Friday, December 7, 2007

The Internet Saved My Baby

Sounds like something that should be on the cover of a tabloid magazine, right? Well in my case .. it may very well be true. Although I should clarify - the baby I'm referring to doesn't exist yet. But he/she might never exist if not for the gentle urging of a group of very informed women on the Trouble TTC board I frequent.

Here's how the internet saved my future baby:

In late October 2007 - I started bleeding the same day I got a BFP. It was a Friday - my RE's office said they couldn't bring me in for a beta until Monday. The same nurse who said they couldn't bring me in for a BFP also suggested the positive I was seeing could just be traces of the trigger shot I had 15 days earlier. Which made me really angry. Most 10,000IU HCG trigger shots are "out" within 10 days. Anyway - I had tested three times earlier in the week - all negative. It WASN'T the trigger.

At the urging of the women on my T-TTC board - I went to a walk-in medi-clinic that day and got a blood test. The result was a positive HCG of 32.1. I kept bleeding and by Monday the results of another beta were negative. It was an early m/c. I wouldn't have been sure of that (nor would my RE) if this board had not urged me to go get the blood test (the results of which were faxed to my RE.)

On that same Monday, after my negative beta the nurse at my RE's office said if it happened again - my RE might want to do further testing - but not now. That didn't sound right to me. Again? No thank you. I've had two other miscarriages in my lifetime (and TOLD her that) - this most recent chemical pregnancy was #3. So - I called the appointment desk folks and made an appointment with my RE. When I saw him - three weeks later - he agreed with me that this was not a good sign - and ordered RPL (recurrent pregnancy loss) bloodwork. While I was glad he ordered the bloodwork .. I felt sure that everything would come back "normal". I had it in my head that my three losses were coincidences or bad luck. One of them, at age 28, was "unconfirmed" - I had a positive pregnancy test after being 11 days late - started bleeding a few days later - went to the hospital where the blood test that gave me = negative. For years I thought it was a "false" positive - until I learned about chemical pregnancies. My first miscarriage happened when I was a scared teenager at approximately 10 weeks gestation. Because they were so spread apart - and because I was the one "pushing" for additional testing - I thought the results would be normal. Surely - if something was possibly wrong - the nurse and the doctor would have been adamant about me getting tested right away ... right?

Well - I got some of those results back today.

It appears I have two .. not one .. but TWO blood clotting disorders that are linked to recurrent pregnancy loss (hence - the reason they are included on a recurrent pregnancy loss panel of tests!) The disorders are Factor V Leiden and MTHFR. I tested positive for one copy of the the R506Q (Factor V Leiden) mutation in the Factor V gene. I tested positive for two copies of the C677T gene mutation as far as the MTHFR. I don't know a lot about these disorders yet ... but I will by the end of the weekend, let me assure you!

My RE is sending me to see a hematologist next week. I'll know more about specific treatment after that. Right now - I know daily baby aspirin, LOTS of folic acid, and an injectable drug called Lovenox are probably in my future. My near future.

The good news is - I also had a sono-hysterogram today and it went fine - my uterus is in great shape - no trace of the septum that was removed last March. That was a big relief. I was worried that perhaps there was some unknown complication left over from the surgery.

But the clotting disorders ... that really caught me off guard. In addition to pregnancy loss - there are other associated problems and bad pregnancy outcomes (preeclampsia, stillbirth - a host of issues.)

If I hadn't pushed, if I hadn't spoken up - chances are, if I got pregnant again - I would have had a fourth miscarriage. Because the women on my internet TTTC board pushed me to get tested - I can now get treated - and if I am able to get pregnant again - I should have a much better chance of STAYING pregnant too.

If you have ever wondered if you should speak up, or get a second opinion, or ask questions - I hope my story inspires you to do so. That - coupled with the fact that it wasn't until I sought a second opinion (from my current RE) I wouldn't have had a laparoscopy during which mild endometriosis was discovered, nor would I have had the hysteroscopy during which my uterine septum was discovered and removed. My first RE would've just put me on clomid (a drug that my current RE, the second opinion guy, thinks would have been very bad for me.)

So .. yeah .. thanks to the girls who insisted I go get a blood test on the day I tested positive at home - and who urged me to get further testing after chemical pregnancy was confirmed - I have a better chance of STAYING pregnant and delivering a healthy baby - if we can get me pregnant again.

I feel like that WILL happen. I hope I am right.

You always hear you have to be your own advocate when it comes to your health - and it seems like just one of those things you always hear. But ... it's true. Who says you can't believe anything you read on the internet? You can believe my story. I wouldn't have pushed - if the girls on the internet hadn't pushed me. So -- they really may have saved my baby.

Speak up for yourself ladies (and gentlemen.) I'm glad I did.


tbonegrl said...

I'm so glad you have another pice to the puzzle!

Hope said...

Wow, we sound like we are currently in similar places. I just suffered my 2nd loss in October and am having a sono-hsg on Tues. I am a having a RPL panel in january to determine, if clotting issues are the root of the problem. Thinking about you and thanks for getting information about these seldom discussed infertility problems.

Anonymous said...

I guess I'm fortunate that I haven't gone through a recognizable miscarriage, but I am really sad that for the approx. 84th time, I started my period. I got married 7 years ago and we have never used protection, feeling that what happens should happen, well, nothing ever happened, except a couple of very late, very heavy periods. The meth-head on the corner has had two children that she can't and won't care for,hopefully they are being cared for properly by someone, I haven't seen either one in a long time, but what's wrong with me? I don't claim my existence hinges on pro-creation, but all I'm doing is trying and nothing ever happens. Is this because I was careful as a youngster, took the pill, believed in planned pregnancy. I have been open to this for seven years, and it makes me cry today, that it won't happen for me.

JD said...

I just want to say how thankful I am to have found your blog through the Nest (I'm PennyLane06 on the Central PA local board). I too have recently been diagnosed with FVL following the finding of a blood clot in my lower leg. My DH and I were planning to start TTC in Jan 09. Those plans are on hold until my clot is dealt with but I feel fortunate to know about my clotting disorder going into it. I can't tell you how happy I am to read your blog and see how well you are doing with the lovenox injections. I was terrified when I read about all the complications FVL causes with pregnancy. I look forward to reading the rest of your journey. Best of everything to you and your family!