Yo - What's the Haps?

It's a tale as old as blogs. I've been MIA. I've even started posts offline, only to never finish them. (Ok, technically it was only one - BUT I've thought of a bunch of others.) I've lurked. Not on purpose mind you, but the feeder app on my iPhone doesn't do a great job of posting comments and so neither do I of late.

Ya, ya, ya - so what's the haps? Current status: GREAT. All scary tests have come back normal. YAY!!!!!

We are at 21 weeks and 4 days and everything is lookin' good so far.

Surro is having major stress with other family stuff, but she is holding up like a champ. She's a GD saint and all I can say is that I wish a plague on the horrible person causing her pain - except that plague would hurt other people I love, so I guess I really don't. But maybe I do because that person always hurts other people and she's sure to hurt the people I love again. Shew. Life sure is complicated.

We manged to live through our announcements. First we told family and any close friends that weren't already in the know. Ok - that's a lot, but the response was generally good. Oddly enough I didn't really get much response from my Dad's side of the family that lives here in the US (Dad died when I was 3), but got great response from the ones in Sweden. All of hubbinez's family was super-duper-uber excited. So was my mom's side of the family - but most of them already knew.

Next we made the dreaded FB post. That actually went WAAAAYYYYYYYY better than expected.

At first I posted this video:

Mostly because I love Min Pins and this cracked me up as a baby announcement. Apparently no one viewed it or "got it" but that was ok because seconds later...

.... hubbinez was so excited about making the announcement (he had been telling people all week) that he made me do a joint word post, where we hit the POST button at exactly the same time. Because we are corny like that. It went something like this:

"On Mother's day it is fitting that we make our announcement that we are expecting twins. This would not have been possible if it wasn't for another wonderful mother, my SIL <insert name here> . Unable to carry our biological children myself, and after unsuccessful tries elsewhere, she selflessly offered to be our gestational carrier. Words can not express our gratitude over this incredible gift."

Hubbinez was as giddy as a school boy.

I haven't told my work yet, but that's because there has been a snafu with converting me from contractor status to employee status. Technically I am now an employee, but everything isn't final in all the systems, so it makes me nervous. I'm going to feel like an arse when I have to tell them about taking time off - which incidentally the due date is 1 day off from my boss' new wife. I'm sure he's going to freak, but because of my last disaster with getting fired when I told them about starting a family, I want to at least be protected by law this time.

In other haps - I am doing a sleep study next week. I've always had problems with not feeling like I get enough sleep (even when I do!), so no time like the present (ie., pre-twin birth) to try and figure this stuff out. We are off to a good start. Initial blood work from PCP showed that I have a big vitamin D deficiency.

That's a big one with sleep and immune problems, which makes sense since I've been sick so many times in the last year I lost count. With Vitamin D the doctor is looking for any number above a 29. Mine was 18. :-/  Apparently all that sun block wasn't so great for me. Except the whole wrinkle thing. I'm ok with the past trade off, but had to find another option for the future. Yay for supplements! 2000 IUIs a day! At least the past year has prepped me for that.

Srsly, I have to be the only girl whose doctor tells her to go get some sun WITHOUT sun block. Ok, maybe not, but it's not something I have ever heard before. And so I went out in the sun the other day without sunblock on anything except my face for the recommended 15 minutes. Then I slathered on the sunblock. The glare from my legs are still intact!

That's it for tonight. I need to post right away, sans editing, lest it fall by the wayside. Holy crap - it's 11:30pm. Gotta go take a bath and go to bed. Night all!

Amniocentesis and another 2WW.

From: http://www.webmd.com/baby/twin-pregnancy-types

Thursday we had our amniocentesis. What a nightmare. It was really important for us to have one, but holy crap that stuff is scary.

The doctor certainly didn't help. It was that same irritating douchey specialist from the other week.

I guess I should back up a bit since I've been MIA.

The cell-free DNA test ended up coming back inconclusive. That's right, the test that the doctor recommended and then we found out afterwards that the manufacturing company doesn't always recommend for multiples or donor eggs (and since this is surrogacy, my eggs are considered donor) - came back inconclusive. Shocking. They wanted my SIL (our surrogate) to come back in for another. She called me and gave me the update. The nurse was really pressuring my SIL to come back in for another try at this test that is only partially covered by insurance.

After thinking about it, I told my SIL not to get it. It didn't make sense. Why should she have to take extra time off from work for a test that was not going to tell us anything different than the amniocentesis that we had already decided we were doing. Why should we pay even MORE money for a test that didn't give us anything different? Why should we put her through an unnecessary poking that could very well end up being inaccurate or inconclusive. I told her to not worry about going back for the test.

And then she called back. The nurse was EXTREMELY insistent that she come back for this test. At this point I because very irritated (not at my SIL, but at this Dr.'s office.) It was clear that they wanted us to do this test to try and convince us against the amnio. I told my SIL not to stress about it and I would straighten everything out with the Dr.'s office.

