Saturday, February 26, 2011

Three short months

I checked the date yesterday and I was shocked that it was exactly 3 months after discovering my second pregnancy had ended.  It blows me away that it has only been such a short time, I’ve changed so much, my situation has changed so much that it feels almost like years have passed.

I’ve traveled 1000s of miles in this time, and I’ve spent one month each in drastically different places, India, California and now New York.

My first month was in India. It was the happiest of these past 3 months, which is mindboggling given that it was immediately after my loss. But---being with family was going into this incredibly comfortable cocoon. It’s the same one I will return to, to fight out this battle of trying to create another human being.

The next month was spent in California, with the stress of moving cross-country while dealing with my new reality. 

The third has been spent in NYC, and here it is the stress of settling into a new place.

I’m just amazed at the speed at which my life has been moving, and the utter lack of control I have over anything.  Its also just bewildering how much I’ve learned in this short time. The most shocking revelation was that my baby had Turners syndrome. Then came the vitamin D story. Then finally came the PCOS story.

Ever so often, you learn something new, often entirely by accident. You start to tug on one chain, and it takes you someplace you had never intended to go. Sprogblogger had recommended Dr. Barad at the Center for Human Reproduction (thank you, sprogblogger!).  Absolutely by accident, I ended up looking for papers Dr. Barad had authored, and found a pretty darned interesting one.

I’ve remarked on this on ‘The science of infertility’ page : I found it very interesting that a lot of woman who had PCOS also had anti-thyroid peroxidase antibodies. I could never think of or find a link.
This paper I just found says, YES, there IS a link between the two, and it comes down to this gene on the X chromosome, called FMR1.

Just another thing for woman having these 2 issues together to check out, if you feel up to it. However, I should add, if you do discover you have this, I think it would end up being a face-palm moment because I don’t see what you can do to fix this. But still, having this information has to give you better clarity in figuring out what your path forward is.

Despite the fact that I have both PCOS AND thyroid issues, my microarray results (gotten a while back) suggest I’m normal for this gene- still, I have to confirm that with an expert. Also, I have no issues in getting pregnant whatsoever, and this paper is all about low pregnancy rates in women mutant for this gene.

But yet, I do have a little piece of my X chromosome missing. Interestingly it is the cytoband adjoining the one that has FMR1. And I’m starting to read more and more that some of the X-linked abnormalities contributing to fertility issues- I think I’m going to have to see a top notch geneticist, just for my own peace of mind.

It never ends.

And a lot can happen in one day, let alone 3 months. I should not be so surprised  (nor unhappy) on account of  the volume of change in this short time.

Stasis sucks.  Rapid change, although disconcerting, is better.

Tuesday, February 22, 2011

The good, the bad and the ugly (with an update and a request)

Prior to November 2009, I think I had seen a doctor maybe 4 times in my life. Most little infections and all things medical were managed by my mom, and she was my mom, even when she had her doctor's hat on.

Then, I started the TTC process. So began a year of a ridiculous number of blood tests and visits to a variety of doctors. I've encountered disinterest, callousness and  sheer laziness: doctors who could not be bothered to look at anything other than the most basic things and got annoyed if you asked them to do even a little bit more.  But I've also encountered the opposite. Some of my doctors have been genuinely kind, caring and empathetic. Others have been sharp as whips, keep up with the literature and most importantly, are interested in the little details which sometimes can be the most important ones. Some of them  (all of the smart ones actually) managed to combine the two (kindness and competence) and these are the best!

I've written up bad reviews  for the worst offender and good reviews for the nice one. But still, websites like Yelp can hide your reviews if they are too positive or negative. So this post, where I name my doctors, their practice and  review my experience with them, has been a long time coming. My blog is also google-search able so anybody trying to decide whether to go with these doctors will also have more information to help make that choice.

The Good

My RE in San Diego, Dr. Gabriel Garzo at Reproductive Partners Medical Group.
I love this practice, overall. The doctors actually do the inseminations themselves!  Their bottom line is just how much they can help their patients and they are genuinely kind on so many different levels. Dr. Garzo listened to my history carefully and ordered that really important test for anti-thyroid antibodies, we would have never caught that problem without that.  I've sent him many papers and he actually takes the effort to read them. The nurse coordinator there who dealt with me (Lindsay Ray) was just wonderful. Lets face it, I'm not the easiest patient to have. Medical practices are not used to having a patient who knows so much and hence demands that they go in so many different directions to investigate all possibilities. She dealt with all my requests for tests, my going off on multiple tangents with amazing patience. She always came through, always tried her best to followup on test results even if it meant staying late. I was very impressed by her professionalism.  Kudos, all the way around.

