15 November, 2011

Factor V and what it means to me

Ok, I've been a bit of a food bloggy this week, and I have to admit it's been fun to pretend to be a little bit of a Suzie Homemaker. But there's been something on my heart that I've been wanting to share for a few weeks now.

Part of my reason for writing this post is selfishness. I'm looking for anyone else with this or similar problems to compare stories with. My other reasons for posting are for education purposes and for you all to have a little more insight on me.

I'll back up and start from the beginning. I touched on this last week in my about me post, but didn't really get detailed. So here is how my story goes:

As I mentioned, I had moved to Auburn, AL in August of 2007. Just a couple weeks after moving I found a job working in the big bookstore right outside of campus. I went to work on my first day and it was pretty hectic. No one had time to teach me how to sell books or ring people out, so I was folding shirts and keeping the store straightened up as the whirlwind of people moved in and out. After just a couple hours, I began to feel really hot, then I started to feel dizzy. I walked back to my manager's office to tell him I wasn't feeling so good, but the next thing I know I woke up laying on the office floor with several other employees standing around me. Yup, I had passed out on my first day of work. I think I kind of freaked everyone out because they sent me home to rest. They called later that day and told me to just rest and not worry about coming for my shifts the rest of the week.( In short, they didn't need me)

I had only passed out one other time in my life so it sorta freaked me out too. I slept all that afternoon and then called my mom. She suggested I look for a doctor up there and go get checked out just to be safe. Well I called around and none of the Primary Care doctors were taking new patients at the moment. So instead I just went to one of the little urgent care facilities near campus.(We call them "doc in a boxes") The doctor checked me out, ran a few tests, drew blood, but couldn't find anything. Said it may have been a fluke but that I should consider "going to see my real doctor".. uhhh.. what are you exactly? As I was standing out the counter waiting to check out, I passed out again. Great. The doctor came back out, and encouraged me to go to my regular doctor to get a full work up. Why did I waste my time coming here then?

I was OK for a couple weeks after that. Classes started, I stayed busy and felt fine. The week before labor day weekend I got this shooting pain in the back of my right leg. It ran from glutes all the way down to my knee, most of the time it was pretty dull and just felt like I need a good stretch, but no matter what I did, I could not work it out. That weekend I was a bit homesick and decided to go home for the long weekend. By the time I made the 3-hour drive to Pensacola, my leg was killing me. I couldn't remember pulling a muscle or anything so I just ignored it for a few more days. It got worse and worse, by Monday when I was going to drive back to school I couldn't hardly walk on it. My mom took me to the urgent care here. The doctor looked at it and heard what had been going on and decided it was probably my sciatic nerve acting up. He wrote me a prescription for some loratab and told me to take it easy and not to drive back to Auburn just yet because sitting for that long could aggravate it more. So I stayed home.

It was a miracle that I had because by the next night the pain now felt like it ran from my leg to my chest. It felt so tight. It wasn't too bad during the day, but right after dinner it just got worse and worse. I couldn't cough, laugh, or breathe to deeply without being in excruciating pain. I couldn't move very much so I just say upright in the recliner and tried to watch TV and ignore it. By about 9p.m. I felt as though I couldn't breathe at all. I started crying and panicking and my mom rushed me over to the emergency room at the local hospital. Apparently my shortness of breathing didn't worry them too much because we sat in the waiting room for hours. Literally. It was about 3a.m. when they finally took us back to a room. By then I was exhausted and just in so much pain. Well apparently it was almost time for shift change of the doctors, so he seemed to be in a pretty big hurry to get us out of there. He came in listened to what was going on for a second(never took out a stethoscope, never ordered any tests) and decided that yup it was still just sciatica and some pain killers should fix it. He sent the nurse to get two injections of painkillers and wrote me another prescription of loratab. Well, I was so tired and in so much pain still that the thought of a needle being stuck in me was just too much, I sent the nurse away with the injections, and I thought my mom was going to kill me! We had sat in the hospital for hours and what was supposed to make me feel better, I turned down? I know it sounds crazy.

Well surprise, surprise, the loratabs didn't help. I slept sitting up in the recliner all night and was still in pain in the morning. I toughed it all day, but we talked to one of our friends who is a nurse and she said we should go see a doctor. So when the same thing happened again that night, back to the ER we went. This time we got a great doctor. He paid attention to what we said and then ordered chest x-rays and a CT scan(awful!) He came back to tell us that the reason the loratab wasn't helping is because I had pneumonia and would need a strong antibiotics and lots of rest. Finally some answers! So we took the prescription and went home where I was finally able to sleep semi-comfortably. Problem solved, or so we thought.