Ready to rage war, I started making phone calls. First I called our old fertility clinic ACRM. Our nurse that took over our case when our original nurse was promoted was nothing short of awesome, and I wanted to ping her for her advice. Then I walked outside my office, took a deep breath, and called the specialist's office.

The nurse that spoke to my SIL was not available, but another person in the office was able to call me back fairly quick. That conversation did not go as expected. Actually - it went quite well. The nurse (I think she was a nurse - but we will call her one anyway) was awesome. She is similar in age to me and she confided that she would consider the amnio if she was in the same situation. She explained why the other test was inconclusive and agreed that if we were going with the amnio, then it was not necessary to get the cell-free DNA test - especially so close together. We talked for quite awhile and she restored my faith in this part of the process.

Hubby and I decided that maybe it would be better to have the amnio done at an office closer to us. Maybe staff at a Decatur/Atlanta office would be more professional that some of our previous encounters at the Fayetteville office (like the bad nurse my SIL talked to). Heck, I'll bet the Fayetteville office, even though quite modern and large, has never even seen a mixed Indian/Caucasian couple, much less one using surrogacy. It would be the same doctor (groan), but hopefully no sight of other staff members with similar issues. (Atlanta is completely different than most of the rest of GA.) We would still do the regular appointments closer to where my SIL lives, but we felt safer with the amnio in a more diverse setting.

Fast forward to Thursday: amnio test day. Meep.

We knew that my hubby would be about 15 minutes late due to work constraints, but we really wanted the time to be more convenient for our SIL and let her set it. So when the doctor came in after the initial ultrasound, hubby had not arrived yet. The doctor started off with "are you sure you still want to do this?" and I had to resist the urge of having a fit. Both SIL and I answered in the affirmative.

The doctor then explained that since there were twins, the first injection would have an add-on of dye. The barrel part of the syringe is interchangeable and thus one needle can be used to insert dye, screwed off, and another barrel placed on to gather the amniotic fluid. This insures that you are hitting the same place and that you don't have to puncture multiple times. The purpose of the dye is when they go to do the second amnio on twin B, they make sure they get the fluid from twin b and not twin a again. Apparently the sacs can be all over the place.

Guess what happened? 

Removing fluid for the second amnio showed blue dye. The doctor stopped and asked us if we wanted to continue. By now my husband has arrived and we have to explain what the blue dye is and what it means. It also, all of a sudden, occurs to me that 2 punctures to the same sac means we have just doubled that baby's chance of miscarriage. And the doctor says that if he hits it a third time it will triple it. And if one miscarries, then it can make the second one miscarry.

I sat shaking. Oh - and I haven't even MENTIONED how horrible this looked for my SIL. The first one didn't look painful until they removed the needle, but the second one definitely looked painful. What to do what to do? I felt paralyzed. Secretly I wished my husband would make the decision for us, but I knew that wasn't fair. My SIL turned to us and said she was fine if we wanted to continue. She continuously amazes me.

While the doctor started rambling on about some of our other options, I quietly thought to myself. There was a pause and I explained to my husband again, because I felt it had been glossed over, that the second puncture had increased the chances of miscarriage and a third would triple it. I stated it again to make sure my understanding was correct. The doctor said it was and my husband started asking more questions. Again I reach internally and quietly thought to myself.

What I realized was that my initial fears of chromosomal abnormality had not changed. I still couldn't deal with certain outcomes, but now I was increasing the chance of making a good outcome bad. And I didn't have my comforting statistics on hand to let me know what was optimal. Ultimately I internally decided that I felt we should continue. And to nut punch the doctor if he pierced the wrong sac again. My SIL reiterated she was fine to continue today.

I overheard the doctor saying we could try again in a week or two. This made ZERO sense because then you would definitely be piercing the twin A 3x (because you would have to do the dye again) and the timing would be off if we had to make other decisions. My husband turned stonecold at this point and told him "Just do it now." Hubby looked at me and I nodded my head yes.

The doctor found another area that he sounded more confident with injecting. Complete opposite side that had not been available (baby moved) previously. My husband asked him "between 0 and 100% what it your confidence rate that you won't hit Twin A a third time?" The doctor replied "Oh you can never be 100%" and didn't answer the question. Hubby repeated the question again and doctor replied "I'm very confident". Which of course we followed up with "how much is VERY???" His reply: "At LEAST 50%." Facepalm.

The doctor had to get into a weird hand position to access the third location. The dye check occurred and this time it was clear. We all breathed a big sigh, but the room was still incredibly tense. I could tell it was painful for our SIL. I watched as the doctor withdrew the amniotic fluid and saw his hands visibly shake the entire time. I have no idea if it was because he was old, nervous, or just because his hands were in a really awkward position. I decided that it would make the situation worse to announce "WTF is wrong with your hands?!?" mid-withdraw, so I stayed silent. (I did tell hubby, mommy, and SIL later.)

