Wednesday, April 1, 2015

Life With/Life Without Factor 5 Leiden

This title for this topic is a misnomer of sorts. It could easily be titled  "Blissful Ignorance/Life With FVL" as it is something I was born with, yet had no clue until I was 28 and in the hospital after a pulmonary embolism, less than a decade after having had a stroke. Out of convenience, I will just refer to it by it's little nickname of FVL.

When I was in the ER, the doctor that was called in knew right away that something wasn't right. A stroke and a pulmonary embolism before 30 didn't happen to "normal" people. So, by the time I was rolled up to the ICU, there was a lab tech waiting on me. I may have been on all the morphine I could take, but I still counted the vials as the tech filled them. 

"Are you going to leave any for me? You just took 14 VIALS" I said to him. He laughingly called to the nurses station that I needed more morphine, because I could still count. I tried to laugh, but I couldn't. I didn't want to breathe anymore, the pain was so bad. I by no means wanted to die, but I just didn't want to feel, and it hurt like hell to breathe or hold my breath. It was worse than child birth. Unmediated child birth at that.

One of the doctors told me eventually that the results of the blood tests would take about two weeks. I made it out of the hospital with an inhaler and a prescription for Coumadin, along with instructions to return to the hospital the following day to get a shot in my abdomen of Heparin. 

Two weeks passed, and I thought that all the tests came back normal and I was just a freak of nature or something. I went with my grandma to help her get groceries at Hy-Vee. We made it to check out, and a call came in from my doctor's office. I quickly went outside before my phone broke up.

Holly, my favorite nurse, was calling with my  test results. At first, I was confused, as I wasn't getting my INR (clotting levels) checked for another hour. Then she clarified and said that she was calling about the tests from the hospital. She told me that it was called  Factor V Leiden, and could I please come to my appointment early because my doctor was currently researching FVL. That was a scary thing to hear.

I ran Grandma and her groceries are home and went to the appointment. All I really learned about FVL was that I only had one set of the gene, it was a clotting disorder, and I was being referred to an oncologist. That was not a pleasant thought.

I went to the oncology appointment. One of the first things the doctor told me was that hematology and oncology are in a way the same thing. That helped... a lot. He then explained that my blood was more prone to clots that just don't break up like "normal" clots. The way he put it was that if there were enough outside factors (smoking, hormonal birth control, long periods of sitting or laying down, pregnancy, long flights, and/or injury), I was heterozygous, meaning I inherited FVL from only one parent, and that increased my risk of a clot by eight times than someone who did not inherit the condition.

My knee jerk reaction was the desire to know what that meant. He said that I could not be on hormonal birth control (which was convenient as I had just switched from the pill to the shot), and that I was going to be on blood thinners for the rest of my life.I was also told that any additional pregnancies weren't the best ideas. He went so far to say that the FVL more than likely contributed to my two previous losses. And that I'd have to cut out the green leafy vegetables and anything else that had high vitamin K content. 

I stayed on Coumadin until the perfect storm occurred. I got sick of blowing veins at my weekly check ups, which I had to have because my levels were hard to control with my love of the vitamin K green leafy vegetables. I became borderline anemic once a month, which was pretty gross and expensive. And I lost my insurance. I went off and just crossed my fingers that nothing would go wrong.

Then, in June 2009, I had my positive pregnancy that would eventually carry the name Ryli. It had been five years since the diagnosis, and thankfully, albeit painfully, FVL did not mean that I couldn't have a healthy pregnancy. It just meant that I had to start injecting blood thinners as soon as possible and continue to the six week post-partum check up. It wasn't so bad, and the result was Little Miss Sass, 2010.

I stayed on thinners after being bridged back to Coumadin until X got tired of watching Ryli while I went in for blood draws. I didn't last too long off the thinners before I found out that I was pregnant again. More shots, and another little cutie in the form of Landry.

I had difficulty staying on Coumadin after I was bridged with Landry, because I couldn't take the kids with me, and X refused to watch them. I went back on briefly when we moved to Dallas, then stopped again, because of X.

I'm gearing up to once again go back on. I'm probably going to go ahead and get a uterine ablation or a hysterectomy to deal with once a month nastiness, and vitamin K is no longer discouraged, so long as you are consistent. 

My five kids have all come into this world with a 50-50 chance of being at least heterozygous (one copy) for FVL, same as me. Ryli and Landry both had to have surgery last year, so they were both tested prior to surgery, and they both carry a copy. Dace was tested after her senior year, and so does she. Connor and Tucker to date have not been tested, so I'm hoping that they didn't get it, which is statistically possible. The girls worry me slightly more than the boys, just because of the implications of hormones on FVL. May the ones who have it follow in the footsteps of whoever I got it from and never have issue.

For almost 29 years, I had no idea I had this. For 19 years, it wasn't even discovered yet. They say that knowing is half the battle. I have five incredible reasons to stick around for as long as is humanly possible.