No, it's not the swine flu, but we're both sick!

Bad news; AC is sick again, and worse yet, I appear to have caught it! I was holding out so well until last night, when I think sleep deprivation got the better of my immune system. It was so hot last night in our apartment (82 degrees I think!) even with the air conditioning blasting (I almost wrote ac just now, but decided that would be confusing! :) The only way I could sleep was naked with an ice pack wrapped in my nightgown and placed against my body and the overhead fan on. It didn't help that my stomach wasn't feeling great as usual these days. Joy of joys, I woke up at 2:30 and couldn't get back to sleep until 6:30! The only good part of the whole experience was that Ziggy became quite active, and I enjoyed feeling and seeing the little guy move around.

I didn't just lie there the whole time though. I got up to drink and eat and surf the Internet for a while until I started to feel drowsy again. I managed to sleep till about 9am, and when I woke up, the soreness in my throat hit me. That was AC's first symptom too. I can tell that it's a virus because whenever I get a viral infection, my chronic bacterial infection recedes temporarily. Pseudomonas is a notoriously weak (but persistent!) bacterium that cannot survive well in the presence of other infections, bacterial or viral. It tends to hide out until the other infection disappears, at which point it reappears with a vengeance.

Sorry to be graphic, but normally my sputum is a dark yellow to green color. Now it's a pale yellow to clear color, which is almost unseen in me! My cough is also more dry and hacking and less productive than usual, which is also generally a sign of viral infection in me. AC's infection appears to have become bacterial, judging by the color of his sputum, which is a pretty common occurrence; an initial viral infection weakens your immune system, allowing a bacterial infection to move in. If that happens to me, I may need to pay an earlier visit to my pulmonologist. I was hoping to be able to avoid taking any antibiotics during my pregnancy, but if I have to, obviously I will. We have a quiet weekend of rest and recuperation planned. I just hope it's not too hot in the apartment, otherwise we may need to escape to the coolness of the bookstore (although really, in our state, we shouldn't be out and about). Here's hoping for a quick recovery for the both of us!

Pregnancy and Kartagener's Syndrome

So far I haven't written much about how pregnancy has effected my Kartagener's Syndrome, and really that's because it hasn't effected it much at all, or at least not nearly as much as I thought it would. I experienced shortness of breath and the feeling of needing to take deeper, fuller breaths in the first trimester, actually almost as soon as I became pregnant. But now that I'm in the second trimester, that feeling of breathlessness has gone away. My mother even commented that I no longer sound out of breath on the phone.

Now my lungs seem even better overall than before I became pregnant. My most recent PFT (Pulmonary Function Test) a few weeks ago showed improvement from the last one I had in November, my oxygenation was 100%, and my new Pulmonologist (Dr. A, whom I really like) said that my lungs sound good and I seem to be very healthy. She has some antibiotics in mind in case I do become sick, but for now, she said to just keep doing what I've been doing and focus on prevention. I have had a pretty easy pregnancy so far, but of course that may change as I get further along. As Ziggy gets bigger and my uterus expands higher into my torso, it may exert some pressure on my diaphragm and ultimately my lungs, leading to more difficulty breathing. The humidity here isn't great for my lungs of course, and Dr. W did recommend that I stay inside in air conditioning as much as possible during the summer when it's especially humid. I don't think that will be a problem--I can't stand hot and humid weather, and neither can AC.

Even though generally my lungs are a bigger concern to my health, it's my ears and sinuses that have been giving me more trouble since I became pregnant. Many women develop "rhinitis of pregnancy" due to the swelling of tissue and increase in blood volume, and I definitely have that, although it also hasn't been as bad as I expected it to be. My ears have probably given me the most trouble, mainly because there's not anything I can do once they become blocked. I went to my new ENT here when I first arrived in Little Rock (Dr. H, who is also great--I have been very happy with all of my doctors here so far), and he not only suctioned out my sinuses (which always feel so good afterward), he also decided to put new tubes in my ears since he said that would be the only way to drain the fluid that had accumulated. I've had countless ear tube surgeries as a child, but this was the first time I'd had it done while awake. It was a bit unpleasant but not really that bad--he anesthetized the eardrum locally, made the holes, drained out the fluid, inserted the tubes, and I was good to go. He said to just schedule an appointment asnytime I feel like my ears or sinuses are blocked, and he'll suction them out for me. When I left his office, it was amazing, because I could finally hear for the first time in weeks. I had been walking around half-deaf because my ears were so stopped up with gunk. AC was getting really annoyed because I kept asking "What? What?" to everything he said, and we had to turn the sound way up whenever we watched anything.