It was over. We were done. We asked SIL if she was ok. She said she was. Hubby ran downstairs to pharmacy because the doctors office didn't provide any after pain medicine and we didn't want her hurting on the long drive home. Tylenol was fine the staff said. SIL said she was fine, but hubby ran to get some Tylenol anyway.

My mother was waiting in the lobby when we were done. She had graciously volunteered to drive my SIL when we realized the night before that she shouldn't drive herself. Doctor's office failed to mention this. Hubby ran back downstairs and got drinks and Reese's peanut butter cups for everyone. We talked for about an hour to make sure SIL was feeling ok, before the long drive home.

At the end, we scheduled our appointment for the next ultrasound. We decided that Fridays would work best for everyone, rather than Thursdays. The front desk lady informed us that we would have a different doctor if we went on Fridays. Without getting mad, or causing a scene, I simply replied "GOOD" and she made the appointment. 

Testing... 1,2,3

Yesterday we went to the new OB/GYN with SIL.* Excited in our anticipation for another ultrasound, we weren't prepared for the possibility of NOT having one and were a little disappointed when it didn't occur. Not sure if it was because the appointment ran long, if the doctor felt it wasn't necessary, or she was holding off because she knew the perinatologist would want to do one. You know....because of all the testing coming up.

Testing? What testing?

Since I am of AMA, there are about a zillion tests that should be done to test for chromosomal abnormalities. Great another reminder that if something goes wrong, it's probably because we used my old-ass eggs. Thursdays doctor was not the first doctor to count me as 41, even though my birthday is not until the end of April. Seriously - I am waaaayyyyyyyyyyy over hearing the tut-tut regarding my age.

We elected not to do the chromosomal testing on our eggs/embryos. Not sure why, but it was one of the things I just didn't focus my laser (some say obsessive) research skills on during the IVF process. A part of me thought that a small biopsy could endanger our chances of implantation and thus we weren't really interested in lowering our chances (no matter how small) or spending extra money unnecessarily. Now, unlike congress, our proverbial bill is due and it is time to pony up (i.e. take all the tests).

Here is the nice handy-dandy chart for us to stress over for the next 6 or 8 weeks. Look a bit overwhelming? Yea, me too. Fortunately some of them overlap, so it's not like we have to do all. But we DO have to weigh the pros and cons of each and decide which we think is best.  Right now we are weighing more towards the amnio vs the CVS. Hubby says CVS is slightly riskier for miscarriage and the doctor mentioned something about loss of limbs(!!!). I haven't had the heart to look.

RISK ASSESSMENT CHART FOR DOWN SYNDROME AND TRISOMY 18 Screening parameters First Screen 11-14 weeks Integrated Screen Combines first screen & Quad Quad Screen 15-18 weeks Amniocentesis After 15 1/2 weeks CVS Chorionic Villi Sampling 10-12 weeks Down syndrome detection rate 83% 92% 81% 99.9% 99% False positive rate 5% 5% 5% 1% 1% Trisomy 18 detection rate 80% 90% 80% 99.9% 99% Biochemical Markers PAPP-A Free Beta hCG PAPP-A AFP hCG uE3 Inhibin-A AFP hCG uE3 Inhibin-A Diagnostic evaluation of hundreds of types of chromosomal anomalies Early Diagnostic evaluation of  chromosomal anomalies Nuchal Translucency NT NT NT *** *** Timing 1st Trimester 1st & 2nd Trimester 2nd Trimester 2nd Trimester 1st Trimester Open Neural tube defects Detection Rate *** 80% 80% 99.9% *** Fetal Nasal Bone presence Preliminary results/ significance *** *** *** ***

All this and we know we are at higher risk because of twins. I should be celebrating and instead I feel like a big bag of worry. At least the appointment went well.

*I never know whether to put SIL or surrogate. Some days it feels more appropriate to put surrogate for a number of reasons, but other days it seems so impersonal for such a great thing my SIL is doing. Bear with me. 

Still Here

And so are the twins. Yay!!!! Growth rate in both is great and heartbeats are great.

Our surrogate has been officially released to her obstetrician with special instructions to also see a perinatologist.  Her obstetrician will recommend a perinatologist that she [the doctor] is familiar with so they can work in tandem. Our clinic was very happy with our surrogates choice in obstetrician. Everyone is so excited for us. 

I'm excited too, but still very nervous. Twins increase everything, including risk. If I think about it too long, I will drive myself crazy.

More later - just wanted to drop a quick update. Crap it's late. Night all. (I can't believe it's after 1am - sheesh.) 

Complaining About a Nurse

A pet-peeve of mine: bad doctors or bad doctor staff. It truly drives me insane. When I was younger I would sit by and do nothing, but as I have gotten order I realize the EXTREME importance of being your own advocate. If you don't, then all sorts of problems can arise.

Yesterday I ran into an issue with a nurse at my new OB/GYN's office, that can best be explained by just including the letter I sent to what I hope is my doctor's email address (and compliant boards). Names have been removed to protect identities  (Let's be honest - mainly mine.)  Chime in on your thoughts.

