How Low Can Ya Go?

Last week I got a call from Dr. Duncan's nurse at Emory telling me the results of my latest Protein S labs, which were taken at 10weeks gestation. My "Free Protein S" had fallen to 19 (!!!!), down from 25 at 7weeks gestation and roughly 48 pre-pregnancy. "Normal" is considered to be somewhere between 60-150ish.

We knew this was coming, since Protein S naturally falls during pregnancy (even for the "Normal" folks). So while we were expecting them to fall, we were never expecting them to fall this low. The hematology nurse who called freely admitted she's never seen numbers in the teens before, which I also expected, but even so hearing it out loud didn't feel too good.

I managed to confine my mental freak-out to just a day or two, and now I'm just taking comfort in the fact that God's got me covered. And the icing on top of that cake is knowing that Dr. Duncan is monitoring me very closely, and there is no doctor more qualified for this scenario than he is.

In fact, I'm feeling so confident, that I'm now taking bets on just how low my Protein S will drop before this is all over with. We expect that it will continue to fall as the pregnancy progresses, the lowest point being at the end of the pregnancy. So now it's just a game of "How Low Can Ya Go?" .... without triggering a disaster, of course. Anyone want to take a guess? We need to award a prize to the person who gets closest without going over!

I'm thinking if numbers in the teens are nearly unheard of, would I just be a complete freak of nature if I had a single digit number? If so, then that's my goal. Just another chance for God to show off!

BRING IT ON PROTEIN S!!

Tonight I'm reminded once again what a complete miracle Gracie is. I'm always calling Jamin my "miracle boy" and eager to share with anyone who will listen how God brought him here. But knowing now that my Protein S drops to unheard-of levels in the first trimester of pregnancy ... and knowing that I was clueless and unmedicated for my entire pregnancy with Gracie ... and knowing that we both survived ... seriously blows my mind!

I'm also resolving not to whine anymore about those stupid Lovenox shots. Yes they hurt and yes I absolutely hate injecting myself every night, but since they are keeping me alive right now I suppose it's only fair to stop complaining about them.

Thank you God for Lovenox!

Fast Forward!

A few weeks have passed since my last post, I've been generally whiny and feeling an overwhelming lack of energy ... to the point that the very thought of blogging was enough to make me tired. Blahh. Here's a condensed version of the last few weeks:

I've had three more ultrasounds ...... the 5th being at the Perinatologist office due to sudden onset of heavy bleeding around 9 1/2 weeks. Dr. Mann was not available, so I saw one of her colleagues Dr. Matsumoto ... or as she calls him: Dr. HOT-su-moto. She calls him this because, well, he's kinda young and hot. Not really the guy you want to see when you have to explain how you have blood gushing from your nether-regions. Yeah, so that was a pleasant experience. The good news is that he was able to very clearly see that the blood was originating at the cervix -- not the placenta -- so that was a best-case scenario for us really. Disaster averted.

My 6th ultrasound was done about a week later, another "quickie" scan at Dr. Garcia's office. And the 7th was last week, with Dr. Mann during our nuchal translucency screening. It was so fun to see the baby again ... wiggling and spinning and waiving. The best part was that I got excellent results from the screening and all seems to be progressing just as it should. I was only 12w1d at the time of the scan, but even so Dr. Mann offered to take a peek at the "special parts" to try and determine the gender. She squinted and strained and did everything but stand her her head ..... but alas, just too early to tell. She said if we'd had one more week it would've been so much more clear. I knew ahead of time that the chances of being able to determine the gender at 12wks is super slim so I really wasn't surprised or disappointed. I see her again in 2 1/2 weeks and she promised we would know for sure by then! :) I am still hoping for team PINK, all the while recognizing I get absolutely zero say in the matter and will simply have to take whatever is given to me! James says he is cheering for team Pink, but has a "feeling" it's a boy again this time. Only time will tell!

I saw Dr. Duncan (aka Dr. Genius) about two weeks ago for my hematology appt. My bloodwork from the previous appointment (taken around 7wks gestation) came back showing my Protein S levels to have plummeted down to 25. It is normal for Protein S to decline naturally during pregnancy, but it's definitely not normal for it to drop this low. We expected it, though, since the exact same thing happened at the very beginning of my pregnancy with Jamin, when my level was about 24 at week 7. The concern comes from the fact that my Protein S will continue to fall throughout the pregnancy, so then it becomes a game of "how low will it go???" All we can do is continue to watch it and adjust my Lovenox dosage as needed. But oooohhh how much better I feel this go-round just knowing I am in the hands of one of the most competent hematologists in the country and he is watching me closely. He took another 800 bottles of blood from me at my last visit and I am still waiting on those results. His nurse is actually supposed to call me tomorrow, fingers crossed.

