Thursday, October 18, 2007

It's Not Fair

The doctor's office called today with the results of the children's Factor V Leiden blood tests. T. is negative, but my sweet K., who loves babies more than anything and wants to have ten of her own someday, is positive. I could weep.

8 comments:

Myrtle Hocklemeier said...

I don't know about this blood test. Is this related to Ed?

My oldest's paternal grandfather has a form of genetic alzheimers that has a 50% of being inherited by each offspring. That means B has a 1 in 4 chance of it.

During the times when I'm having a lot of physical symptoms, joint pain, numbness in arms and legs I think about how brave your Ed is. They still have not diagnosed me and I've been to several doctors already.

Melora said...

Myrtle,
Actually, this is a blood clotting disorder that she gets from my side of the family. (Although, I suppose it Could be on Ed's side too, in which case she would have the more serious version. We will find out more when she sees the hematologist.)

Are you going to have your kids tested for the Alzheimers? I had a hard time deciding whether to have my kids tested, but finally decided that the benefits of being able to take precautions outweighed the risk that they won't be able to buy health or life insurance.

I hope they figure out what is wrong with you soon. Serious symptoms with no diagnosis are so frustrating and alarming. Ed was almost relieved when they found his spinal cord tumor, because at least the doctors stopped telling him that he was imagining the pain, and then again when they found the arachnoiditis, because it meant the tumor wasn't growing back (at least not quickly) and explained the continued pain.

Myrtle Hocklemeier said...

My oldest son is by a previous marriage and so he's the only one with a known risk. Since there is no known cure for Alzheimer's I'll talk to him about it when he's a teenager and the decision will be his.

Dy said...

Oh, Melora, {{{hugs}}}. What precautions can she take during her life? How will this affect her future? Obviously, it's time for me to go educate myself on Factor V. I'm sorry, honey. I know this wasn't what you were hoping to hear.
dy

Melora said...

Dy,
Actually, unless she needs surgery or becomes immobilized for some other reason, it shouldn't be an issue for a while. Once she is of an age to think about having babies, she will need to consider it. She shouldn't use pills, patches, or any other form of hormone altering birth control. Smoking would be a big mistake (of course, this goes for everyone, but the Factor V makes it a bigger deal). And while she is pregnant, she will probably need to be on blood thinners. Which are phenominally expensive, and she will probably have a very hard time buying insurance with this on her records.

Jennifer F. said...

Oh, Melora, I'm so sorry to hear that. If it helps at all, I just got new insurance when I was already pregnant and I did disclose that I'm homozygous for Factor II (which is evidently worse than if I were heterozygous and just got it from one parent). Also, there may be some alternatives to Lovenox that aren't so insanely expensive, my hematologist was working with me on that back when I had insurance that didn't cover Lovenox.

Anyway, just wanted to say that I'm really sorry to hear that. I haven't decided about getting my children tested either, but I probably will. Thanks for sharing.

andie said...

Oh, Melora. I'm so sorry. ((()))'s

Melora said...

Jennifer,
I'm very glad to hear that you were able to buy insurance with the Factor II in your records. Maybe that part isn't as impossible as I thought. Also glad to hear that there might be a less expensive alternative to Lovenox. That stuff was priced like gold (maybe higher!) when I was pregnant with K.

Andie,
Thanks!