Early the next morning the ER called us to ask us to come back in. Apparently the radiologist got there and had gone over the tests from the night before and didn't think it was pneumonia. Back to the hospital and another CT scan(again, awful!). Well the doctor came back in to talk to us and it turned out she was right, I had blood clots in my lungs. (I've been known to be a bit of a hypochondriac and paranoid when it comes to health issues so this freaked me out) Not to mention that I had never been in the hospital for anything in my life, and the nurses were a little panicky too.

They started an IV and gave me an injection of blood thinners in my stomach. Those were awful. The shot itself didn't hurt, but the medicine burned for at least 30 minutes after the injection. At first they didn't want me to move out of the bed, there was talk of using a bed pan to go to the bathroom. I learned that blood clots can be ticking time bombs, if I moved and jostled one they could go to my heart and cause a heart attack or to my brain and cause a stroke. I eventually convinced them that I would be careful but I had to move. The IV they had gone was just fluids so I had to pee constantly! I ended up being in the hospital for about 6 days. They did a Doppler scan to find the blood clots had started as one large one in my right leg(known as a DVT deep vein thrombosis) and then when I was passing out I was probably throwing blood clots and they ended up in my lungs(called PEs- pulmonary embolism). While in the hospital I was seen by a hematologist who helped monitor everything. He was wonderful. He determined that no surgery was needed and the blood thinners would dissolve the clots. He got me released from the hospital(some of the other doctors wanted to keep me longer) and decided that I didn't need to give myself the blood thinning injections at home.

I continued to see the hematologist after being released. I took oral blood thinners(warafarin) for a year and a half after and had to go to the doctor's office once a week to have my blood checked to make sure it wasn't too thick or too thin. The doctor ran tests to determine what caused these blood clots since it was unusual for an active 18 year old to develop them out of the blue. As it turns out I'm Factor V Leiden(heterozygous). This means that I am genetically predisposed to blood clotting based on something in my DNA. I'm heterozygous which means I only got one of the genes for the disorder not both, which is very good news! I was on birth control at the time and it was determined that was probably the cause of the flare up. Hormone changes in your body, sitting for long periods of time, and other odd things can cause clotting in someone with this disorder.

Needless to say the birth control was discontinued immediately and I have never been given (nor can I ever take it) again. The doctor discontinued the blood thinners after about a year and a half since I'm heterozygous and pretty active. It shouldn't be a problem again until we're ready to have kids or if I travel a long distance.

Right now the only concern to me is pregnancy. We plan on trying to have our first baby in the next couple of years. I visited a doctor on base after enrolling in Tricare this year and she explained it further. (I last saw my hematologist at 20 and wasn't worried about pregnancy at that point so he never really went to in depth with it.) Basically I will be a high risk pregnancy every time. I will require the blood thinning injections everyday during my pregnancy and for six weeks after. (Not looking forward to that!) But the doctor on base told me that many people with Factor V have perfectly normal, healthy pregnancies with the injections and close monitoring. I just find myself praying that this is the case all the time now. We won't know until we try I guess, but my biggest fear is not being able to conceive or not being able to carry a healthy baby to term. I know I shouldn't be worrying about it now when we're not even trying, but I can't help but be a little apprehensive.

Now the real reason I'm posting all of this personal health information, does anyone else have this condition? If not Factor V leiden, does anyone have a similar condition? Has anyone had blood clots? What about pregnancies after blood clots or blood clots during pregnancy? I would love to hear from anyone who has any experience with any of these things. I have yet to meet anyone else with anything similar so I have never had anyone to talk to about it.

Thanks for taking the time to read my story!

3 comments:

  1. What a story indeed but glad someone figured it all out for you! That's why it's medical practice! HA! Have a good week!

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  2. The moment you said leg pain I thought-- blood clots. I'm surprised the doctors didn't pick up on you diagnosis more quickly. I feel like there are so many commercials and ads warning about blood clots from birth control that it would be a natural thought pattern for a physician. Maybe it's just because I've worried about it from time to time. Most importantly, I'm glad that you're okay. Thank god the clots didn't do major damage.

    I have a genetic disorder as well, so I understand that initial shock of learning that your body is programed to fight against you. Genetics are an amazing thing.

    Thankfully, you now know how to have a healthy pregnancy, and what your future children will be predisposed to. Like you, I'll probably have to be monitored before/during pregnancy. Not easy! Good luck with your new journey. :)

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  3. Thank you for reading my story and teh encouraging words!

    Jillian- I'm glad you stopped by to read this. I was encouraged by your story and even though our conditions aren't the same, I've appreciated having someone else's blog to read about a somewhat similar issue. Best wishes to you as well! :)

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