a little more about Factor V Cause everyones always got something to say

So I will apologize in advance if today's writing is a little on the UN-organized side, my mind is everywhere and I am still in the habit of writing as if I was writing with my trusty old pen and journal. Today may sound like I am whining or just having a tantrum, I may be, but I also may find a method in my own madness so lets see....

My day was okay for the most part, I pulled a typical me and apparently entered the wrong time for my appointment at the neurologist in my blackberry so the kids and I arrived an hour early. Not A complete catastrophe, (the hour could have been used more wisely had I thought to bring my school work with me to study, but I didn't think I would have the time, HA!) So we were an hour and 15 minutes early.Not to worry We walked through the tunnel all the way over to the brand new in patient rehab building to see some of the people who I know which was nice, until our talking ran late, we took the wrong elevator and had to try (try being the operative word here) to run.. I DO NOT RUN..it's not possible.. back through the tunnel to make it to my appointment on time. We barely make it,the doc See's me, we adjust some meds around, no biggie. Now you have to understand something. This is the ONLY doctor we trust now. Everything gets run past her and her nurse. Not my primary MD, my neurologist. This is the woman who will call me and calm me down when I have had a panic attack, run an MRI to make my mom or husband feel better, or do a cross reference on medication to quadruple check that none of it will have any side effects that we do not know about because of my blood condition. She goes above and beyond what normal doctors do to make a patient feel safe and healthy, through a year and then some of telling doctor's I was in severe pain, seeing pt's, ot's, massage therapists, having, MRI's, CT's, they were all ready to call me crazy, al of them except my neurologist. God love my mom and my husband who were very, VERY supportive, but even they were starting to suspect it was in my head. Until my Neuro ordered an EMG OUCH by the way!! and they realized.... HMMM she's not crazy. So now I get these injections that are supposed to block the pain signals that get sent automatically through my nervous system. to hard to explain. Anyways, all of that was to explain that seeing her is not a reason for me to be wary or get worked up, most people get anxious, I like going to see her, she has faith in my ability to research my condition and we work together to find a good solution. so anyway we adjusted one of my meds to a higher frequency to see if that would help me with my "tone"
(not singing tone, nothing will help with that, I have jumpy muscles, that if I try to make my arm straight you can actually watch it start shaking. not the technical way to explain it at all but for anyone who has no idea that should give you a visual, even better , it makes me so stiff I look like a robot if the meds aren't working when I try to move, and then mom and my hubby are always saying, relax you shoulder, your walking from your hip again, hehehe , I love them, and they know it) So any way We\she is thinking more pills more often may help, you know keep the level of the drug in my blood at a constant in my system? I don't know but that's the best alternative at the moment without adding extra( and by extra I mean new) medications.
When I came home from the hospital I was on almost 18 different prescriptions, I had 3 different pill organizers labeled am, afternoon, and pm. I have slowly but surely been able to wheedle my way down to the essentials so that almost exactly 2 years later I now take 12 , and you can combine 2 of them because the insurance company wont cover a certain medication so I have to take 2 pills to make 1, so really it's 11. 2 are not prescription, but are still mandatory so only 9 and all of them are less frequent, I still have a case to carry pills in for my purse and an alarm set to remind me to take them or believe me I will regret it, my morning or what I like to call my Breakfast is now only coffee and 3pills 4 if I'm having nerve pain, lunch is 2 (+1 if nerve pain) before bed is when the pill organizer comes in 10(+1 if in pain) and I also have the added option of motrin 800 when needed. the +1's next to the counts are for the medicine that will confuse the nerve signals, and the theory is that it will block the pain. I HAVE to take at least 1 a day to keep the drug in my system, however depending on how bad the pain is you then determine weather or not extra doses need to be added, this is not a pain killer and has no immediate effect, it's more like aloe on a sunburn, it makes me sick to my stomach at first, but after getting used to it you notice that it's doing it's job.
If I am thinking clearly only 1 other pill is actually optional and that is the heartburn\acid reflux pill, funny thing, that was never a problem until they gave me 18 different medications to take, now it's meds to fix the problems the other meds cause. All of the other's though are MANDATORY, WITH SEVERE CONSEQUENCES FOR NOT TAKING THEM, like .. not living!