Dr. Robert Lind, an Endocrinologist with New York University.
While most doctors today do pretty much the same things and follow, more or less, similar treatment philosophies, what sets the really good ones apart from the run-of-the-mill ones is an ability to listen to the patient, care for the patient and see them as more than a face in a parade walking in through the door. Another important quality is the keeping up with latest scientific literature, and to be able to judge to objectively. This doctor had the best reviews from the endocrinologists my insurance let me go to, and he more than lived up to them. I went to because I wanted somebody to manage my thyroid during pregnancy. He took an extremely detailed review on my history, covered every single avenue when it came to testing,  and showed that he was extremely well versed with the latest studies and judged them sensibly, and more than anything, was willing to carve up time from his day, to follow up, to listen to me, to accommodate me as a patient. He responds to my emails. This is a very small thing, but its important. Another doctor, an RE, also at NYU, on my emailing him with a question, wrote back, just to tell me to call his office with the very same question, and not email him on the subject(!!!). Doctors and their egos. Dr. Lind is different, he is the best kind of doctor. I recommend him wholeheartedly.    

 The Bad 

Dr. William Hummel at San Diego Fertility Center
This was, sadly, the first practice I went to. Lets get the minor offences out of the way first- you never see the doctor after the initial consult, and all interactions are through nurse practitioners. The doctors love to delegate everything to somebody else- ultrasounds, IUIs everything short of an egg retrieval is done by nurse practioners. 
The more major offences:
Laziness: They do not re-wash thier IUI-ready sperm. Most clinics actually do this, and there is a reason for this, that there could still be prostaglandin contaminants which will make you cramp horribly after an IUI.  After my first IUI, done with this clinic, I was curled up in bed wishing I had a hot water bottle, the pain was fairly bad. My second IUI, done by Dr. Garzo- I was fine all day after.
Utter lack of interest and sheer callousness: 2 weeks after my first miscarriage, I had a query about cycle parameters (estrogen, length of luteal phase etc and corresponding egg quality). It was not a question the nurse could answer, and I asked her to forward to Dr. Hummel. One week later, I get a reply by mail saying basically this." I am a very busy man and do not have have time for such questions. Luckily for you, there are lots of other REs in San Diego, go to one of them." I've saved the letter because I could not believe my eyes, it was incredible. BUT--that was the biggest favor he could have done, I then ended up with Dr. Garzo.
Utter lack of attention to details and incompetence:  In the initial workup  this clinic had asked for had included a TSH test. That value had come back at 2.74. Now, any RE or OB-GYN worth his salt will know this- a TSH of over 2.5 is not good for pregnancy.  This is a paper that 3 different doctors I've seen have mentioned to me, it is a hall mark study. This practice was either unaware of this paper or ignored my test result - if they had followed up and tested me for anti-thyroid antibodies at that point, who knows, I might have been sitting with a 1 month old baby right now and not writing this sad entry. Ironically, this doctor has written a book on miscarriage and successful pregnancy- guess what features prominently in pregnancy loss list of usual suspects??? Anti-thyroid antibodies.  This guy is the main reason I'm writing this post. Accountability is much called for here.

Dr. Aniruddha Malpani, an RE at the Malpani Fertiliy Clinic in Mumbai, India
Although I ended up having a baby ( a result of an IVF cycle where I designed my own protocol from start to finish), every time I trusted this doctor and went with his flow, I paid very badly for it.  My first IVF where I trusted him to design the protocol ended very badly with a horrible response, and going through a surrogacy managed by him was one of the most tension-fraught experiences of my life, and my daughter was born with a respiratory infection that resulted in a 4-day NICU stay and one week of IV antibiotics. His behavior was also far from professional and was frankly jaw-dropping: he refused my requests to transfer my embryos and sperm to another clinic, and instead demanded that I pay him storage fees for continued storage, or he would destroy them (No, I am not making this up). Four embryos and two of my vials of donor sperm have now been destroyed.
I have written about my experiences in detail here, and offer alternatives fertility treatments in Mumbai.

The Ugly

Dr. Andrew Hull at Repromed Department of UCSD.
This was the perinatologist who saw me during my second pregnancy. I was actually first struck by both his and his colleague (Dr. Maryam Tarsa's) brusqueness and shortness, but that is ok.  It would be icing on the cake if you were kind and interested in me as a patient but that is not really a requirement.