Anyway, here's my daily regimen of prevention to keep myself and, by extension, Ziggy going strong throughout the pregnancy:

Exercise 30-60 minutes daily
Vest treatment 30-60 minutes daily (unfortunately at some point I'll probably get too big to continue using The Vest)
1 ampule Pulmozyme nebulized daily during vest treatment
1 ampule 0.9% saline nebulized daily during vest treatment (this will soon be switched to 6% saline per Dr. A's recommendation)
Advair 250/50 1 puff daily a.m.
Advair 100/50 1 puff daily p.m.
ProventilHFA inhaler 1-2 puffs up to 4 times a day as needed for wheezing (used rarely)
Nasonex 1 squirt each nostril twice daily
Astelin 1 squirt each nostril twice daily
Saline sinus rinse 1-2 times daily

Armour Thyroid 45 mg daily
Rainbow Light Just Once Prenatal One Vegan Guard Multivitamin 1 tablet daily (I highly recommend it since it's gentle on the stomach and doesn't cause constipation)
Twinlab Dr. Greene Omega-3 Fish Oil Softgels--1 softgel containing 270 mg EPA and 180 mg DHA twice daily
Twinlab Calcium Citrate with Magnesium and Vitamin D citrus flavored chewable wafers--2-4 wafers daily containing 500-1000 mg Calcium, 250-500 mg Magnesium, and 200-400 IU Vitamin D (they don't upset my stomach like calcium carbonate chews do)

Week 11: In which I make the Acquantaince of Dr. W

A week ago today I had my first appointment with Dr. W, who seems really nice, knowledgeable, and pretty flexible. Even though he didn't agree that I needed to continue the progesterone suppositories and shots until 14 weeks (he says he usually discontinues progesterone supplementation at 10 weeks for his patients), he said I should continue whatever plan Dr. M laid out for me, since he was successful at getting and keeping me pregnant, and we don't want to mess with that. He also didn't agree with me being on Armour Thyroid, but again deferred to Dr. M on that. He did want to measure my level of TSH though, and when it came back low the next day, I was told to halve my dose from 90 mg to 45. I wonder what Dr. M would have to say about that! I'm sure he wouldn't be pleased, but at least they're letting me stay on the Armour Thyroid at all. I always felt like the dose was maybe a little high; plus, my plan is to taper the dose and get off the medication altogether by the time I give birth so I can safely breastfeed.

Hmmm, so what else happened at the visit? I urinated in a cup (not sure what they were measuring there), had my weight taken (up 4 lbs since the last time I was weighed at a doctor's office in November--I don't weight myself at home), had blood drawn, talked to Dr. W and his nurse about my Kartagener's Syndrome (they've actually had a patient like me before, and seem to know what it entails), and best of all, had an ultrasound. This was my first abdominal ultrasound, which was so much more comfortable than the vaginal ones. As soon as the ultrasound started, I saw little Ziggy jumping and bouncing around in my uterus! It was amazing! I didn't realize s/he was already moving so much--I wish I could feel it, but I guess that wont happen for a few more weeks at the earliest. I found the experience of seeing Ziggy moving a lot more powerful and emotional even than hearing the heart beat--it kind of hit me even harder that I really do have a baby inside me that's growing every day.

Anyway, Dr. W said it's a "beautiful baby," which I guess means everything looks good and is where it should be at this stage. He also said there's no sign of bleeding, so I guess it must have reabsorbed! Yay!!! He measured Ziggy three times to try to get a week 11 measurement (since I was exactly 11 weeks at the time), but kept coming up with 10w6d. So Ziggy was measuring a day behind, but Dr. W said it's not a big deal. Even so, I have been worrying about it a little and trying to make sure I eat every few hours. I read in one of my pregnancy books that babies get better nutrition and grow better when you eat frequently, rather than eating a few large meals a day. Plus, I find that I get hungry every few hours, so it seems to be working out.