Starting with, Asprin funny huh... those who know me are probably rolling their eyes going stop being so mellow dramatic, like a woman from my class last night, We were talking about vitamin K. (this helps your body produce platelets, allowing blood to clot etc.) when babies are born they are given a sot of vit K immediately. because you produce this vitamin from bacteria in your stomach , babies are in a sterile environment when born, no bacteria, yadayada. My question was, Could you cause damage by giving Vitamin K to a newborn who has a genetic condition like Factor V Leiden mutation? I though this was a good question. So she says " most people go there whole live without ever knowing they have it, it's not really that big of a deal, my daughter has it, we would have never known except she had to have heart surgery... she has to take half an aspirn every other day, that's it"
My response to this is that, she's right, most people go their entire life never knowing anything was ever wrong, until something is, and then it's to late. Women who have this can have miscarriage after miscarriage,people can have heart attacks, strokes, lose limbs all because they had a condition they didn't know about, a clot formed, stuck somewhere, the doctor didn't know what they were looking at, and then, well then.. Then it effects everything. Factor V Leiden mutation means I will never be able to take hormone replacement, I should have never been on birth control, It means that every medication( even over the counter) I put into my body that has a warning about stroke or heart attack, that now applies to me, It means that on hot days I HAVE to make sure to drink a ton of water, it means that every risk factor for you equals 5 for me, it means I may have unknowingly passed on this gene to my children. (side note... My kids have been tested 2 times both are negative!!!)It also means I will never be able to get life insurance to be able to provide for my family in the event of a tragedy, Health insurance companies can deny me, or charge me high rates, this is not something that you just take an asprin for and forget about it.
I would also like to say that because someone thought like her, ( my father's family)they didn't do the research, they didn't inform their children, I was unaware that this was even a possibility. I found all of this out After I had had my stroke, After the damage had been done. I had an aunt I never knew, with a condition I never knew about, which I would bet she never knew about, who died from this condition, From a blood clot that went to her brain.
You see Factor V Leiden mutation causes my blood to have more (pro)-thrombin (sticky stuff) on my platelets then your average person so when I cut my leg shaving and it only bled for a sec I never thought any thing of it, well I'm kicking myself now. I'm not saying everyone who doesn't bleed like a stuck pig go out and get tested but I think you get my drift. So even though I am only 26 5'2" tall and around 135lbs I take 325 mg of enteric coated aspirin daily and right now that is debatable as to whether or not that is enough. I take enough asprin to bleed out a 350lb man and parts of my blood still may not be thin enough ... I am a medical cunundrum!!! See the thing is, my doctor's and I DO NOT FOR ANY REASON want to put me on Cumidin or warfarin because well then, on top of everything else I have to fit into my schedule I would have to fit in weekly visits to the lab to get my blood drawn... my mother would be smacking me right now...
The MAIN reason we don't want to do it is because the risks are to great, a fall to hard that knocks my head and the next thing you know I have a brain bleed, A shaving cut that won't stop and I'm in the er for a transfusion because I've lost to much blood, and ask my husband, sister and mom, I cut my legs A LOT when I'm shaving. So although my blood would be thin enough would it be too thin and could I be careful enough.
As for the factor V itself. I said earlier, My children do not have it, but it is genetic, which means it came from somewhere right? Well it came from my Father (we call him the sperm donor) it came from his genetic contribution, thanks...for that BTW, so anyways, the man wont get tested, refuses to tell my cousins excetera, so that task is left up to me, I have tried and con- tinue to do the best that I can. however my task now with all of the research that I have done is to keep My sister and my 2 nieces and nephew who are all positive for the mutation, and anyone else informed as best as I possibly can.
I continue to research because medicine continues to amaze me, I knew nothing about factor V until it effected me, now what I know could fill a small book, an just to keep any one else thinking 6% of Caucasian women have some form ( heterozygous,(1 mutated gene) homozygous(2mutated genes) ) I am not advocating people running out and demanding genetic testing, and I remind you it IS GENETIC testing, results of the test will be shared with, insurance companies, life insurance companies all kinds of things can happen. Think carefully, especially if you are having your children tested, for me there was no choice, I had to know I would not risk their health because of insurance regulations. For some that may be an issue.
Had my doctor's known more about the condition, and it is a condition not a disease, it can not be contracted, passed, or cured, only managed, they may have tested me sooner. They may have recognized my migraines, and unbelievable exhaustion before my menses for symptom's of something bigger instead of just pms. All of this may have been prevented If the sperm donor had swallowed his prejudice, his pride, and had a conversation instead of ignoring the obvious.
I guess in all of my rambling and whining my point that I have to make is that Yes, for some 1 thing may never be an issue, it may hide in the background of your life and never cause you pain, or injustice, but would you take that risk when then to prevent disaster all you had to do was admit the possibility of an imperfection in your gene pool and submit to parting with 1 tube of blood, you could probably have the scenario of the woman from my class, walking through life an asprin a day never a problem.
I Wish that it was that simple for every one, and for those of us who don't have it that simple.... We are a little bit lucky, cause we get to feel good about saving your asses.. ( sorry that was petty I know, but the nerve of some people!) Alright I have to take my son to school, and inform My sister and my uncle about a Vitamin K issue, I'm sure I'll be back later!! Have a great day~!!!!