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Dear Dr. W,

You may remember me. I am a new patient that recently was locked in a bathroom on my first visit due to a mechanical problem with the door handle. I received your letter recently and I was extremely impressed that you took the time to hand write and send me apologies. In this day in age, that is not only rare, but extremely impressive. Thank you for taking the time to do so; this speaks volumes about you. The door was clearly not your offices fault and just one of those things that sometimes happens.

Unfortunately, I am writing to you today to discuss another issue. Namely your nurse M. W. and her extreme rudeness, as well as cruel words to me on the phone yesterday. Our phone conversation ended with me requesting that either you or someone else, anyone else, from your office call me to discuss my case. Not only was I in tears for a long time after our call, but I am concerned that she will either delay or not have someone else contact me from the office. I will give the details of the situation below.

On Friday I went to the ultrasound that you and I has spoken about previously in your office. The person that did my ultrasound was professional, pleasant, and caring. I'm not sure of her name, but she is an outstanding individual and an asset to XYZ. After my ultrasound, I asked her if there was a cyst on my right ovary. I specified the right ovary because I am familiar with pain that has shown to be related to it and I was having it. The ultrasound technician stated I did not have a cyst, but I did have some free-fluid. When I asked some more questions, she told me that the images would be sent to someone else and a report would be passed to my doctor, who would discuss the findings with me. Perfectly reasonable and professional, as I shouldn't expect her to make a diagnoses.

This week my cramping on my right side became slightly more intense, but as I have also developed the flu, I decided to patiently wait for the call from your office. By Thursday it had not come, so I put a call in myself. My call was returned a few hours later by whom I have since been told was M. W.. What happened over that call not only put me in shock, but others as well.

Ms. W told me that my ultrasound was perfectly normal and showed no problems. I asked about the free-fluid and stated I was concerned, because many years ago I had free fluid that eventually landed me in a 5 day hospital stay with a PID infection. During the period, it took me almost 2 months of dealing with pain to recover. Ms. W's first response was to get extremely curt with me and say the ultrasound technician had NO BUSINESS telling me that the free fluid was an infection and started going on a rant. I interrupted and explained that the technician had NOT said that and had only stated that there was free fluid, but the rest was from my own personal experience  She continued to rant and I again iterated that the technician in NO WAY, had said anything other than free fluid.

I then went to explain to Ms. W., that my husband and I have been going through IVF and we will be starting our last cycle soon. I explained that due to my age, this would be our last cycle, so it was EXTREMELY IMPORTANT, that anything, such as an infection, be taken care of now rather than have it possibly cause a problem with my cycle, or delay it, which is also a problem due to my age. I further explained that the pain in my pelvic region was continuing. Ms W. was combative at every step. While that is bad enough in itself, Ms. W. took it upon herself when given NEW facts regarding my case that should have been considered by my doctor, to diagnose me herself. And her diagnoses was that there was nothing OB/GYN related wrong with me. She stated that the free-fluid came from a cyst bursting. I'm not sure how one could tell if it is from a cyst bursting or possible other infection (without testing the fluid), but she simply didn't allow for such questions from me. She only wanted me off the phone and off her charts.

She told me to call my primary care physician, to which I explain I have just gotten all new doctors due to moving, and the earliest PCP appointment I could get with XYZ was over a month away (already scheduled). She then told me to go see my IVF clinic. This is not practical for me as 1.) My main clinic thus far has been in India, though I am returning to my American clinic 2.) Insurance will not cover these sort of things at an IVF clinic. She then told me to go to the ER if I was in pain. At this point I asked why I could not speak to the doctor or at least have the new information relayed to him. She said that NO doctor calls back his patients. While this may be the policy at XYZ, I can assure you that I've never had an issue with this with any other doctor. I gave her an example of an OB/GYN I had for 20+ years that always called me back when requested, but she didn't really seem to care.

I told Ms. W. that I wasn't trying to take it out on her, but that I didn't understand why she was trying to hem-haw and not let me get the patient care from what I felt was a OB/GYN issue. She dismissively told me that pelvic pain could be from many areas and that she felt it wasn't an OB/GYN issue. I may be wrong, but I really think that it is out of place for a nurse to be making these decisions without conferring with the doctor. Especially if I have introduced new information that the doctor was unaware of.

The pinnacle came on her final berate of me that I can only describe as the most callous and unprofessional interaction I have ever had with a doctor's nurse. She sarcastically said to me "Look. I'm sorry you can't get pregnant......" and I have very little recollection of what she said after that - I was in tears and shock. She doesn't even know my case to be saying if we can get pregnant or not and it is extremely cruel to interject this statement when it has no bearing on the issue at hand. Especially to someone currently going through IVF treatments. I'm not sure what else was said except that I finally interrupted her rant to say I needed to speak with the doctor or someone else from the office. That I could no longer speak to her. Her response was "I have no idea when the doctor can get back to you" to which I responded "Anyone. Have anyone call me back besides you. I need to speak with someone about my case, and I can not speak to you." After about an hour, I was able to collect myself and call back XYZ to find out the name of the nurse whom I had spoken with. The receptionist looked up my notes and said it was M. W..

