My childhood was always a battle spent either in the ER or in the hospital...in fact, there were times when I would play trivia with the residents and medical students..and sometimes I would win. :) Ask my mom...she remembers. Anyway, I was diagnosed with multiple things as a child that I won't get into right now, as they are irrelevant, but just to keep in mind, I've always been "in and out" of the hospital. I've always have GI problems, as well as headaches. I also have allergies, and I've had several episodes of anaphylaxis. :) Fun times.
Fast forward to the end of high school...I think I was about 17 or so. I was living in rural Iowa, and we made the 2 hour trip to Des Moines for my regular GI visit. My doctor noticed on one of my X-rays that my back was curved. I remember her pointing it out and saying that I have scoliosis. Makes sense....my backpack always falls off one shoulder, as well as my jacket, and I'm always stepping on one pantleg. I didn't worry too much about it. I knew I'd been a twin in utero, that my twin had died early on and I was born prematurely and had IUGR, so I wasn't too shocked. Why hadn't anyone noticed this in the last 8 years that I've been getting X-rays done every couple of months??? Thanks.
Fast forward to the summer of 2006. I was working 2 jobs while in nursing school in Omaha and taking a couple of summer courses to lighten my semesters. Luckily, I'd just finished one course and only had one left. I was working at the hospital and I'd felt like I was coming down with something. I had a terrible headache and my ears were burning. I remember having a fever, but I don't recall what it was at that point. I'd went back to my dorm and rested in bed while watching a movie (actually, it was Boy Meets World on DVD, to be exact) and took some Tylenol. I woke up and my head was absolutely killing me. My fever was 105 something. I remember not being able to move very well. I was able to call my mom, and she took me to the ER. Fast forward a bit, ER x3 nights. See...they didn't think anything was really wrong with me. They did a spinal tap. Zippo. They did CT scans. Clear. I started puking up a storm. Morphine did nothing. Dilaudid, no help. They finally admitted me. It's about damn time! Well, upon arrival to my room, my IV was going bad. Now, remember me saying I have a history of spending time in the hospital as a child? I know I have crappy veins. I've spent the last 3 nights (maybe it was 4, I can't remember...it was at least 3) in the ER, so I've had labs and IVs in both hands and arms at this point. I look like I've been shooting up. My IV is starting to go bad. I'm on major pain medications, as well as a caffeine drip (they seem to think I simply need caffeine for a headache. Morons). I show the nurse. Mind you, I'm a senior nursing student. Yes, I understand, I'm not a nurse, but understand me, you're just a new graduate RN, and I'm a senior nursing student, who has spent the majority of her life in the hospital with more lines in her veins than what you've seen in the few years you went to school. Thanks. I tell her, don't take this line out until we have a new one in for sure, as I'm due for pain meds in an hour. She said she wouldn't, and that she would just try to save it. What did she do? She took it out. Why did she take it out? She said she's a really good IV starter and she never misses. I told her to get her shit in there now and get moving. She has one hour. Guess what. She didn't get it. Team Lead RN didn't get it. Anesthesia didn't get it. You know what I did? I fired that stupid bitch. Yep. That nurse never came back into my room. I told her to get out, and never. come. back. So, if you're a nurse, a student, or a potential nurse, please use this as a learning experience....LISTEN TO YOUR PATIENT. PLEASE. I do it as a nurse myself, and when I'm a patient, I expect my nurses to do the same. If they don't, their supervisors hear about it. :)
Moving on, I was in there for about 2 weeks...a little less, I think. In a nutshell, they said I was crazy, drug-seeking, and that my headache was due to my LP (spinal tap)....hey dipshits...that's why I came into the ER, was for headache and fever....?! I begged them to do an MRI...I thought I was either going to have an aneurysm or I had a tumor. They refused to do an MRI. REFUSED. Why? That's money for them. What really irritates me is that I worked for that hospital. I won't say who...I'm sure many of you reading this know or could figure it out quite easily. They sent me home, saying I made it up. I had a "virus." I was crying as the nurse pushed me in the wheelchair, and was puking the entire way. Thanks, guys.