Dr. W said I should return in 5 weeks when I'm 16 weeks, at which point we'll discuss doing a blood screen for chromosomal abnormalities, so my next appointment is on May 21. I really hope AC can make it, so he can see Ziggy dancing around too! I wanted him to be the there this time, but unfortunately he had a simulator :(

Before I end this post, I also want to update on the progesterone in oil situation. After stressing the whole weekend that I was going to miscarry because my progesterone would drop too low, on Monday I called to ask if they could measure my progesterone just to make sure the level wasn't dropping too low with me just being on the suppositories. The nurse told me that Dr. W didn't see the point in doing the blood test--basically what would we change if the numbers were low? I said I would go back on the shots if absolutely necessary. I also said that Dr. M had wanted my level measured a week after I stopped both forms of progesterone at week 14. She asked what the point of this was, and I told her that he would want me to continue the progesterone for the remainder of the pregnancy if my levels were below 20. This surprised her. She said they didn't have any patients on progesterone for the whole pregnancy, and that in general they no longer do progesterone monitoring since it had not proved clinically useful. She did say that Dr. W was willing to order the test for my peace of mind.

So I'm going in on Monday to have blood drawn, and they should have the results for me on Tuesday. I really hope my progesterone is at a decent level. I wonder if I can convince them to test me again at my next appointment after I discontinue the suppositories in two weeks. They probably already think I'm a difficult patient, but I don't care--better to be difficult than lose a baby, right? I tried to impress on his nurse how different it was to go from an infertility clinic, where you're seen every week and closely monitored, to a regular OB, where you're seen every 4-5 weeks, and they seem to take a much more blase attitude toward things. I also told her several times that the reason I was so insistent on careful monitoring is that if for some reason I lose this baby, I can't just get pregnant on my own in a few months like another women might. I'll have to do IVF all over again (well, fortunately the frozen embryos will make it easier), but it will still involve going back to NY and going through almost everything again. She seemed somewhat sympathetic, but I still got the sense that they view me as a drama queen or something.

Anyway, to end on a positive note, here are the week 12 sonogram pictures of Ziggy:

More Good News

The cast is off! But more importantly the blood work today showed my progesterone level at 33.3 and my hCG at 6933! And best of all, I got to see the yolk sac on the ultrasound. It didn't look like much (just a black oval), but it was exactly where it's supposed to be in my uterus. Because of my increased risk of ectopic pregnancy (due to my PCD), Dr. M placed the embryo low in my uterus when he did the transfer so it wouldn't float back into the tubes. And it worked! Little Ziggy (that's what AC wants to call the baby until we know the gender :) is right where s/he's supposed to be! I return next Tuesday when we should be able to see the baby and hear the heartbeat! Dr. M says he'll release me in 3 weeks, maybe even sooner if everything looks good. The sonographer was surprised that my ovaries had already returned to their normal size, but I guess they bounced back fast because I didn't hyper-stimulate at all.

Even though originally I had planned on staying on the East Coast during the pregnancy because of the highly recommended MFM in New Haven, AC and I have decided that it's just too hard to be apart for so long, especially when I'm pregnant. So the new plan is for me join AC in Little Rock once Dr. M releases me and be followed by an MFM there. I've already started looking into some doctors there. Since AC's training has been delayed so much due to his eye, it looks like he'll be in Little Rock until July or August. Most likely I'll go with him to Albuquerque as well, where I'll deliver the baby in early November.

As for AC's eye, it's been acting up again (basically he's been on medical leave for over a month now), but at least the military doctors finally started to take it seriously and referred him to a corneal specialist. He's having eye surgery on Thursday and will be in pain (the same severity as when he first injured his eye) for about 5 days. At least he'll be given prescription pain killers. I wish I could be there to take care of him but Dr. M said definitely no flying until we see a good strong heartbeat.

Anyway, that's all the news for now. It's hard to believe I'm almost 6 weeks pregnant! Crazy!

25 random (and boring) things about me (as seen on Facebook)

1. I am a worry wart. Case in point: I've spent the last few days worrying that no one would tag me in a "25 Random Things" note and grant me the opportunity to reveal my soul to the Facebook community.

2. I had never broken a bone until last week when I fractured my right wrist after slipping and falling on some ice. Currently typing this with my left hand.

3. I've never had a cavity, and I hope to keep it that way. Flossing is a regular part of my daily routine.

4. I have situs inversus totalis (all of my internal organs are reversed, so I'm like the mirror image of a "normal" person). It's part of a larger condition called Kartagener's Syndrome or Primary Ciliary Dyskinesia, a rare autosomal recessive genetic disorder which effects the cilia lining the respiratory tract and fallopian tubes. Basically it means I have lots of lung, sinus, and ear problems. I'm infertile as well.

5. I've had lung surgery, sinus surgery, and more ear surgeries than I can count (see above). One of my earliest memories is of going into surgery with my "My Little Pony" clutched tightly in my hand and then waking up and vomiting from the anesthesia.

