Sunday, February 20, 2011

If I had only known...

...what I know now.

It's been about 2 months since my previous post and I can't believe everything that has happened...and, most importantly, NOT happened.  While yes, it is true that I am only 32 and I "have some time left", I am also impatient, type-A, anxiety ridden and ready to have a baby.  A recipe for disaster.  I know (or at least I now know) there are hundreds of thousands of women out there who are in far worse positions, have spent crazy money, gone through painful procedures, and experienced far deeper heartache than me, so I do feel lucky so far.  But I am just now tip-toeing in to the "involuntary infertility" ring and I do not like what I see.

After visiting Dr. Goldstein, my very first encounter with an infertility doctor, I was horrified not only by him, but by the discovery of a possible ovarian cyst.  The doctor was just creepy and, despite my good looking prelim paperwork, was already discussing IVF with us.  He conducted my sonogram and reported a fluid-filled cyst, gave me some very vague information, and sent me on my way.

I immediately decided to find a second opinion.  I visited and am now currently under the care of Dr. J Michael Putman at Reproductive Endocrinology Associates of Dallas, who I have mixed feelings about.  My initial consultation was quite different than the first in that Dr. Putman is very kind, respectful, humorous, and seems to have a plan.  He was selling IVF hard, at least not on the first visit.  I got an ultrasound and he said everything looks good.  A brief aside: I am in good health, meaning I am never, ever sick.  I am in decent shape at 5'6" 118 lbs., I have never had any kind of infection, disease, condition.  My family is in good health as well, with no cancer, heart disease, genetic disorders, or history of (ta-da!) infertility of any kind.  I have a cycle that you can set a clock to, periods at 9:30am on the 28th day and ovulation on day 12 without a hitch.  Besides a miscarriage after 4 weeks in August of '10, no history of a single female problem whatsoever.  All that being said, I look GOOD on paper. 

Dr. Putman talked me through "the plan" and explained the blood tests and diagnostic testing I would undergo.  Sounded good, though I knew nothing about what any of that was, and I was ready, completely convinced I would get nothing but a clean bill of health with a strong suggestion to keep trying...

WRONG.  After an clean HSG and several ultrasounds to monitor my follicles, eggs, uterus, egg reserve and ovulation cycle, things looked good.  My hormone levels looked good.  My thyroid levels looked good.  My husbands numbers looked even better with double the quantity of good swimmers at high volumes (lucky).  The "only" thing was a "slightly" elevated Antinuclear Antibody, dual-pattern Homo 1:80 and Speckled 1:160.  I was told the levels were low, but that I needed to do further testing for Natural Killer (NKa) to make sure I didn't have some crazy cell that attacks an egg and prevents it from implanting or worse, attacks and rejects a developing fetus.  Wha?

Fast forward two weeks later and countless hours scouring the (GD) Internet and I was officially freaking out.  Once surprised and frightened by a cyst, I found myself in tears over the news of positive ANA levels, even though they are low.  And Natural Killer cells?  That just sounds awful.  I knew in my heart that's what it was.  I got the blood test and two days later found that they were, indeed, elevated (11.5) and whatever the hell that number means also, consequently, means that I have to go back and, yet again, speak with Dr. Putman for a $20 co-pay.  In our last session, he was already talking to us about IVIg in the event NKa's were positive and now, knowing the price tag, it's not going to be a pretty conversation.

I am horrified by how little information the medical community actually provides.  I completely understand that they, like everyone else, has to make a living, but it's a racket.  And the staff?  Ex: the nurse called me after getting results of my initial hormone level testing to let me know that "all my tests came back negative", to which I replied," they did!?!", to which she then replied, "yep".  And I thought that was that.  Well, it wasn't.  I know doctors can't possibly speak to every patient about every case, but it seems a bit counterproductive, maddening, irresponsible, and psychosis-inspiring to have a nurse call, give you a positive/negative result with no reference number, ratio, etc and no ability to answer a single question about said results. 

Now I am dealing with trying to get answers, like so many others.  It seems that that every new website, message board, community, blog offers more research, opinions, and options regarding some other condition in conjunction with something else, T regulators, CD56+, LIT, infusions, heparin, $25,000 out-of-pocket, out-of-network, costs with no real guarantee.  I am visiting yet another RE (yes, I am currently doc hopping) who looks promising at the SIRM center in Dallas.  They are supposedly phasing out IVIg and relying more in the Intralipid Infusions (thank you, Jesus, one little glimmer of cost-effective hope), so I am crossing my fingers that, with slightly elevated numbers like that, we find nothing else and I can be on my way to mommydom in no time.  My luck has never served me that well, so I am cautiously optimistic, to say the very least.  Meanwhile, I am embarking on a strenuously bland diet with what looks to be a long list of supplements to accompany it, in hopes of lower this god-awful NKa.
Am I annoyed?  Yes.  Am I sick about the possibility that I am actually (gulp) infertile??  Yes. 
Is everyone around me pregnant, some with multiples, some not even trying, some with NO business WHATSOEVER (my judgement call, I own it) procreating?  Yes, yes, yes.
Is every doctor I've seen shoving IVF, IUI, multiple prescriptions and injections down my throat and hopefully my uterus?  Yes, indeed.

I'm also wondering if it would be possible to trade and  just get that pesky fluid-filled cyst back...

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