26 hours later, I was going unresponsive at my parents' house. I was much more dehydrated. My mom took me to another hospital. I respiratory coded in the ER there. They did a CT, which turned out to be negative. I remember hearing my mom yell, but that's about it. I guess I do remember a student nurse putting down an NG (I hate those damn things) and I puked....that's all I remember. Apparently, the doctor pulled my mom aside and asked what she wanted. My mom said that I'm never like this (duh, anyone who knows me knows I'm not quiet, and I would have been screaming and pitching an effing fit at that point like I had been in the beginning at the other hospital before I started losing consciousness), and that I had begged them for an MRI, but they refused. He ordered one. In the meantime, I was diagnosed with migraines. Thank god I didn't hear them tell me that, or I'd have rolled my eyes and told them to screw themselves. Those of you that know me know that I would have. :) So, guess what the MRI showed??? Three beautiful blood clots...IN MY BRAIN. Oh, that's nice. My mom said that one of the bitchy residents (which one???) came back and said she owed us an apology. Really? Can I get that on video? I was in a coma, sorry, I missed it. Damn! I was immediately started on Heparin and Lovenox, as well as steroids, as my poor brain was swollen. Thanks a lot, you effing morons. Apparently, I was very close to having a stroke. In fact, one of my pupils was sluggish when I respiratory coded in the ER. Eventually I had to get a PICC line, as I was out of line access and I needed it for meds and labs. :( I was so upset and scared, as I worked in pediatric transplant, and many of our children died due to infections from central lines, plus I was simply vulnerable at that point. When they put in my PICC, it took SIX FREAKING POKES....because my arm was so full of clots. :(
I was in that hospital for about 2ish weeks or so, and was FINALLY able to go home. I'd been in the hospital for 28 days. I had been in bed, literally not walking or sitting up at all for at least 3 of the past weeks, minus the car trip back to the hospital, in which I think I was carried. I don't remember it. I didn't eat or drink anything for about 2 1/2 to 3 of those weeks either. I was down to 94 pounds...I'm 5 ft. tall, but that's still too light. It was a struggle to walk from the couch to the bathroom. Everytime I got up to stand or walk, I would have chest pain and start coughing...my lungs weren't used to it. So now, when I have patients (more like when I had adults patients or I take care of some of the older kiddos now), and they complain about getting out of bed or how their legs cramp up, I totally get that. I was on Lovenox for a while, then bridged to Coumadin. I was at the store one day in July right after I'd been discharged from the hospital, and it was so hot out, I wore shorts and a spaghetti strap tank, despite my bruised arms, hands and legs. My shots were given in the backs of my arms and legs, since I was so skinny due to my weight loss, and my IVs, labs and PICC line pokes left tracks and bruises all over my poor arms and hands. I heard this young couple behind me saying, "Oh my god, do you see that?" I wanted to smack that bitch. Oh well. She didn't know any better.
Lab results came back a few weeks later..but they never called me with them. I drove to the hospital, walked to the medical records dept and copied it, then walked to the Hem/Onc clinic and handed it to a resident and said, "What the hell does this mean?" I have Factor V Leiden, heterozygous, R506Q polymorphism. Nobody ever really explained it to me. Over the years, I've taught myself. I've found in the last several years that there's been a lot more research done on FVL...when I was intially diagnosed, there wasn't much out there for me to look at. Here, I will try to break it down as best as I can. At the time, I had been on birth control pills. Obviously, that's no longer the case. Hormones increase the risk of of clotting.
Factor V Leiden
I believe Factor V Leiden was discovered in 1994, which is why there isn't a ton of info out there. To understand FVL, you must first understand how clotting works. So, in the human body, there is a process called the Clotting Cascade that occurs when there is a break in a blood vessel (a cut or such), which works to stop the bleeding and plug (clot) off the area that is damaged. One of the proteins in that cascade is Factor V. Factor V works alongside with other proteins, namely Protein C and Protein S to make clots. When Factor V is active and making clots as it should, Protein C and Protein S work to shut it off, or inactivate it. With Factor V Leiden, the normal Factor V has a mutation, which makes it resistant to being inactivated by Protein C, so Factor V continues working on making clots for longer than it should. I've seen this be referenced as "Activated Protein C Resistance," but it's essentially the same thing as FVL. Don't get confused.
