Clearblue Easy Fertility Monitor

Yes, I started using it...finally! The first one I'd purchased died all of a sudden, and the second never made it to my house, despite showing that it had been "delivered," USPS can't prove WHERE it was delivered. Nice. They told me that I must have received it and wasn't aware. Yeah...I must have mixed it up with my bills or the socks I purchased for X-Mas for AJ. My bad. WHAT? Anyway, I finally forked over the money and bought another. :) So far, it's only shown moderate and high fertility, but no peak yet. I've only been using it for a couple of weeks, so I'm hoping it's just learning my body. We will see. I'm excited to have started using it, but getting anxious since our house isn't ready yet. We still have to work on insurance and figure out what will work best with my meds that I will need. I will (hopefully) start Neevo sometime early next year. I want to have it in for a few months prior to ttc, which is what perinatology suggested, as well. Here's hopin'!

.

Getting Back On Track..

My deepest apologizes for not keeping this up-to-date. :( Our house has been CRAZY! With the kids back in school, AJ starting her dance classes again, and Kyle playing football, we've had hardly any time to breathe! Jim's foot has become much worse, and there wasn't much (in my eyes) being done, other than medications that weren't helping. So, I decided to start my own research. Literally. I printed probably over 100 pages of studies and such, grabbed highlighters and went to town. We sat at Buffalo Wild Wings for hours and just read them over, highlighting what we found interesting or potentially helpful. It was somewhat depressing, I suppose...neither of us had really dug that deep into his condition. I've always been so focused on my medical health, I've never had time to even think about his. Since he has many doctors on his case, many of whom he trusts, I never felt the need to intervene...until recently. I found a (very) few studies on Ketamine and the results of patients with RSD/CRPS afterwards. To me, it sounded pretty good....though not guaranteed. I also found a couple of studies on HBOT therapy. I quickly notified Jim of my findings, and he forwarded the information to his medical team. Since then, it's been an uphill battle trying to get the approval for the Ketamine drip to happen...not only does it HAVE to be through the VA (as Jim's injury is service-connected), but it must be approved as a treatment altogether. :( Since it's been taking some time to gain approval, and Jim is getting worse every day, I began researching other facilities who specialize in this treatment. I found a couple in the US that I was impressed with, one of which is in Florida. My plan (for now) is to (somehow by a miracle) get Jim to Florida for treatment IF we cannot gain the approval for it to happen here in Omaha. I hope it doesn't come to that, but when we discussed it (happened to be on my birthday, which is the one day of the year I absolutely DREAD), I saw tears in that man's eyes (for the third time in my life). To me, that was gut-wrenching. I PROMISED him that I would get him to Florida if all else fails. I will take out credit cards, do fundraisers, whatever it takes. We've been (trying) to work extra here and there to help with MY medical bills and the house......and we're (kinda) failing at that...so I will need to come up with a better plan. For now, we are trying to focus on his treatment being here. While we do love Florida and miss it very much, we would rather do this closer to home, as it is a very big deal. I recently talked with Jim about trying to journal or blog about his diagnosis and treatments. I find it (kind of) funny that my blog went from wedding planning, to house remodeling, to ttc, to medical issues that are keeping us from ttc. I am proud to say that he recently started his own blog, which is a HUGE step for him. If you could, please check it out and support him, even if you really aren't interested in his diagnosis. If you are interested enough in me and you're on my blog, you should be interested in Jim, as he IS my husband, best friend, rock. 

Jim's Blog

 Anyway, with all of this going on, I've been doing better until just the last couple of weeks...starting to get headaches daily again, however, I think it may be due to the insane Nebraska weather, i.e. 70 degrees today, 30 degrees tomorrow. Just sayin'. :) We have done SOME work on the house, though not nearly as much as I would have liked. We were stopped due to the bathtub leaking into the garage...I found the ceiling falling the the floor one day. Seriously. So...that was about a week's worth of labor. :) Meanwhile, I refinished all of the doorknobs in the house, which was a HUGE pain in the butt! The paint would NOT stick, so it took forever! Lesson learned. I've also started to sand and re-stain the window frame in Kyle's (future) room....Jim finished the closet and made a rack for his clothes, so I started staining those, as well. I'm beginning to think about doing the baseboards, and I HATE them throughout the house, and buying new is soooo expensive. Not sure yet. Next is pulling up the baseboards and carpet and putting up the wall, then painting. For my birthday, I asked for a Home Depot card to help us get some things done around here. :) ahahahaha These are some pictures of the things I just mentioned.I also recently changed our mailbox. As you can see, our old one was HIDEOUS, not to mention the condo of many, many ants that would crawl all over our mail. We clean, sprayed, and shook that mailbox, but they always came back. We found a used one for a few bucks, so I quickly bought some glitter paint and texturizing paint and went to town. :) Jim jokes that that mailbox is for the home of Edward, the sparkly vampire. :)

Bye bye, old mailbox!