At this point I have no idea if she even passed on my information to anyone else. I am horrified by her treatment of me, especially given that I am going through infertility. I would expect an OB/GYN's office to be the last place this sort of thing would occur. An OB/GYN staff should be the opposite of this and in my 25 years experience with OB/GYN offices, it always has been.

To recap:

1.) Ms W. took it upon herself to diagnose me without speaking to a doctor about new developments in my case

2.) She was combative and unnecessarily cruel

3.) I have very little confidence that my information was ever relayed to anyone else, much less my doctor. Thus I don't know what the next step for me to take with my care is and I sit in limbo wondering.

I have written very few letters of complaint in my life, but I felt that this was important enough to write one. These are never one time occurrences and nurses who speak to patients like this should not be in such a delicate field as OB/GYN. Please let me know if and when I can expect a call from your office to discuss my case and concerns. Thank you very much.

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UPDATE: The office is part of a very large hospital and medical teaching school. My email has already created a stir and I received the nicest phone call from my doctor's office and an email from someone I don't know, but is with the organization. There will be an investigation into the matter and I'm hoping there might be phone records. While I certainly don't like to get people in trouble, I feel much better knowing my complaint is being dealt with quickly and that it's important. Besides my complaint  the person that called today is making it his personal duty to get answers to my medical questions ASAP (doctor is out today). He was really really nice and soooooooo much easier to have a normal conversation with.

UPDATE 2: Doctor called and not only was really nice, but alleviated my fears after lengthy discussion with me and pulling up all my records. He also made a funny comment about the nurse wasn't loved enough as a child as has no business being a nurse. Apparently this was not an isolated incident. 

You have questions...We have answers

Actually I need your answers, so if any of this sounds familiar please post your experience/knowledge in the comment section.

On Tuesday night, I attended a seminar at my old clinic ACRM, here in Atlanta. I described some of it here and also pinky-swear promised to post the questions I posed to the new doctor during the Q&A session. (Ok, I didn't really pinky-swear, but I wrote I would, which is almost like the same thing.)

So here are the questions I asked.

1.) Can endometriosis affect the outcome of an IVF cycle if the woman is using a surrogate?
A.) Yes it is possible. [Sadly I have forgotten the reason behind it. I believe she did mention that there could be an effect on the eggs in a follicle and thus less eggs retrieved, but for the life of me I can't remember if she said certain things or if I am confusing it with stuff I have read.]

2.) Besides cost, what are some of the downsides of using ICSI?
A.) There have been studies done of the offspring conceived by ICSI and it was noted that the male children had a higher rate of sperm problems. Whether this is a cause of the ICSI or due to genetics (ie, the father having sperm issues thus ICSI was used) is unknown. 

[This one I already knew the answer to, but I wanted to make sure there wasn't anything else I didn't know about. Primarily because our clinic in India uses ICSI as a default with no extra charge (unlike here in the States).]


3.) How long after a laparoscopy, do you need to wait to start an IVF cycle?
A.) Generally the recovery time is short and we like to do the next cycle as soon as possible. Especially if the woman is older.
[I know they can't do it the same month as IVF, so I'm guessing that means you just have to wait until the next month.]

I'm getting conflicting statements about #1 and I'm a little concerned about it. Everything I read regarding endometriosis and IVF revolves around the woman carrying the baby, there is very little info for women using a surrogate.

My new OB/GYN did not seem to think that endometriosis would be a problem for me (with regards to lowering my IVF success rates) since we weren't using my uterus. In fact he thought there was a low likelihood that I had it since some of my symptoms were relieved with my cryoablation. He advised for me to find out if the cyst I had aspirated during my first IVF cycle was a chocolate cyst. He did mention at the end of our lengthy consultation that he did not specialize in reproductive endocrinology, so I'm guessing that was his out if he was wrong. The only surrogate cases he probably has is if someone walked into his office who IS a surrogate and already pregnant. Also this WAS before they locked me in the bathroom.

Conversely, Dr. GS on SIRM's forum indicated endometriosis could cause a problem in my case, but it was hard to tell if he understood that I would not be CARRYING the child. Even though I definitely mentioned it. (I am awaiting on a response for that clarification.) He mostly pointed me to articles that either talked about the problems in the woman's lining (and toxins activated in it) or in one case a long article he wrote with one tiny sentence that suggested a gestational surrogate would be a better option. That seemed to contradict his reply to me. Anyhow, I've awaiting clarification.  [UPDATE: Dr. GS did reply and state he missed the part about gestational surrogacy. He said that in the case of immunologic implantation dysfunction, it wouldn't apply to me, but an endometriotic cyst would affect egg quality.]