Now, there's 2 copies for the Factor V gene, one from each parent. If you have 1 mutated gene, then you would have the Heterozygous Factor V Leiden..1 normal copy from 1 parent and 1 mutated gene from the other. This would mean in your body, you have 50% Factor V Leiden, and 50% normal Factor V. You also have a 50% chance of passing it on to your child if your partner has no FVL gene. If you have both copies, meaning you received one mutated copy from each parent, then you have Homozygous Factor V Leiden. This means you have 100% Factor V Leiden and no normal Factor V, and you have a 100% chance of passing on Heterozygous if your partner has no FVL gene. I don't want to get into the chances of clots with each type, as I've found so many different values, but there are plenty of resources out there, and I would be happy to help anyone if they would like some assistance. Just ask! :)
Now, the risks associated with FVL and pregnancy vary with personal history. With my given history, I am, obviously, very. high. risk. I was told I'd have to be on Lovenox from the time of conception until birth. I was also told I'd be on Coumadin for life, but I'm now off Coumadin and take Aspirin, but now my hematologist is questioning that. I'll add that in another post. Back to pregnancy. FVL has been known to increase the risk of pre-eclampsia, HELLP syndrome, miscarriage, stillbirths, IUGR, and placental abruption, as well as the obvious pulmonary embolisms, DVTs, or in my case, blood clots in my brain. Nice.
Of couse, with FVL, I have to be careful with airplane rides, long car trips, hot tubs, tights, massages, and plenty of other things that most people wouldn't think twice about. At least now that I'm not on Coumadin, I don't have to worry about my diet as much, and I don't have to get PT/INRs drawn weekly...I was the youngest by about 60 years in that clinic. I got plenty of stares. :)
So, fast forward to...maybe 2 years ago? I was in a little fender bender. I went to a chiropractor...she says, "OMG! Your scoliosis is terrible! But I can fix it and make you taller!" Really? If you can give me 2 inches lady, I'll cook you dinner for a month. Well, she couldn't. Six months of weekly treatments, zippo. She sends me off to a spine doctor who does his own films. He says I have Spina Bifida Occulta. Really? That doesn't sounds good. I asked about pregnancy. He didn't sound concerned...in fact, he says that many women say that pregnancy relieves their back pain. Great! Let's start baby-making now! I research Spina Bifida Occulta, and learn that it is associated with some foot deformites...interesting, since that just started happening within the last year...I started needed injections every once in a while and using orthotics in my shoes. Luckily, and old (I mean I've known him for a LONG time...like since I've been in diapers...old..) family friend podiatrist was able to treat me right away. With this new diagnosis, I made the connection and thought, huh...interesting. Why didn't anyone connect those dots? I call up the old :) family friend Dr. and let him know, and he knew right away when I told him my new diagnosis. No issues for a few years. Jim and I start wedding planning, buying a house, working many hours, yadda, yadda, yadda. At one point later during another hospitalization for more fevers and dehydration, it was found that I have a heart murmur. Cool. Could that be why my hands and feet turn blue and purple? P.S. NO...I DO NOT have Raynaud's.