Covered with some kitchen wrap. :)

Mod podge did NOT work with this, so I just sprayed a sealant instead.

Covered some of the numbers, but you get the idea. :) So sparkly!

For Kyle's closet!

Working on the ceiling. :(

Meanwhile, I had my own projects on the other side of the garage.

Kids helping Dad with the ceiling.

More trim. :)

.

Would Somebody Tell Me What The Eff Is Going On?

So, I finally spoke with my perinatologist's nursing coordinator last week. I asked questions about the Heparin and labs, since the others nurses in the clinic couldn't answer my questions. Now, I know that Heparin is very unstable, unlike Lovenox. There is a risk of developing what is known as "HIT," or Heparin-induced thrombocytopenia. For those of us that work in the medical field, when you hear "HIT," you think, "Oh, SHIT!" In other words, it ain't good. :) So, with that in mind, I was discussing my concerns with the nursing coordinator. She said that we would NOT be doing weekly OR bi-weekly labs; they would only be done with each dose change (i.e. every trimester). Um, what?! A.) That is NOT what I was told in the first place by YOUR staff. B.) That is just plain effing stupid. C.) That is effing SCARY! I mentioned this to a couple of staff that I have worked with in hematology, and THEY found it to be preposterous, as well! Trust me, I would MUCH RATHER be on Lovenox, but given the cost difference, I don't think we can afford it, at least not with this insurance that we currently have. However, I WAS thinking that, with the labs that I would be getting (or so I thought), the cost may be a wash in the long-run. Now, it's not looking that way. :( The only other thing I can think of doing is calling my hematologist (VOID help me), and see what his opinion is on the matter. Perhaps I would get labs done through him instead?! Here's a nice journal article I'd ran across on HIT, in case anyone is interested! Enjoy! 


Heparin-Induced Thrombocytopenia 
.

Just Keep Drinking...

So, with my exciting history, I have a tendency to dehydrate very easily and very quickly. It's been a couple of years (knock on wood) since I've ended up hospitalized for fluids, and I don't miss it. I've learned to catch it and reverse it fast. However, that wouldn't be the best idea while being pregnant...heck...it's just a bad idea anyway! I am one of those people that hates water. It gives me a tummy-ache, and I easily go days/weeks without drinking water. On top of that, I'm NEVER thirsty, so I don't drink much of anything in the first place. Well, I fell pretty ill in the matter of about 8 hours the other day. I thought I felt it coming, but I realized I was dizzy and having a hard time concentrating. Whoops. I tried and tried to get fluids in, but I was too late. Luckily, I didn't end up needing the ER or hospital. I did see someone at my work, and they helped me get the right things before I got worse. Thankfully, I was feeling better that day. It's ironic, though...last week before all of this, I was at Walgreens and saw this cute water bottle on sale for $2.50. I bought it and measured (realistic for me) amounts and wrote the goal times on the bottle. I only did times for the days I work, since those are my most "fluid-depleted" days of the week. I was in a class and noticed that I'd surpassed my goal by hours, so I took a pic to prove it to Jim. lol 

.

Decisions, Decisions...

Neevo DHA

Retail:
$298.47 (We pay $74.62) for a 90-day supply

Mail-Order:
$277.17 (We pay $69.29) for a 90-day supply

Okay, so that's not TOO bad....but I would have to supplement with 3mg more of Folic Acid...at least that's what my perinatologist recommended.  I don't know how much that is, but I doubt it's very high.