The REASON I'm even asking is because I don't know if I should be tested for it. We have decided to cycle again, but this may be my last one and I want to optimize my chances. If endometriosis can affect my eggs pre-aspiration, then it seems like a good idea to be tested and get any problems fixed. On the FLIP side, scheduling and doing a laparoscopy  plus recovery time could add a couple of months to the process - thus lowering our chances. PLUS some doctors advise against laparoscopic surgery for poor responders as it can further lower your ovarian reserve and raise FSH levels.

What to do, what to do. Time to go have a real one-on-one with our ACRM doctors again.

As I said at the beginning, feel free to chime in. 

Locked in the Bathroom

Ok, not as dramatic as it sounds, but it is true, I was locked in a bathroom, unable to escape, for 1 whole hour on Wednesday. Went to my new OB/GYN's office and upon leaving I decided to make a quick trip to the restroom. Bad idea.

The door was one of those handle doors that you pull down or up to unlock the push button. I reached for it and pulled handle down. I watched as the lock button popped out, heard a weird clunk, and then nothing. Crap. Did what I think just happen, happen? Shake it a bunch more times - yep, it did.

The only thing between me and freedom

I then proceeded to politely knock on the door. Nothing.
Then  I shake the door. LOUDLY. Still nothing.
Then I see this:

Helpful button by the toilet

Not exactly "intended use", but I really don't want to be stuck in the bathroom all day, so I ring it.

Someone comes and knocks on the door. I explain the situation and after convincing her I do NOT - in fact - have the door locked, she calls in reinforcements. They can't open it either. They shake and wiggle, but that door is not moving.

About this time I realize how hungry I am. I forgot to eat breakfast, but I did have the forethought to throw a yummy, blueberry bagel in my purse (wrapped of course). I'm starving. The bagel napkin peeks out from my purse sitting in the sink. It's after 3pm and I haven't eaten a thing. I text my BFF who I was on the way to visit and let her know my predicament.

Seriously. I could just imagine the door opening and a crowd of people standing there. And me. With my mouth full. Of what - they aren't sure of. I could totally see that happening to me. That's the sort of thing that would happen to me. Kinda like getting locked in a bathroom.

10 minutes later I overhear someone say "we could slip her a really, really thin pizza under the door" which is super weird because

    a.) I never said out loud I was hungry

    b.) girl aim is usually not that great - the floor would be the only place to set down a urine sample container  

    c.) HOW THE HELL LONG DID THEY THINK I WAS GOING TO BE IN HERE?

As the minutes tick by and I hear a new group of people attempt to bang on door handle with a hammer, it occurs to me that I am standing (in one of the few places available), directly across from the door. It occurs to me that this is not the best place to stand and I move to the corner beside the door. So here I am, a 40 year old infertile woman, trapped in her OB/GYN's bathroom, standing in a corner. And somehow the absurdity of it all, makes me smile; when all I have wanted to do for the last 2 days is cry.

At that moment the door handle goes flying across the room at lighting speed EXACTLY where I HAD been standing. POW!

The door still does not open.

So they screw around with the door some more. More hammer bangs ensue. I inquire as to unscrewing the hinges, but they seem to think it won't work. I inquire if I should try and use a credit cards - they give the thumbs up and I watch as my marta card splits in the middle for cramming it in the too tight space. I begin to wonder if they are going to have to break out the metal saw. Or if they even have one.

Someone tells me to make sure I'm not standing in front of the door. I refrain from a smart aleck comment. 5 minutes later, the door unceremoniously opens. Hurray!

A crowd is gathered  outside (of course) with my doctor standing in the middle. "Welcome to our practice!" Several people ask if I am ok (I was only in there for an hour folks). Knowing I'm starving and having a severe aversion to people staring at me, I quip "yea, this sort of thing happens to me all the time." As I am handed a free parking validation (woo hoo!), I notice the strange look on the lady's face. I realize she is trying to figure out if I meant I get locked in bathrooms all the time. Perhaps "yea, weird things happen to me all the time - no biggie" would have been a better response, but the moment has passed to clarify and I run out the door. There is a wrapped bagel with my name on it.

No news is probably not good news

2 mature eggs retrieved.
24 hours later neither have fertilized, but neither have degenerated.
ICSI was performed.
We are asked to check again tomorrow. Can take up to 48 hours. Embryologist will not answer the question of what is the longest she has seen take.
Husband can barely speak.

As promised, my little communication rant

Frustration: I haz it

Fair warning: I'm PMSing and frustrated. Anything remotely drama-queeny is not my fault. 


I am getting frustrated with the communication issue with our clinic. Have done enough research to know that our doctor is super-duper busy, but that begs the question: why doesn't she hire additional staff? A case manager would be fantastic. 

The doctor uses a yahoo email account, and from what my hubby says, yahoo doesn't give the thread of all back and forth emails. Essentially that means I am emailing the same information multiple times, even though I can see (with gmail) that the information is all there. 