I am now 12w5d and beginning to have some painful cramping. I saw Dr. Garcia today for my regularly scheduled appt ... he says I have a high # of white cells in my urine so he's speculating the pain is caused by a UTI, aka bladder infection. He sent off a culture of course, but the results will take 48hrs to get back to us so in the meantime he's already started me on an antibiotic just in case. Tonight the pain is literally worsening with each passing hour, so I'm beginning to feel a wee bit nervous and praying it's really just a UTI and not something more worrisome. I began having contractions with Jamin around week 16, and with Isaac at week 12 so of course my mind is already running away with that possibility. He also gave me a pap while I was there today (just because it was time), and so now I'm bleeding profusely again because my stinkin cervix apparently is so frail it begins to bleed if the wind blows too hard or if someone stares at me too long. Doesn't take much.

So I'm back to where I started: feeling generally whiny. Now you see why I took a break from blogging?? :)

The newest member of "Team Wren" ....

..... is a jolly 'ol Scottish lad named Alexander Duncan, or as I've nicknamed him: Dr. Genius. Seriously, this guy is insanely brilliant. And he has spent the last 40+ years researching and treating thrombosis patients just like me.

Most hematologists are actually practicing as an oncologist/hematologist, this was the case with my previous doc, Dr. Munjal, and 95% of other hematologists in practice. These doctors must have a wide range of specialty .... they primarily treat cancer patients and as such they usually specialize in bone marrow, stem cell transplants, and the like. The result is that these doctors, though considered "hematologists", only end up with a basic working knowledge of the less-common hematologic issues like Protein S Deficiency. Dr. Genius, on the other hand, does zero oncology. And he does not specialize in a wide range of hematology problems .... instead his entire career has focused on basically TWO THINGS: 1) Congenital and Acquired Thrombophilia (yep, that's me); and 2) Complications of pregnancy due to hemostasis (hello! me again). He literally sees more thrombosis patients in a week than most "specialists" will see in a year (or at least, that's what he told me!).

He is widely published, highly regarded as an expert, and patients travel from all over the country to see him. Not to mention, he's kind of like a big teddy bear with his irresistible Scottish accent and his grandpa-like demeanor. How fortunate I am that he practices in Atlanta, and moreover that he is now officially the newest member of "Team Wren". I would love to brag and say that I researched this guy and sought him out for his clinical specialty, moving mountains in order to score an appointment with him ... but that's not so. The truth is that I landed in this guys' lap without even knowing it, all of which was God's work and I was oblivious at the time. I consider this the first miracle of Pregnancy #4, and the details are just too cool not to share....

On May 13th I was having my annual "pow-wow" with Dr. Munjal, my hematologist of almost 4 years. Outside of pregnancy, I just see her once a year to check on my numbers and make sure all is well. My last visit with her had been shortly after Jamin was born (April '09), and at that time they actually scheduled my next visit for May 13, 2010. So I literally had this appointment written on my calendar for a full year. Mid-way through our visit, Dr. Munjal began telling me some things about Protein S Deficiency that totally didn't make sense to me .... things which were 180 degrees contrary to everything she had told me for the previous 3.5 years, and things which were completely contrary to everything I'd read and researched.

This was not the first time I'd had a bad experience at her office. Recall Nurse Know-Nothing advising me to "google it" last year when my Protein S #s were dangerously low. There were other little things too, which bothered me from time to time but I ignored them b/c the thought of switching doctors was too overwhelming.

So here I sat in her office that Thursday afternoon, completely dumbfounded and confused by these crazy things she was telling me, feeling like I was in the twilight zone or something. Always being one to wear my feelings clearly on my face, Dr. Munjal obviously noticed my displeasure and finally asked if I wanted a second opinion. I thought for a moment and then agreed to her offer.

She proceeded to refer me to her own partner, at a second office .... gee thanks. When I caught on to that I told them NO THANK YOU, I would like a referral to someone outside of this practice please. The nurse suggested Emory, and I said fine.

A few moments later I was sitting at the receptionist's desk while she set up my referral over the phone and faxed all my medical records over to Emory. I asked her the name of the doctor I would be seeing, she told me she didn't know -- it was a large group with many doctors and they would decide who wanted to see me once my referral went through. I left there annoyed at my experience with my doctor of almost 4 years, but feeling grateful that I would be getting someone else soon who would probably be better in the long run. I wouldn't really need to see them for another year anyways so in the grand scheme of things it wasn't a super big deal.

TWO DAYS LATER I DISCOVERED I WAS PREGNANT.

And immediately it became a super big deal! So as I laid there on the bathroom floor that Saturday night bawling my eyes out, with all the fears hitting me like a ton of bricks, it suddenly occured to me: I don't even have a doctor right now!!! Could there possibly BE a worse time to be in-between hematologists?!? Of course, you know the rest .... I completely freaked out because, well, I am Kristi afterall, and that's what I do.