Heparin

This is a bit more tricky, as I would have different doses for each trimester. He said 5,000 units for the first, 7,500 for the second, and 10,000 for the third. I would need two doses, one every twelve hours. They also said that I would need more lab draws at least bi-weekly, if not weekly with Heparin vs. Lovenox, though they couldn't give me an explanation as to why. Anyway, trying to price Heparin on the insurance website is a bitch, and when Jim called the company to infer about the prices and doses, they were quite confused. They told him it would be somewhere around $10 a month, but I don't buy that, since the first lady he'd talked to said Lovenox would be $16 a month, then someone else said that it was $16 per injection (just a little over). Uh huh. Heparin is a bit more dangerous and has more side effects, from what I've read....so I'm not sure on what to do. I want what's best for my well-being, as well as the baby's. If anyone has had experience with Heparin or both, please let me know your thoughts and experiences! I would love to hear about the differences.

Here's a chart I'd found regarding Neevo DHA, which kinda sums it up. I found it on the Neevo DHA Website

The mutation C677T makes it so that the body cannot fully process folic acid. L-methylfolate, which is the active form, is available through Neevo DHA, which decreases the chances of homocysteine levels increases. However, my perinatologist said that I would still require additional folic acid. Since discovering this little prenatal vitamin, I'd found that MANY women, some of whom have at least one of the mutations, are not covered with insurance for this and had to pay 100%, which is VERY expensive. I'm glad that it isn't TOO bad for me, however, the Lovenox would be a deal-breaker. I don't feel like planning my own funeral anytime soon....so I'm still pretty irritated with the insurance companies right now. Hopefully we will find a better suited one for us next year and we can start planning more. :S


EDIT:
Here's my original post with the Lovenox prices...just to give you an idea if you didn't already see it...

"So, I looked into the prices for Lovenox. This is the quote I received from the insurance company:

Mail-Order:
Brand-$3084.26
Generic-$2523.29

Retail:
Brand-$3073.33
Generic-$2462.50

These are for 3-month supplies. Out-of-pocket for us would be $600, no matter what. Gah!"
.

Lovenox Stings!!!!

So, I looked into the prices for Lovenox. This is the quote I received from the insurance company:

Mail-Order:
Brand-$3084.26
Generic-$2523.29

Retail:
Brand-$3073.33
Generic-$2462.50

These are for 3-month supplies. Out-of-pocket for us would be $600, no matter what. Gah!

"If You Don't Want to Get Hit By a Truck, Don't Play in Traffic"

At least, that's what the perinatologist said yesterday. :) I went in there with my head held as high as I could hold it, which, being only 5 ft. tall, doesn't amount to much...BUT...we walked in together, as tough as we could be, knowing that the doctor's recommendation could either embrace us or crush us. For the past several weeks, I've not been able to discuss or even THINK about babies without becoming tearful and nearly having a breakdown. In fact, the longer we waited for this consult, the harder it became for me to contain myself in such situations...it got to the point where I had to remove myself from conversations when people were discussing pregnancy, newborns, babies, etc. It was heartbreaking, yet, I know what it's like to have to be on the other side of the fence...frankly...it's annoying as hell. I didn't want to be that person. I didn't want to be the one who couldn't tolerate being alongside or even in the same room with those having discussions about such and having to either have a breakdown in the middle of the room or leave the room, making it "obvious" (at least to me) that I have a problem. Finally, the day has come...we will have some kind of relief...the only question was, which way were we headed?

Gathering my medical history wasn't as bad as I'd imagined...I'd spent several weeks (no joke) calling hospitals, offices, clinics, etc, trying to send out my history from everywhere (current) to this perinatologist. It was quite the battle with a couple of places, which, unfortunately, were very much needed with this consult. Thankfully, the nurse let me know that they were able to get all of my records (whew). My husband made some type of smart-ass remark while walking behind me. Had I not been tearful the entire walk throughout this clinic, I may have turned around and backhanded him (joke, for all of you APS people out there). :) The nurse seemed to be pretty cool and calm, given my history, which I understand, there are many other people out there with much more extensive histories than mine, but given my age, I am still somewhat surprised with my own history some days. The doctor came in right after her, and I knew immediately that I'd made the right decision in choosing him (whoa...not used to that feeling!). After gathering my history and our current situation, he said that he didn't feel that we shouldn't keep from TTC based on that. He did say that, given my history, of course I am at higher risk (duh), and if you didn't want to get hit by a truck, don't play in traffic, in essence, if you don't want to risk clots or miscarriages, don't get pregnant. Another duh. :S Of course, I would be on Lovenox from start to almost finish, depending on the delivery. Obviously, I would have to be closely monitored. Given my history of MTHFR and the Spina Bifida Occulta, he suggested that I take Folic Acid (yet another duh). Pretty much everything he said, we knew....however, he DID give us something we didn't have...No, Dorothy, not a heart or a brain....haha Couldn't resist. He gave us reassurance that, just because I have this history, with or without our current fertility issue, does not mean that we should completely scrap the entire idea of conceiving and go straight to adoption. He did say that he does not deal with fertility (yeah yeah, we know), so that's something we will have to keep looking at. However, he did say that I cannot be on hormones (yet another DUH), so that will make it interesting. I asked him about seeing Genetics, and he suggested that we hold off....I already know that I hold a 50% chance of passing FVL to my child, however, MTHFR is a different story. I believe he said that it would be a 25% chance....given that I have compound heterozygous, I'm not sure I understand that. I asked him about my neurologist wanting me to have an MRI and MRA to rule-out Arnold Chiari, and if I did, would it make a difference. With a HUGE relief, he said that it would not matter either way. THANK YOU!!!!!!!