Why he is on this list is because of what happened after we found out my baby's heart had just stopped. After the initial shock (during which utterly no kindness or empathy was shown, its like, whoops looks like your baby no longer has a heartbeat) I was just standing there saying F___ no, this cannot be happening again. At this point he stops me and says, " Please do not swear in my presence". To this, I replied something to the tune of, my baby just died, what do you mean I cannot swear right now? The words 'I don't care' were left unsaid, but he just repeated- "please don't swear again'. Don't know what to say about this guy, you can only shake your head. I was going to let it go, but I think this story deserves to be out there.

Thursday, February 17, 2011

Conflict (warning-dark)

Are you ever in the state that there are two absolutely opposing feelings vying for supremacy in your brain? Probably not, but its something I've been dealing with right now.

The first set of opposites are my reactions to the loss of my 2 babies. There is one part of me that almost instantly accepted these losses and came to terms with them.  This part of me is cool, rational and pragmatic.  It knows that from the beginning of time, thousands of billions of lives have flickered out before even completing organogenesis.  Miscarriage is one the truest cases of saying that the pain is only for the ones left behind. I'm aware that what has been a catastrophic event for me was an event that did not even register for my babies.  They were many months away from  anything resembling true awareness.  So they moved on without even know where they had been, or what had happened to them. I pray that they are in good places, wherever they went. But they are on their own journeys now, and it is one removed from mine.

Then there is that other emotional part of me. The part that still bursts into tears when I read about other people's stories of loss. The part that can't bear that my babies, the ones I never got to know, are gone.  Though I can write paragraphs about the rational side of me, I cannot even begin to address its emotional counterpart.

Thankfully, the rational part of me holds sway most of the time. After the initial spates of grief, this pragmatic part of me has prevailed mostly. But the emotional side unexpectedly has been dropping in the past few days, and I've been getting to see polar opposite sides of me in action, one rapidly following the other. Its been interesting, albeit exhausting.

The second set of conflicting feelings is now about pregnancy. There is a part of me that so badly wants to try immediately. Knowing that you have an excellent chance of getting pregnant within weeks is just heady. Sometimes I want it so badly I can taste it. But on the other hand, the thought of pregnancy just fills me with terror, for lack of a better word.  The other day, I was sitting and just thinking about the process...the positive pregnancy tests, your body changing instantly, your bladder immediately shrinking to pea-like proportions, waking up multiple times a night, those hunger pangs, and within 5 minutes, I was bawling. The first time I went through that, even the annoyances made me smile, the thought that life was growing inside me made everything ok, I'd be smiling as I was stumbling out of bed for the 4th time that night.

Now I just think that life will grow, all those amazing changes will happen, just to end in death again. I'm so very morbid I've been thinking about what to do in case I have to abort for the 3rd time. I do not want to have a 3rd  D&C because I'm worried about Asherman's syndrome. My Indian RE recommended misoprostol because he does not think repeat D&Cs are a good idea...the thought of going through the pain this pill induces makes me shudder. Although this thought would have seemed mindbogglingly weird a few months ago, I can say that D&Cs are relatively easy.  Somebody just sticks an IV in you, you wake up after,  physically its like nothing ever happened . I've gone through my 2 losses with only the emotional scars.  So yeah, I'm going to spend quite a bit of this year cringing at the thought of misoprostol.  I don't know what to do there, that is another giant area of confusion and conflict.

So for the next several months, I'm going to alternate between longing to be pregnant, cringing at the actuality of it, and hand-wringing while considering my alternatives in the worst case scenario. Goody.

The amazing thing about blog writing is that you can say all of this to yourself, it won't help you one bit. You come out here, you type out the crazy conversations you have been having with yourself, and just somehow, in some bizarre way, it helps.

Thank you all for reading. I know most of the people who pass through this blog never ever comment.  It would be nice, if for once, some of you delurked! Not the best post to ask you to do it, I know.

Saturday, February 12, 2011

PCOS or not?!?!

On the medical front, I'm still ridiculously confused, I'm still pondering that million dollar question, do I really have PCOS? There are cases of PCOS that go undiagnosed for years because nobody runs the right tests. In my case, I've run all of them (sometimes in triplicate) and I'm still left scratching my head. This disease is COMPLICATED!!!

My San Diego RE( Dr. G) who first remarked that my ovaries looked polycystic, does not really think that I have PCOS. He thinks my ovaries look 'multi-cystic'. Translation- I have about a gzaliion follicles in each.

Courtesy of Google Images
My antral follicle count has consistently been in the 30s. My repeat AMH (because I never believe in just one test reading) was even higher, at 5.6 ng/ml.  You can look at these results from 2 different angles- from one angle I'm just blessed with a pretty abundant ovarian reserve, above average for age 30.  Look at it from another angle, and yeah, it looks like PCOS.