Fast forward...my OB GYN is at the original hospital that nearly killed me. No, I do not overexaggerate. Dead serious. However, I love her to pieces. My hematologist is at the other hospital...he's very smart, but has a lot on his plate, and frankly, we are not comfortable with him, and I would like all of my doctors within the same hospital for when I have a baby in case shit hits the fan. My neurologist, primary care doctor, and infectious disease doctors are no longer with hospital #2 (with hematology), so there's really nothing else keeping me there. Reluctantly, I start shopping for a new Hem/Onc Dr. (hematologist). I tell my OB GYN about my new diagnosis of Spina Bifida Occulta, I see the worry in her face. She says that she needs to know that for certain. Uh oh. I had that feeling. I also start seeing a new neurologist for headaches, against my will, but he's wanting me to get more MRI's and other tests done to confirm a suspicion that he has, which I am currently refusing. I don't want to get into that right now. In the years between 2006 and 2010, I had SIX MRIs...not including X-rays, CTs and other tests...and I've had plenty of other MRIs, CTs, X-rays, and weird ass tests that most people have never heard of. I'm sure I'll have tumors popping out everywhere sooner or later, so I'm in no hurry to rush into any more scans, plus those little shits are expensive..I'm still paying for one of my hospitalizations in 2007! Like I'm going to add on to that! After some referrals by my OB GYN and some co-workers and my hubby's co-workers, I see a new Hem/Onc at hospital #1...god help me. He first accuses me of Dr. hopping. I explain to him what I'm doing. Then he tells me that I need to take Vitamin E. No, I want to get pregnant. No Vitamin E. Thanks. Then he wants me to get labs drawn. Fine. Of course, guess who didn't listen and use a butterfly like I suggested, blew through 2 veins and caused me to be late to another appointment?! Yep. LISTEN TO YOU EFFING PATIENTS! That person did admit she should have listened to me. Damn right, you should have. Sad thing is, I was well hydrated, and I haven't had a ton of pokes done over the last couple of years, yet my veins still suck. Sorry! I will never be a druggie! :)
So, I am not Protein C or Protein S deficient...so that is good, but they want more labs. Really? I tell them over the phone, "Your phlebotomist blew my veins in both arms and I had labs drawn in my hand, from another appointment. You want to send me to someone who won't screw this up? I'm wearing long sleeves to work and it's 95 degrees out?" They laughed at my humor. I was serious. A week or two later, I get a letter in the mail. How nice.
"Congratulations! You have MTHFR Gene Mutation. This runs in familes. Please tell your family members. If you want to get pregnant, call your doctor first. Have a nice day." Okay, maybe it didn't sound like that, but it wasn't too far off. Really?! You sent me an effing letter in the effing mail? What kind of bedside manner is that? Chicken shit. Yes, I said you're a chicken. shit. Problem is, I'm smarter than they give me credit for (I have a bit of a swelled head...maybe it's just the red hair)...I know there's more detail than just MTHFR mutation. I try to call the office for a week...no answer. I leave messages. Nothing. Meanwhile, I call my OB. Again, I love her to pieces. I tell her the news. She receives the labs. She tells me over the phone, as I'm pulling into my garage after a meeting at work, "I'd prefer you don't get pregnant. I'd rather you adopt." After that conversation, I sat in my car for around 20 or 30 minutes, and cried. Hard. I kept trying to get ahold of the Hem/Onc office. They finally call me back. I'd left a message, asking them what type of mutation I have. When she calls me back, the nurse coordinator says, "You received a letter. Didn't you read it?" Yes, dipshit. I read it. There are multiple types of the mutation. Her response. "I don't know which type. I'll have to look that up." Oh geeze, you couldn't have done that in the last 1 1/2 weeks that you've have my GD message on your machine? I'm not bitter or anything. I think the part that irritates me the most is that, I'm a nurse, my husband is a nurse, we have other family members that are nurses...my husband and I used to work together, and I know FOR A FACT that both of us work our ASSES of for our patients, yet I continue to encounter some of the biggest assholes in the universe as my own caregivers, and it's not just me..my poor hubby deals with this kind of crap with his own health issues too. Anyway, back on track....she gets back and says "You have Compound Heterozygous." I said "Okay, what's that?" She said she didn't know. I said that's fine, I can look it up myself. Thanks. Jesus. I researched it....not good. MTHFR Gene Mutation Compound Heterozygous for C676T & A1298C. Out of the 5 types, it's the 2nd most serious type. Luckily, my homocysteine levels were normal, but that could change. Called my OB. She's not too thrilled. Still is wanting us to stay away from TTC. I'm certain that we won't be able to adopt for multiple reasons that I will not get into on here, and I don't want everyone telling me how easy it is, because frankly, I'm tired of hearing it and defending myself. I did, however, tell her my reasons, and she now understands, so if you think you know better than me, might want to think again.
I will now try to explain MTHR Gene Mutation as best I can, but I was JUST diganosed within the last couple of weeks, and I haven't had much down time to research it...I've only research the mutation that I have, as I said, there are 5 types.
