t matter what my children have. Every pregnancy has a 2% chance of having something, anything, wrong with it, from massive developmental defects that result in extremely early miscarriages, to Down syndrome to genetic diseases to congenital birth defects. That means that the 4-6% chance of having a child with diabetes is not that much higher than the risk everyone takes when they choose to have a baby.

When you hang your hat on a statistic, you better look at the statistic from both sides. We say we’re lucky, because we are. Even if many people would consider a bleeding disorder and diabetes in one couple the opposite of good luck. I might be scared, but I’m still lucky. That’s what I have to tell myself. Thinking anything else would just be too hard.