I've read some crazy complicated papers on how to diagnose PCOS.  There are 3 big players here-
  • The ovarian parameters (high AMH and follicles) ---- big check mark here
  • Ovulatory disturbances -----none. Ovulate beautifully, and in ridiculously reproducible patterns, every month.
  •  Hyperandrogenism (greek for too much male hormone):  3 things to check here- DHEAS/ DHEA, testosterone and physical characteristic of hirsutism. 2 out of 3 qualifies you, I think.
Overall, you have to have at least 2 out of these 3 (ovarian parameters, inability to ovulate and hyperandrogenism) to qualify for a PCOS diagnosis. I have the first and definitely don't have the second. And as far as the 3rd goes......that is where I'm in limbo, awaiting a decision.

About hyperandrogenism:
I don't have high testosterone. I've tested this 6 ways to Sunday- conclusion- my testosterone is at the lowest end of the normal range.
I DO have high DHEAS (over 200 in 2 seperate tests)
The tie breaker is......hirsuteness. That is the condition where you are hairy like a man.  I'm sure everybody has seen somebody suffering from a really bad case of it one time or the other and knows what I'm talking about.  I'm NOT like that, not by a long shot, so if you had asked me a year ago whether I was hirsute, it would have been an absolute no-brainer to say no.

However, I recently came across this way to 'score' if you are clinically hirsute. Its called the Ferriman-Gallway score and it looks at body hair patterns not just on the face, but all over your body.

A picture speaks a 1000 words, so go here to see what it is all about. 

The papers say that if you have a Ferriman-Gallway score above 6, you might be considered hirsute. If you are above 8, you most definitely ARE hirsute. I looked at my own body hair patterns and I was like gee, I might just be in the 6-8 range, or maybe even higher but its really hard to evaluate one's self. If this comes through then we can conclude, yes, I just may have PCOS.

But right now, I'm waiting to pick an insurance, and then just find a doctor who will help me determine if I qualify for hirsutism. I usually get rid of body hair on a very regular basis, now I'm forced to keep it till I see a doc. UGH.

Quite a few medical professionals (including Dr. G) have asked me: how does it matter even if I DO have the mildest form of PCOS in the world, since its clearly not affecting my ability to conceive??? Well, because even in its mildest form, it CAN potentially be deadly.  It can stick a foot out and hamper fertility in MANY different ways.  PCOS can not only interfere with your ability to conceive, but can mess things up well after conception- ridiculously complicated post on that will be written one day in the future.

Monday, February 7, 2011

I'm a bad blogger, but...

Hope at Invisible mother, Jenny at Try, Try again and Randi at Fervently Wishing have very kindly nominated me for a few blog awards. Thank you ladies!!! I've done this blog award deal a couple of times so I've done the describe myself bit before- its here.

I wish I had the enthusiasm to find the blogs to nominate. I've been trying to find it for a few days but sadly, its just not coming..

But seriously... everybody out here writing, who have faced or are facing adversity,challenge and pain and growing from it, who are sharing their experiences and reaching out to other people in pain deserve these all of these awards. The one thing all of you REALLY deserve is squealing bundles of joy that enthusiastically create the most smelly diapers in the world. I give you all these awards and more than that, a prayer that all your quests are soon fulfilled.

In other news

  • Completed my first week in NYC- wake up everyday with legs bitterly protesting all the walking I made them do- but loving it!

  • Science related: I've updated my 'Science of infertility' page- I was flabbergasted to read that Vitamin D can actually fix insulin resistance in some people.. maybe this is the link of this vitamin to PCOS(caused by insulin resistance), one of the most common causes of infertility other than advanced maternal age or structural problems?

Tuesday, February 1, 2011

In New York.......

I moved!!  Here I am, staring at a beautiful 19th floor view of the Empire State Building. In other words, pretty darned nice digs and my commute to work is an elevator ride, so no complaints there.

But the transition is not easy. There is the freezing weather issue and the fact that I'm feeling sorry for myself because I don't know a soul in the city.

So many things I can do to meet people- sign up on eharmony (dating provided me sufficient social activity for nearly 6 months after I moved to San Diego and didn't know a soul, so I can always try that here),  join local societies,  find out when the local SMC chapter meets up...but here I am, not doing ANY of those things and just moping while staring at this incredible view. Of course, it takes months to truly settle into a city and I've been here two days and I'm feeling sorry for myself because of the lack of instant gratification.

This blog is so totally my version of cheap therapy..every time I'm stressed/upset about something, just putting it out here makes me feel better and realize what an idiot I'm being--love you guys!