Monday, June 23, 2008

Back to Square One

Well, my results came back from the blood tests at the hematologist and I am apparently completely normal.  I don't have a deficiency at all.  This means a few things.  1) I am completely normal and healthy, 2) LabCorp is a bunch of f#%$ ups and they screwed up my tests 3) I have no clue what to do next.  They were going to contact my gynecologist today and give her the results.  I will wait a day or two to see if she calls me.  If not then I will call her and see if there are any more tests to do.  I am really conflicted about this.  On the one hand its great that I don't have any problems, but on the other hand now I have absolutely no answers to the reason for my miscarriages.  It was nice to believe there was a fixable reason and now there is just uncertainty again.  There is a possibility that I will not find an answer.  I'm not sure what we will do then.  I am inclined to try one more time anyway and just see what happens.  It could be that I just had 2 miscarriages for various reasons and the next time will be fine.  I would hate to go through a miscarriage again though.  I'm going to try not to think about it for a few days and hopefully I will feel better if I can talk with my doctor.  This has been a very frustrating experience and I am very unhappy at the moment.

Sunday, June 15, 2008

My Trip to the Hematologist

I finally had my appointment on Friday, but it turned out to be much less productive than I had hoped.  First, the hematologist does not believe my test results.  He explained to me that a person with a typical protein C deficiency would show numbers in the 40-50% range, while normal is over 70%.  My number is less than 1%.  He thinks that is an impossible number and I would most likely be dead if that were true.  He thinks I may really have the deficiency, but someone screwed up the test.  So, they went ahead and drew more blood to redo the test.  The hematologist office is also an oncology office (that's for cancer patients if you weren't sure).  They do the blood draws right in the office.  It was really nice to just walk to another room to get my blood drawn, and it was also really nice to have a real expert draw my blood.  This guy spends all day drawing blood from cancer patients who have difficult veins, so I was very easy in contrast.  It was the best blood draw experience I have had in a long time.  Anyway, the results should be back by the middle of next week.  If I really do have the deficiency then there is no treatment needed currently.  I am perfectly healthy, so I don't need medication or anything.  If I get pregnant I will just do the heparin shots, and I should be fine.  Of course, if his test results come back normal then the first results were really screwed up and I don't have a protein C deficiency after all.  I would be really upset if that's the case, first because LabCorp really f'd up and who knows if they ever get results right.  All my results could be wrong.  Second, if the results are actually normal then I don't have an answer for these miscarriages after all and I am back to square one.  I really liked knowing there was an answer, and I have no clue what we are going to do if this comes back normal.  I'm sure my ob/gyn has some other stuff she might want to test, but I don't know.  If there isn't anything else to test for I'm not sure what we will do.  I don't want to give up on this, but I'm terrified of having another miscarriage.  I'm not going to think about it right now.  I will just wait and see what the results say.  I'm really getting tired of the waiting game though.  My patience has a limit.

Tuesday, June 10, 2008

About that Appointment...Didn't Happen

When I talked to the receptionist at the doctor's office last week she told me my appointment was on Tuesday, June 10th at 1:30pm.  I even had her confirm it again before I hung up to make sure I had the time correct.  Well, on Saturday I got a bunch of paperwork in the mail that I needed to fill out before my appointment.  One of the papers had my appointment information on it and it said my appointment time was 10:00am.  Nice.  I called yesterday in the morning to find out which time was correct.  It was the 10am time.  I'm not sure what the lady I talked to was smoking, but she should quit.  It's affecting her job performance.  Anyway, I stayed late on Monday and got everything squared away at work before I left because I wouldn't be there till the afternoon today.  Then I got home and received a phone call from the doctor's office.  It turns out my doctor was stuck out of town and wouldn't be in the office today.  Just my luck!  It's just one thing after another.  The receptionist then gave me a choice.  She said I could either reschedule my appointment for next Wednesday or get an appointment on Friday afternoon if I go to their other office in North Richland Hills.  For those who don't know where that is, its an extra 20 minute drive for me.  Neither of those options sounded good, but I took the Friday appointment.  I've been really anxious about this appointment anyway and I just want to have it as soon as possible, even if it means an extra drive.  So, my new appointment is this Friday at 1:30pm.  Hopefully it sticks this time.

In other news, I just found out that one of my coworkers is pregnant.  In my entire career with my company there has always been someone pregnant.  Well, we were beginning to wonder who was next because the current pregnant person is in labor as we speak.  I am very happy for my coworker because they have been trying for a while.  It will be her 2nd baby.  She told me she was afraid to tell me because she thought I would be upset.  I understand why she would think that, but I'm not upset at all.  I'm very happy for her!  I did get a bit upset last time someone told me they were pregnant though.  A former coworker came back to visit and told me she was pregnant.  It did hurt, but only because it was an accident and she and her boyfriend weren't even sure they wanted it at first.  Those situations bother me.  Happy couples who want a baby don't bother me at all.  I say yay for them!

Thursday, June 5, 2008

Finally Got an Appointment

I went in to the doctor on Tuesday morning for my blood test and while I was there I filled out the medical release form so I could get my appointment with the hematologist.  I think most people have heard some of my horror stories about having my blood drawn.  If you haven't heard them just know people have a really hard time drawing my blood for some reason, and I always tell them beforehand to use the small needles and be really careful.  First off, they made me wait for 15 minutes because they couldn't figure out what tube to draw my blood in.  Apparently the test I was having done isn't a very common one and the code that was written on the paper wasn't correct.  They tried to call and get the correct code, but my doctor's office wasn't open for phone calls yet, and I guess they couldn't get through to their own help line.  I was only supposed to have one tube of blood drawn, but since they couldn't figure out which tube to draw it into they decided to draw 4 tubes because one of them would probably be correct!  Yay for me!  I always seem to be the interesting case.  At least the lady did it correctly on the first try this time.  I gave her my normal speech before the draw and she told me that she would get it correct on the first try because she was hungry and she didn't want to mess around with me.  I say whatever motivates you to do it right the first time is just fine by me!

So, yesterday I got a phone call from the hematologist's office.  They received my medical records and called to give me my appointment time.  Once again I have to say I love my doctor!  It normally takes 7 to 10 days to get medical records transferred, but she got it done quicker to make sure I could get an appointment as soon as possible.  The receptionist told me my appointment is for next Tuesday at 1:30pm.  I found that pretty funny actually.  She didn't ever ask me if that would work for me.  She just said that was when it was.  Perhaps they are just really busy and that is the only time they could actually get me in.  I'm really glad its so soon.  I was honestly expecting it to take a few weeks.  I'm anxious to get some answers from the doctor after all that I've read on the internet.  I'd like to have some actual expert opinion to refute or corroborate what I've read.  The receptionist told me she was going to call my doctor back and let her know when my appointment is because my doctor is going to discuss my records with the hematologist in person.  I don't know if this is normal practice for her or not, but I am lucky to have a doctor willing to go so far for me.  I will update on Tuesday after my appointment.

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.