Her: "Send me your results"
Me: "They are at the bottom of this thread."
Her: "Ok. Then please send me your results" 
Me: Sigh. "Ok. Here you go. Can you answer these 15 questions for me."
Her: "Yes, but only after a few days and only with one or two words answers."


2 weeks later...
Me: I have a couple of quick questions.
Her: "Ok. Send me your results."
Me:  "Ok. Let me go stab my eyes first." 


Is this going into a case file? Maybe she just doesn't have time to look at everyone's file when responding to the hundreds of email she gets (she personally responds to all emails herself). Again, this is where a case manager would be prime. Or Sharepoint. Or somethin. I hate to be the spoiled American, but jeez. 

Actually it wouldn't have even bothered me except some important information almost slipped through the cracks about when I am supposed to start BCP and our arrival date. At least it seems important. After a few unclear emails, where I literally wrote "just to clarify" on each one, it was discovered that we would need to take BCP for an extra day to be in sync for my arrival. I have no idea what the consequences would have been with me being off sync with the surrogate by 1 day or starting the IVF cycle a day later. Maybe nothing, but maybe something. 

When I don't get a exact details and clarity up front, I get super anxious. Like super-duper anxious. More than the average person. I have to keep important information in an easily accessible digital format (thank you Evernote) that I can access no matter where I am, as I sometimes have what I like to call "processing issues" (don't ask). This make me prone to be an "annoying patient" because I need uber clarity and a high level of granularity.  Had I started this "clarity" routine earlier in life, I would have saved myself tons of money and a big chunk of my sanity. Let's just call it "lessons learned". On the flip side, it make me wonder if hyperventilating is a good relief option when I don't get it. "Paper or plastic ma'am?"


I've had to reign these OCD eccentrics waaaaaaaay back based on my husband's advice, so as not to offend. Something about doctors getting offended when patients questions them or something; I don't remember because I didn't write it down. "Make sure you write things like this...." OMG A SHINY BUNNY! That's like a double rainbow!

My in-laws repeatedly tell me on the phone "take no tension!!!" I wish it were that easy. Things like this make me go bonkers. Bonkers is not good. I'm PMSing and the weight of everything that is going on is ringing the doorbell. I don't even have my pants on. Or coffee. I'm not even making sense now. 


At least her email didn't bounce back again today like it did yesterday. A month from now I will be in India again. Holy crap. 


UPDATE: Crisis averted. She has responded and now I feel much better. 

Monday's meeting - better than expected

Just getting around to updating on Monday's meeting with our [wonderful] doctor here in Atlanta. I'm feeling lazy, but I don't want to procrastinate in writing this so - presto! - I'm going to just copy what I wrote to my mom yesterday.

The doctor said she "had" to tell me that the one bad test (FSH) does statistically lower our chances, but that all the doctors still felt I was a very viable candidate when viewed with my other test scores. (Sound like I'm in school.)  Technically my FSH isn't really even THAT bad, but slightly higher than they would prefer. They wanted it under 11 and it was 12.4. At a level of 20, they advise against a woman proceeding with her own eggs. <9 is optimal. It can fluxuate from month to month (and always fluxs during your menstrual cycle), but they try to look at it from a perspective of your highest reading at the beginning of your cycle (day 2 or 3). Stress and such may be a contributing factor for your body producing higher levels (they just aren't really sure what all may be factors). 

That made me feel better because I'm guessing with their sharp increase of success rate in older women for 2010 (over previous years and higher than the national average) I was worried that they would consider me as too risky a candidate. It says a lot that they would still be confident with me as a lot plays into their SART scores. Having a higher success rate for women 38and up will certainly get them mentioned in Top 10 lists for magazines and such. So it was nice that she was still really confident regarding my chances. 

I asked her about what the nurse said regarding freezing embryos now, and she said that she didn't feel it was an immediate concern. If we found a surrogate and were able to do a cycle in a few months and THAT one wasn't successful, THEN she would advise that we consider it. She is such a nice and professional doctor; I wish all my doctors were as great as her. 

After doing some research with published papers, I noticed that my scores are a bit of an odditity. Specifically, that most women that have higher FSH scores usually have bad other scores. They even have a lot of cases where women with normal FSH scores are falsely masking a problem, but the other scores shed light on what is called "falsely suppressed FSH."  In my case (an AMH score in the normal range but an FSH that is elevated) only 5% of all cases are like that. Therefore, there is not enough research to give good statistics that the higher FSH will be a problem. Add to the fact that I had the cryoablation (also an extremely small sample size of women that go the IVF route) and I guess it is anyone's guess. I halfway wonder if the missing uterine lining has an effect on pituitary gland trying to create more FSH. I should have asked the doctor the other day, but I forgot. 

My mom cracked me up with the beginning line to her response:Well, it sounded like you were talking in a different language there, but I got the gist, that you weren't perfect, but good to go.