My husband said that, while I didn't smile throughout the appointment, he saw something in my eyes and face that he hasn't in a long time, which apparently resembled that of a smile. The doctor asked me what my current thoughts and feelings were....as I'd been holding back tears the. entire. time. I struggled for words....I wasn't sure if I was in total shock, or relief, or just in overload, even though the information given is what we'd already known, it was still uncertain until handed over on a silver platter by the perinatologist. It's hard for me to believe that this doctor doesn't think it's absurd for me to get pregnant when my own OB/GYN does, and I did express that to him. Fair enough, she's not the expert. However, I've also done my own research...finding women in similar situations losing babies up to 36 weeks, having 8 miscarriages, suffering from HELLP Syndrome, giving birth at 24 weeks. I'm not sure I could live through any of that. When I mentioned that to him, he answered with, "not everything is related to FVL or MTHFR." Fair enough. I suppose we are well-prepared, and we will be as careful as possible, but given my history and my known susceptibility to become dehydrated at the blink of an eye, it makes me worry JUST A TAD.

After that appointment, we had to jet over to Neurology. EEG was done...normal. Duh. :) (sounding like my stepdaughter). I explained to the doctor that I have no desire to continue with Topamax, as it cannot be taken while pregnant, it's expensive as hell, and it's making my hands and feet tingle to the point of pain. He followed me down the road and said to taper down and even off, if I choose to do so. In the meantime, he suggested some vitamin, which I have no intention of taking, as it cannot be taken while pregnant either. He also mentioned that I'd refused the MRI and MRA. Yes, yes I did. They're expensive, and I've had too many already, thanks. Besides, if I do have Arnold-Chiari, what's my treatment? Deal with it. I wouldn't qualify for surgery, and even if I did, I wouldn't go through that hell. He then proceeds to tell me that he'd looked back at some old ones, and he doesn't think I do have Arnold-Chiari...um...didn't I ask you to do that months ago, and you told me that you couldn't??? Whatever. Money saved, cancer-prevented (hopefully). Whew! He DID say that he believes these headaches to be migraines, which could be related to the history of thrombosis or my FVL or MTHFR, or may not. Either way, I've dealt with it for my entire life, and I'll continue to live with it. I refuse to be on the meds that I've been on...they make me feel awful, they're killing our bank account and insurance, and I can't be pregnant while on them, so what's the point in getting used to them?
So,  I'm starting to "somewhat" get back into wanting to baby-plan again, with the exception of still worrying...we still run some high risks, and we have a long way to go. Hopefully, we have some of the tools we need to get started. I'm glad I have the perinatologist that I do....I really do like the doctor, the staff, and the clinic.  Here's hoping!

<3

Tomorrow....

Tomorrow is the big day....and all it is is just the perinatology consult, but I'm still apprehensive. :( I have no idea which way the pendulum will swing...they may tell me we have a good shot, they may tell me we don't stand a chance and it's too dangerous. Also going to neurology for a follow-up after my consult, but that's on the back burner for now. Happy thoughts are welcomed!

Getting Anxious

I'm beginning to wonder if I should even bother going to perinatology at this point. I go back and forth, thinking about the dangers I'll be putting myself and the baby through, and if the baby did make it, what could be passed on from me. I'm just having one of those pity party days...but it's lasting for much longer than a day. It seems like anytime anyone mentions us having a baby, I feel my face turn hot and my eyes water up...I'm not sure I can go through with this. The more stories I read about with women in similar situations, having multiple miscarriages...some as late as 36 weeks...I am not built for that. I'm just not.