MTHFR Gene Mutation
To understand this, you must first understand homocysteine. Homocysteine is a chemical in your blood that is made when an amino acid (a building block of protein) is broken down. Everyone has it. When you have too much, it may cause irritation in the blood vessels, increasing the risking for atherosclerosis, coronary artery disease, heart attack, stroke, and blood clots. I haven't really found a ton of concrete info confirming this, but I've read this multiple times. When a person has high homocysteine levels, they have have MTHFR (methylenetetrahydrofolate reductase) genetic variant. Don't even ask me to pronounce it...I haven't mastered it yet. I'm still practicing. :) I read that some studies show that lowering homocysteine levels don't necessarily decrease the risk for clots. hhmmm It sounds like it's poorly understood? I will start asking around. Of course, folic acid, vitamin B6 and B12 break down homocysteine and that is why those are given to pregnant women.
Now, again, just like FVL, people with MTHFR can be heterozygous or homozygous, but you can also be compound heterozygous, which is what I am. Lucky me. The order of potential severity from most to least is:
1. C677T & C677T (Two C Copies – C677T Homozygous)
2. C677T & A1298C (One Copy of Each The C & A – Compound Heterozygous) <-----THIS IS ME!!!
3. C677T (One C Copy – C677T Heterozygous)
4. A1298C & A1298C (Two A Copies – A1298C Homozygous)
5. A1298C (One A Copy – A1298C Heterozygous)
Now, what does this have to do with pregnancy? Most women know that we must take the previously stated vitamin and folic acid to prevent neural tube defects and stillbirths, right? Correct. MTHFR increases the risks of stillbirths, recurrent miscarriages, neural tube defects (spina bifida), pre-eclampsia, as well as many other things.
This, coupled with my FVL, as well as my history of clots without having been pregnant is a HUGE red flag. My poor OB is beside herself, and my heart has been breaking ever since. The other side to this whole circus is, my hubby had a vas years ago and we are unsure if he will be able to reverse it. Aside from that, I will be unable to take any hormones anyway, so a natural conception is out of the question. I have quite the complicated sitation on my hands, and frankly, I don't feel like there is anyone else out there in the same boat as me. Yes, I've read about women with MTHFR and FVL, but with brain clots, compound heterozygous, most likely needing a sperm donor, and did I mention I may also have Arnold Chiari Malformation? Yeah...don't really feel like talking about that. If I do have that, it may explain the headaches, but there wouldn't be anything for me, as I wouldn't be a candidate for surgery. :( I also developed bilateral tinnitus (ringing in my ears) a few years ago...and it never. goes. away. Not sure what caused it, but it's annoying as fluck...and when I get my headaches...it's really annoying as fluck. We've also recently found that I have multiple issues with my eyes, such as convergence insufficiency and accomodative infacility, among a few other things, which may also contribute to the headaches, so I'm holding off on the tumor-causing scans for the time-being while I am going through eye therapy...yes, I said eye therapy. It's like physical therapy, but for your eyes...it hurts like hell...gives me headaches...and the insurance companies are completely against it. Jerks. :) So, for those of you who think YOU have a lot going on in your life...bite me. Oh, and this is just what is going on with me...I haven't even mentioned what is going on with my poor Jim...who's going through his own medical hell. :( I realize I may sound somewhat bitchy here, and maybe I am...I know I am lucky to be alive just with the FVL and the clots I had alone. Given the rest of the diagnoses, I'm shocked that I ever made it out of the uterus alive, (sorry, dear twin), and yet I've only had the one episode of clots (that nearly killed me, yes, but only one BIG episode) in my life. Frankly, that's amazing. Not to mention that if I do have Arnold Chiari Malformation, I am, well, very lucky to be the way I am. Some days, I feel it's more of a curse, yes, I am not afraid to admit that...but then I look at the children I care for and think, how could I think that? So, for those of you in the past (and present :) haha) who have teased me for my short stature, you can just kiss my butt. I would be taller, however, I have Spina Bifida. Feel better for making fun of someone? :P
I am hoping that by opening up and laying this out there for everyone to see doesn't dig me into my own grave...I am searching for some healing, hope, and perhaps some others out there struggling, as well. As of right now, I am trying to talk my doctors into getting together for a care conference so that we all can be on the same page. We are considering adoption, but at this point, I would like to be able to conceive and have a successful pregnancy. My fear is that I wouldn't make it, or that I would pass one or more of these on to my poor child. :( I'm not sure how I feel about that at this point...part of me feels selfish, in a way.
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