Moms are awesome like that. It totally made me realize how much info I have learned in such a short time. Now that I think about it, that gives me a much needed confidence boost in a time where I definitely need all the help I can get.

We're going to have a meeting about the meeting and get back to you.

The nurse called today and initially told me what I thought she would: "The doctors had their meeting and your doctor wants to schedule a consult with you to discuss the results. Wait what? Earliest we have available is next week. How will that work for you?" GAAAAAHHHHHH!

Seriously? I have long thought that doctors operate in a different world where test results are just little things on pieces of paper that get moved around and talked about while sipping tea. No rush. Take your time. One lump or two?  It's not like we are waiting for each minute to tick by. The internet feeding our fear like a hypochondriac on WebMD. This confirmed my tea theory and it took me all of second to decide that I was NOT going to wait another 6 days.

"So what does it all mean? Are we still ok to use my eggs?" Nurse: "oh yes, it just means the doctor will probably want to give you more fertility meds and you should think about freezing some embryos now. It could take months before we find a gestational carrier." And there it was. We were still a go with my eggs and of course, my husbands gametes. (Is it weird that I don't want to post the S word?) I didn't have the heart to tell her we were going to India instead.

Now we just wait for our meeting about their meeting about our test results. Where they tell me "TIME IS OF THE ESSENCE!!!" As if I didn't already know that. Hopefully I will have a zillion more questions by then. Wait....that's my hopeful? I may need to schedule a meeting with my hubby to discuss this...

And the answer is...

....
....
....

Yes, exactly.
No answer.

Doc's office did not call today like they were suppose to. Left a message, but they have a dreadful phone answering system that often cycles me around till I land in someone's voice mail.

Bad ending to a super-bad day. At least my hubby is wonderful.

Stats! need stats, stat!

Where we are right now: we knew from the beginning that we would have to go the IVF/surrogacy route (more on that later), but late last year we were given some hope that I may be able to carry a baby. Several tests and renewed hope/worries, we were told a few weeks ago "that ain't gonna happen". Ok fine. Back to square one. What we were not prepared for was the cost... After much research I had to inform my husband that the possibility this could easily go over 6 figures, was very real. Not to mention costs if something medically went wrong with the gestational carrier (new code word for surrogate) and she doesn't have insurance. I'm guessing most won't.  (All of this lead to my idea of surrogacy in India, but I will save that post for a later day.)

Here is a tiny shred of info about us: 
My stats - 40 years old, Caucasian, good BMI of around 22, generally a healthy eater, exercise semi-regular, semi-weird health issues over the years with nothing serious.
DH - 40 years old, Indian, mid-range BMI for male, generally a healthy eater, exercise semi-regular, no known health issues.

Current state of basic tests:
His tests showed good count, with a little slowness.
My tests showed an AMH of 1.7 (normal range), FSH of 12.4 (GAH!), and 16 follicles (yay). (Stay tuned for my rant on confusing AMH numbers...)

I honestly expected a much lower FSH and the news hit me hard. The news of 16 follicles earlier that day was probably the one thing that didn't make me crumble in a pile of tears. Just kinda stone-faced for a few hours. I'm hoping that the HUGE amount of stress I have been dealing with lately (tremendous stress at job, followed by loss of job, car accident, worrying about money, worrying about this whole IVF/Surrogacy thing, blah blah blah) may have had some affect and that with proper stress reducers, followed by a few lifestyle changes (no alcohol, cut way back on caffeine, muti-vitamins, baby aspirin, avoid toxins, etc) that this will help.

The logical side of me worries because I saw a blurb on the interwebs that some doctors believe your highest FSH is where you are at no matter if it fluctuates later, but the hopeful side of me reminds me that all of this is not known yet and thus doctors can not have an absolute certainty of what may or may not help. Besides, the article very vaguely stated "some doctors believe..." with no facts or numbers to back it up. Plus, I tend to be the girl that doctors say how unique my situation is. With everything. Want proof?  My normal AMH combined with my FSH puts me at less than 5% of cases of a study that was about AMH and FSH numbers combined. When looking at SART reasons for infertility, my medical issue of why I can't carry a baby has me at less 2% of the population that goes to infertility clinics. Essentially, it means I really don't have a lot of stats I can lean on at the moment to gauge what our success will be.

Our US doctor will be calling me later to either "discuss the results from last week" or "schedule an appointment to discuss the results from last week". Not sure which since the lady on the phone (when I was driving no less), gave me the info and I honestly did not hear much after "FSH 12.4" and "doctor team will discuss internally at their meeting on Monday". We are in the process of talking with several clinics in India as well and will see how that goes. On SART, our clinic had an over 30% success rate with women my age last reporting period (2010). This statistically significant enough that it will make them stand-out, but it also makes me wonder if they skew what they advise. As in "you really need to use donor eggs" instead of what might be a perfectly normal range of odds for my age.

Sigh. I told you I over-think things.