 :(

Keeping Our Heads Held High...

Despite being told by my OB that she would rather we not get pregnant, we still want to see all of our options. She recommended three perinatologists and suggested that one of them have a care conference with my hematologist, as my health history is quite complicated. Well, as I've previously posted, my hematologist has point blank refused to care conference about one of his patients, so I've taken matters into my own hands. I've started calling perinatoloy myself, leaving messages and talking with the nurses about my history and seeing where to go from here. I was able to get through with one very nice nurse. She said that they have patients with FVL and MTHFR (even Compound Hetero) frequently, but when I put the spin of my history of clots in my head, my possible Arnold Chiari, and the POSSIBLE need for a sperm donor, she suggested that I make an appointment for a consultation with one of the doctors there that my OB had suggested. She also said that their office was very familiar with my hematologist and worked quite well with him (really? That makes one of us), so I made the first available appointment that Jim would be able to come with me, which would be in June. I'm hoping they'll say that it doesn't matter whether or not I have Arnold Chiari and I won't need to have more scans, but I have a feeling that won't be the case. I also see Neurology again next month (was supposed to follow-up with them for a 1-month follow-up over 2 months ago. Nurses are the worst patients, ya know!)...hopefully I can get off this Topamax since it clearly has done nothing for me except make my hands and feet tingle. I'm anxious to hear what the perinatologist says...I'm sure they've seen the worst of the worst...I'm hoping that I'm not in that category...I'm not ready to give up yet.

.

Isn't That Why You Get Paid?!

So, I've been trying to contact my Hem/Onc doctor for a week (once again) regarding getting together for a care conference. My OB wants me to get him together with a perinatologist and discuss whether or not TTC would be realistic or just plain stupid considering my risks, as well as discuss whether or not if I should further investigate if I have Arnold Chiari Malformation or not, since I'm not too thrilled with the idea of having more MRIs done. I left two messages explaining all of this, leaving two numbers to reach me. One day, I was not at home, so I left the other number to reach me at, and I stated very clearly on the message to call me at that number, not on my cell, as I needed to speak with them directly. Instead, they leave me a freaking message on my cell. Morons. Anyways, they do not even acknowledge the MRIs and Arnold Chiari situation. Okay, beautiful. I'll continue harrassing you. She continues to say that I am to find a perinatologist and have them call the doctor, as he "does not do face-to-face." Are you EFFING KIDDING ME? Isn't that why he gets paid six figures and I don't? I'm sorry, but I'm a nurse, and I've been in many care conference for my patients, whether I wanted to be or not (not that I was ever opposed to...just sayin'), and I don't get paid nearly half of what he gets paid. My doctors are not on the same page, and my OB has asked for a care conference regarding my future well-being, and you are REFUSING?! Oh, and this is my NEW hematologist? Well this is just effing great. Now what? Do I start searching for a new one? The jackass that accused me of "doctor hopping" is somewhat tempting me to start! I am very frustrated at this point, and frankly, I am completely lost. I feel very bad for my OB...I keep calling her for support, and she isn't the one who will be in my care, as she is a nurse practitioner. She keeps pointing me and I keep walking where she tells me. Hopefully I can get somewhere soon, but at this point, I'm fed up with the healthcare in this city. I've seen just about everyone that is available to me, and let me tell you, I am nothing less than disappointed. Even my husband was pissed off and shocked. I had him listen to the voicemail, just in case I was mistaken. I am very hurt by this...how could a doctor do this to their own patient? UGH! LISTEN TO YOUR DAMN PATIENTS! Mark my words....when shit hits the fan, watch out.

 :)

More Diagnoses=Empty Cradle :(

This blog is taking somewhat of a turn...it started off as a DIY wedding planning blog, to a family-oriented (when I had time to update it) activites blog, and now it's going to be a TTC, or perhaps an adoption blog, as well. I never, in a million years, would have thought that I wouldn't be able to just bring a child into this world, and if you know me from years before, nah, we won't go there. Anyway, I will start from the beginning and break it down as best I can. Through research, I've found that I'm not the only woman with the combination of diagnoses that I have, so my hope is to reach them and we can help each other.

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.