Monday, August 12, 2013

Factor V - The Latest Diagnosis

Many of you may remember me mentioning not too long ago that I had come into some information recently that has helped.  In fact this information was briefly given to me in the hospital but I didn't realize its significance at the time or really what it is at all!

While still admitted, my hematologist came in for his normal daily visit. He let me know at the time that I tested positive for Factor V (5).  I looked at him puzzled.  My understanding at this point is that he said it essentially confirmed what we already knew.  I had a DVT (blood clot in my leg, deep vein thrombosis) and it traveled to my lung, creating a PE (blood clot in lung, pulmonary embolism).  Now, one of the things I have recently prided myself in is that I ask questions whenever I have them or am confused.  However, also please keep in mind that while in the hospital, I was usually on some kind(s) of pain medication, as well as on the IV blood thinner, heparin, while taking Coumadin (my oral blood thinner) among other things as needed. I was constantly having my vitals checked and was being monitored as everything leveled out. In other words, FOG. I was out of it... pretty much the whole time.  Hence, why I stared at him and nodded as he left.

Shortly after being released, an old mentor and friend (also a nurse) asked about something called Factor V Leiden. I brushed it off as my hematologist had also noted he was running another test (not sure which one) that should give us information on the origins of my forming clot the day I was released. I wasn't ready to talk openly about future conceiving and whether or not any of this had to do with my miscarriages this year. However, after about a week or so, it started eating away at me. So, I looked it up only to find out there is Factor V and Factor V Leiden, the gene mutation. I read up on it before remembering that my hospital keeps some records online. After finally recovering my sign-in information, I logged on and started looking around. And there it was...

Factor V Leiden... Diagnosis. Now, don't get me wrong. I am no doctor, nurse, EMT etc... but from what I can tell, this is a very important part of my diagnosis. David and I still want kids. We have two beautiful children with whom I never worried during pregnancy about because everything went so well. my ONLY miscarriages have been this year, both recent, both early in the 2nd trimester, a.k.a. LATE miscarriages. RARE! I was a little peeved I wasn't given info (that I know of).  Here's a little (as I understand it).

~ Factor V is a protein that helps form blood clots. When the clot is appropriate, Protein C comes along and tells it to stop.
~ Some of us have a gene mutation, called Factor V Leiden that is resistant to Protein C. What this means is it takes longer to stop the clotting, sometimes creating a larger clot that can be life-threatening. However, in those of us who have the heterozygous version (inheriting from only one parent), most never get one.  (I did!)
~ Those with recurrent miscarriages/losses in pregnancy are often suggested to get tested for clotting disorders and there is an increase in clotting in pregnancy. (In my case, the PE developed, prompting the tests, incl. this one.)
~ Those with the Facotr V Leiden gene mutation that have PEs or DVTs are generally considered high risk in future pregnancies and can help prevent future miscarriages with Lovenox. (Remember those injections I had for the first week?) Lovenox does not cross the placenta so it is safe (instead of Coumadin/Warfarin) in pregnancy.

So, what does this mean for me?

While there is not a guarantee based just on this diagnosis, it is highly likely and suspected that Factor V Leiden played a role in my miscarriages, not only role but likely caused them. There may be more info to all of this as my hematologist is running further tests during and after me being on the Coumadin. Keep in mind how rare back-to-back 2nd trimester miscarriages are (or so I am told by nurses and my doctors). Also, keep in mind that the risk of developing a DVT in pregnancy increases 7-fold with Factor V Leiden.

A little more info...

About 1 in 1,000 people with develop a DVT or PE in a year. However, the odds for someone in their twenties are 1 in 10,000. (I am 28.) WHAT?!

The good news...
Prayerfully, we want to try again down the line for more children. Now that we have at least one piece of the puzzle figured out, my OB confidently says using at least the Lovenox will make this dream much more likely. We have no fertility issues as far as getting pregnant. 

The miraculous news...
As far as David & I are concerned, Joy and Micah are BOTH miracles!! The genetic mutation doesn't always kick in and cause issues. It did but not until recently. Joy & Micah were already blessings but now we realize how fortunate we are to have them both here. I had practically flawless pregnancies and deliveries with them before we ever found out about any of this.

Future pregnancies (prayerfully) will be approached much more cautiously and differently and we feel blessed to have any info at all. I would not be surprised if we find out more from other tests as well. Or, it might be that the rest of the year is fairly uneventful. I have met many women who have no real answers to why they miscarried or were as fortunate as I was to get a PE diagnosed so soon! God has literally saved me!

~ Side note: Forgive any weird breaks or confusion in this one. I am still learning about it and how to explain it. I have also had a pretty rough day physically and am in the process of getting the kiddos ready for and into bed here shortly and it is not going well. Planning on taking pain medication soon as well. ~

I hope this helps some for those of you following our story.  We are not trying to conceive for at least 6 months during my initial recovery of the P.E. From there it will depend and we hope to just follow God's Will as best as we can. I am thrilled for what may be but am truly so focused on my 2 beautiful blessings of children, as well as the life God wants me to have. I can only imagine what the future holds.

Have a beautiful evening,
  That's all for now...
    *Melis*

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