6. I suffered from anorexia when I was 12 and 13 and stopped menstruating for over a year. I ended up being hospitalized for more than half a year because of complications with my lungs from malnutrition (see above), which left me with permanently damaged lungs. I also have osteopenia (low bone mineral density) as a result.

7. I met my husband on the steps of Memorial Auditorium at Stanford's Admit Weekend when we were both 18 and still in high school. We started dating at the beginning of Freshman year and have been together ever since. We got married on June 17th, 2006. He's the absolute best thing that's ever happened to me :)

8. There is a photograph of me sitting on Richard Feynman's lap when I was 3 somewhere in our family albums. Sadly I have no memory of this momentous occasion and my proximity to greatness. Feynman dated my grandmother and used to play with my mom and aunt when they were little.

9. I wore braces for 3 years from 5th-8th grade, had them put on and taken off 3 times, and had 3 orthodontists who all insisted that the previous doctor had had no idea what he was doing. I still wear my retainer to bed every night.

10. I never imagined I'd marry a man in uniform and be a military spouse. So far I like it. Ask me again when he deploys for the first time.

11. I'm an atheist and a liberal democrat, which means I keep my mouth shut and my opinions to myself a lot of the time when I'm around military people.

12. I'm an only child who always wanted siblings, which is why I plan to have at least two kids.

13. I had my ears pierced in 8th grade but never wear earrings because they make my ears infected. In general jewelry makes my skin break out in a rash, which is why I gave up wearing it altogether. I'm probably allergic to nickel.

14. When I was 8 years old, I was almost kidnapped/sexually molested by a creepy guy with a goatee while on a ski trip with my dad in Vermont. Understandably, my mom was really mad at him for leaving me alone while he caught the last ski lift up the mountain.

15. My parents got divorced when I was 4, and my mom remarried when I was 6, but I saw my dad a lot growing up since he lived only an hour away in NYC. I've come to realize that my parents make much better friends than marriage partners.

16. Things I am ashamed to admit: I never learned how to touch type. I can't whistle. I've never had an orgasm (sorry, TMI, I know!). I tend to be critical of others. I hold grudges. I've forgotten a lot of my Russian. I take people for granted. I'm prone to jealousy. I have a bad habit of picking at pimples.

17. I have never smoked or taken any illicit drugs, and I almost never drink. It's not for any moral reason; I just can't stand the taste of alcohol.

18. Because of my Kartagener's Syndrome, I have a really bad sense of smell. Chances are if you ask me how something smells, and I give you a reply other than "I can't smell anything," I'm probably lying.

19. I was a lacto-ovo vegetarian for 8 years. I started eating fish on a trip to Russia, and since then have been a "pescaterian," although recently I've considered going back to strict vegetarianism.

20. My weight fluctuated a lot during high school and college but finally settled down once I got married. I've been told that marriage "suits me."

21. Most of the women in my family (especially on my mother's side) are well-endowed. Sadly I did not inherit this trait.

22. If I could have any superpower, it would be invisibility.

23. I find a lot of food to be too sweet or too salty for my taste. My husband totally doesn't get this.

24. I recently received my yoga certification from a mean and crazy 70 year old woman in Corpus Christ, TX whom I hope to never, ever meet again.

25. I was born in New Haven, CT, but grew up in Stanford, CA and Stamford, CT. Since marrying Andy, we've lived in a bunch of hot places: California City, CA, Montgomery, AL, Del Rio, TX, Corpus Christi, TX, Little Rock, AR, and Okinawa, Japan is next!

Of MFMs, REIs, and IVF

(Written on Dec. 19th at the Ski Sundown Mountain in New Hartford, CT)

Although AC had planned on going snowboarding in Massachusetts, it wasn't until today that he finally got the chance to do so. The weather was not cooperative, and we were completely unprepared for the storm; with no snow tires or antifreeze and frozen windshield wipers that seemed to make the visibility worse rather than better, it was a miracle we made it in one piece! Numerous cars, police vehicles, and ambulances littered the road as evidence of the treacherous conditions. What should have been an hour's drive ended up taking nearly three hours, but AC was determined to make it to "Ski Sundown" before sundown (actually it was impossible to tell if the sun had already set by the time we arrived, since it had been dark all day!).

Now AC and my father are happily skiing and snowboarding while I'm relaxing here in the ski lodge in a chair by a window, watching big fluffy flakes pour out of the sky. I would almost describe it as peaceful save for the endless cacophony of teenagers surrounding me.

