Monday, June 2, 2008

But Wait! There's More!

So, the day after I talked to my doctor I called the hematologist office to schedule an appointment, but they wouldn't let me schedule one until they have my medical records.  I called my doctor's office to get the records transferred and was told I need to come in to fill out a release form and then it would take 7 to 10 days.  So, this could take a while.  Then, about 5 minutes after I hung up with the doctor's office they called back to give me more test results.  This time it was the dumb nurse, not my doctor.  She told me that in addition to the protein C deficiency I also have a genetic mutation where I received 2 ineffective copies of the MTHFR gene.  This leads to higher than normal homocysteine levels in my blood and a reduced ability to absorb folic acid.  It can be serious, but is apparently easily controlled with high doses of folic acid and B12.  First they have to check my homocysteine levels though.  This involves a fasting blood test.  Yay for me!  I just love to have my blood drawn.  I am going in first thing tomorrow to get the blood work done and fill out the paper work to release my medical records.  Hopefully I will have an appointment with the hematologist by the end of next week.  In the mean time I have been doing some of my own internet research on my issues.  First off I am very frustrated at the amount of scientific papers on the subject that I can't read!  I get all these links to abstracts, but I can't access them without a subscription.  I think I can still get access through my old University of Florida school days, but I don't have a password anymore.  I may need to look into getting one.  Most of the stuff I came across were message boards talking about the subject.  There definitely seems to be a lot of women out there with this problem and daily (or twice daily) heparin injections seem to be the standard course of treatment.  I haven't read any bad things about doing the injections, except for the pain and bruising from the injections.  Everyone seems to have perfectly healthy babies after suffering varying numbers of miscarriages.  The heparin really seems to do the trick.  I am very hopeful, but will still wait and see what the hematologist says.  Stay tuned!  I will try and keep things updated as I learn more.  It's very interesting to me that we started this website a year ago with the intention that our "journey" would be quick and easy.  It has since turned into much more than anticipated.  Perhaps there is a reason for it.  Hopefully this site can be of some help or comfort to other people out there.  I'm sure it will all work out in the end, and we are stronger and smarter for having gone through it all.

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