Monday morning I got a call from a lovely lady at Emory who had received my referral and wanted to bring me in sometime in July or August for a consultation. I sheepishly explained ...... "well, something major has changed ..... uhhhhh ..... I'm pregnant." She managed a polite "Oh my!!" and immediately understanding that July or August would not work, she scheduled me to come in within a matter of days. Just as we were hanging up the phone I asked her the name of the doctor I would be seeing. She gave my Dr. Genius' name .... which I scribbled on a piece of paper .... and as soon as I hung up with her I consulted my good friend, Google. When I pulled up Dr. Duncan's profile on Emory's website I nearly fell outta my chair. Here I had just obliviously fallen into the lap of one of the most highly esteemed experts at precisely the time when I would be needing him most.

Instantly it hit me that God had orchestrated this entire thing, and for the first time in days I stopped crying and felt a bit of peace knowing that God was in control of this entire pregnancy and He already had all the details figured out for me.

Dr. Duncan is the Medical Director of the Special Coagulation Laboratory at Emory University Hospital. He is also the Medical Director of Emory University Hospital's Hemapheresis Unit. And now he's been appointed as the Hematology Director of Douglasville's own Team Wren, which I'm certain has to be the single most minuscule accomplishment of his career but nonetheless I'm quite thrilled to have him!!

Team BLUE!

Holy crap we're having a BOY!!! We found out yesterday during my first trimester screening. I was shocked that we were able to see "it" so clearly, I was only 13w0d!

But alas, there on the screen we saw the unmistakable "toilet shot", and the ultrasound tech announced quite confidently that we are indeed having another son.

I'm feeling a little shocked, and if I'm being honest - a wee bit sad. I've been hoping for another girl, mostly because I have such a close relationship with my own sister and I wanted that experience for Gracie. And also for selfish reasons - I feel like emotionally this will be much harder for me to handle since it's a boy. I worry that I will forever be comparing him to Isaac ... the way he looks, the way he talks, the way he runs, the way he laughs ... wondering if that's the way Isaac would have been. I was hoping it would be a girl in part so I wouldn't have to deal with some of those emotional complexities.

BUT .... once again God's plan is His own and I am getting on board. It will be an adventure shopping for blue for a change! I've already started peeking at cute little blue nursery decor online - though I don't have the guts to actually purchase a single thing!

With the gender discovery, of course, has come the inevitable battle over the perfect name. And once again, James and I can't agree on a single thing! We always have the hardest time with this! James is set on the name Cash, in honor of his pseudo-hero Johnny Cash. I think the name is cute ...... FOR SOMEONE ELSE'S KID. But not for mine. Can't explain it really other than to say it's just kinda weird. Gracie loves the name because it makes her giggle, so last night the two of them were double-teaming me, begging "puleeeeeeze let us name the baby Cash!". I told James no, I don't like it, the name is weird, and not to mention -- what in the world could we possibly use for a middle name since it's so strange, I mean what goes with Cash? Gracie came rushing in from the other room shouting, "REGISTER!!!!". So apparently at this point my child's name will be Cash Register Wren. Fantastic.

In other news .... my latest hematology tests have me breathing into a paper bag. Went to the hematologist last week, though for some reason I got stuck with the nurse practitioner rather than the doctor. Won't be making that mistake again -- she was completely clueless. But my Protein S numbers have plummeted dramatically, hence the bag-breathing. Recall that I have an inherited heterozygous Type III Protein S Deficiency. Sometimes it's referred to as Type IIb rather than Type III. In a nutshell, there are three types of Protein S measurements: "total", which measures the actual amount of protein in your blood, "free", which measures only the amount of protein that isn't already bound to other blood components, and "functional", which measures how well the protein is actually working (irrespective of the amount present). My disorder, Type III, is a functional deficiency, which means my free and total #s are both normal but my functional #s are abnormal. For instance, my functional levels have hovered around the upper-40's to low-50's over the last two years (normal is considered 60-120), while my free and total numbers have always stayed in the normal range.

At this office visit, Nurse Know-Nothing reports to me that my functional #s are down to 24. (I have honestly never even *heard* of numbers this low before.) And to top if off, she tells me I now have a free deficiency as well - down from the normal range to just 27. When I asked her if this will cause a major problem, she shrugs and says "I'm not really sure, but as long as you keep taking your lovenox then I think you should be okay". Well that's super reassuring. Convinced I'm going to drop dead from a pulmonary embolism as soon as I get in my car to drive home, I asked her if it's possible that pregnancy would artificially drop my numbers so dramatically, at which point she tells me - again - she's not sure but I could google it if I wanted. Yes, that's right, that was the advice given to me from the licensed Nurse-Practitioner at the hematologist's office, the folks who are supposed to be knowledgeable specialists in blood disorders. I was furious ... I take time off of my day, arrange childcare for Gracie, sit in your waiting room for an hour and a half, pay my $40 copay, and you want me to GOOGLE IT?!?!?

Needless to say, I'm looking for a new hematologist.