We had our consultation with the MFM (Maternal Fetal Medicine specialist) today at Yale, and wow, what a difference a good doctor makes! After our terrible experience with the REI (Reproductive Endocrinology and Infertility) in Corpus Christi, our meeting with this doctor was a tremendous relief. Although incredibly accomplished, he's completely unassuming and has a pleasant, open manner. Moreover, he's extremely knowledgeable. Perhaps most impressive was that he had actually prepared for our meeting by researching Kartagener's Syndrome, reading my file, and thinking about my case.

After taking down a brief medical and family history, he recommended that we meet with a genetics counselor to discuss our options, even if we choose not to undergo preimplantation genetics. Thankfully my cystic fibrosis genetic test was negative. As for Kartagener's, he said it's unlikely that I received two recessive genes for Kartagener's, one from each parent, as I had long believed. More likely, I received one recessive gene from one parent, which combined with a random, genetic mutation. Apparently, an average of fourteen genetic mutations arise in each generation, which means that, even if AC isn't a carrier for KS, our child could still end up having it.

The question now is, do we do a genetic consult? And more importantly, do we do preimplantation genetics, which is not only very costly, but doesn't even guarantee that the child will be free of the genetic defect the embryo was tested for? My gut feeling is to meet with our REI (the doctor who will be performing the actual IVF cycle) and find out what he thinks.

When I asked about travel during pregnancy, he seemed to think I would be able to travel both by car and plane, as long as I walk around every hour to prevent blood clots from forming in my legs. He also mentioned that pregnancy would start to effect my lungs immediately due to the changes in hormones, and that it's impossible to predict exactly how I'll respond to this "stress test". The good thing is I'm young and relatively healthy. Overall, he was very optimistic that the IVF would work quickly and that I would have a fairly easy pregnancy, although he did reaffirm the importance of a singleton pregnancy. Apparently, IVF increases the risk of identical twins from about 1 in 300 in the general population to about 1 in 100, so even if they implant only one embryo in my uterus, I could still end up with two! I really would prefer not to have to address the issue of a fetal reduction, but I guess I'll cross that bridge when I come to it. Apparently, with IVF, there's also a twofold increase in heart defects, from about 2-3% to 5-6%, and I've also read about slight increases in the risk of other birth defects, like cleft lips and palates. I don't really want to think about these possibilities, but I guess it's better to be informed.

As for the IVF itself, SH has been a busy bee as usual and managed to obtain all the medications I'll need for the cycle for free! She is truly amazing! Despite our differences and issues in the past, I really appreciate everything that she's done for me. Apparently the REI also plans to give us a good deal on the IVF cycle since he's friends with SH, so this may end up costing us less than we had anticipated.

Overall, I'm feeling pretty confident about this whole process. Only a couple of weeks until my first meeting with the REI when hopefully I'll have a much better understanding of what the IVF cycle entails and more to blog about. In case I don't get a chance to post in the next couple of days, have a Happy New Year! I'll be back in 2009!

Inaugural Post

I've been meaning to start a blog for a while now but several things (mainly procrastination and a general sense of "who in the world would want to read what I have to say anyway?") have prevented me from taking the plunge. Fortunately, one of the assignments for my current class on web site design, building, and programming (Libr. 240-03: Information Technology Tools and Applications) is to set up a blog. In my case, I plan to actually use it.

Since AC and I move around so frequently and have friends and family scattered across much of the country (and even the world), this blog will serve as a convenient and easy means of staying in touch with loved ones and offering them a glimpse into our rather mundane lives. Moreover, since AC and I will be separated more often in the months and years to come, given his recent airframe and location assignment (yay for MC-130P Combat Shadow flying out of Kadena AB!) and our decision to attempt IVF this coming year (more on that to come in a later post), it will be nice to have this blog as a means of staying connected, not to mention as a chronicle of my IVF exprience.

When AC spent a quarter studying abroad in Moscow, I found his blog invaluable in allowing me at least some involvement in his world. What with the extreme time difference and high cost of overseas calls (not to mention that the satellite kept dropping our calls after exactly 29 minutes--yes, we timed it!), it was often the only contact I had with him. Our upcoming move to Okinawa next November will also necessitate an easy way for us to share photos and updates with family and friends on the other side of the globe.

Lastly, as someone with a rare genetic chronic illness (Kartagener's Syndrome/Primary Ciliary Dyskinesia), I hope that this blog will provide some insight for those who share my condition or want to learn more, especially as regards KS/PCD, IVF, and infertility.