Wednesday, January 27, 2016

The Endometrial Function Test



      Yesterday my husband and I took a trek to SIRM-CT to visit with Dr. Wang and allow him to stick another fun tool into my uterus in the name of infertility. On the plus side, it was my husbands birthday and I gifted him with a sperm DNA fragmentation test. He got to jerk off and I got pieces of my uterus scraped out. Fun day.

    Truth be told, I've tolerated all of the invasive infertility tests like a boss. And yes, I'm pretty damn proud of this. There isn't much my reproductive system does well, so if pain tolerance is something I can brag about on behalf of my ute, then so be it.

   To date, I've had the HSG, an in-office hysteroscopy and a 3D saline sono and haven't really had any difficulty or great discomfort with any of them, but this test had me a bit nervous. I couldn't find my gluten free ibuprofen (yup, the life of a Celiac patient...) so I decided to go commando on the pain control front. I was stationed in a typical obstetric room and Dr. Wang showed me the tool he would be using. It looked a bit like this:

Source


     Basically, it's a plastic catheter that has an inner portion. You insert it into the uterus and gently pull back on the interior portion which creates a vacuum-type force that aspirates the endometrial contents into the catheter. The goal is that the RE will continue to aspirate as the catheter is slowly removed so a variety of endometrial tissue is obtained, and not just tissue from one spot. Basically, you need a representative sampling of tissue for the most accurate result. Dr. Wang had to go in twice to get enough tissue. It wasn't uncomfortable getting the catheter in, but I'll admit there was some discomfort as he was aspirating, but nothing that I couldn't deal with. I felt some intense cramping but it wasn't anything beyond what I have felt with my period. However, I will say, if you wanted to die during the HSG or any of these other in-ute tests, then this once won't be a piece of cake. It was pretty quick, and then it was done. My husband was allowed and encouraged to be in the room, which I really appreciated. Its high time he sees some bloody catheter action and realizes that my portion of IVF treatment isn't all illicit back-alley patient rooms with porn assortments at the ready.

   All-in-all, I believe the test is costing us $595 + shipping. We chose the EFT over the E-tegrity test because Dr. Wang felt that it's the "safest" test. He said that there have been incidences where the E-tegrity test has come back normal, but the EFT came back abnormal, yet he hasn't really seen it come back the other way around. So, worst case scenario, the EFT comes back erroneously abnormal and you receive treatment for it....but I think that is much better than getting an incorrect normal result and wasting more embryos on a shoddy uterine environment.

   Now, we wait. The DNA fragmentation results should be back in a week or so. We are doing ICSI regardless, it's just a matter of whether we add PICSI into the mix instead. It will take about two weeks to receive my EFT results, and I have my follow-up with Dr. KK in about two weeks as well. Then, as of February 8th (hopefully!) we have our baseline and start stims for IVF #3.

 I really feel confident that once we sift through all of the results, we will really have our full infertility picture, which, for better or worse, will be such a relief.
Sunday, January 24, 2016

The Luck of the Infertile





     I'm a graduate teaching assistant (TA) and today we had our pre-semester training. One of the girls I TA with did IVF last semester due to male factor infertility (MFI). Long story short, we commiserated over our infertility journeys and then she went on to get knocked up during her first IVF and sock away 10 frosties!!! For a DOR girl who is now headed to IVF #3, I think she can eff off. Nothing against her, I just think that women who get pregnant on their first IVF AND have a fucking trillion frozen embryos are "the infertility fertile." She'll get her whole family on those embryos and then some while I'm all over here with jack shit.

     Mostly, I'm pissed at her because after I told her I was having a chemical pregnancy (in November), she immediately went on to tell me how her betas were so high they called her in for an early u/s to make sure everything was ok. And they saw everything they needed to. But, she was nervous because there was no heartbeat...at like 5w1d pregnant when its very much not expected to see one and she knows it. Fuck her.

      I may or may not have gone home after that encournter and collapsed into a breakdown of epic proportions. It was seriously my lowest moment in infertility. Luckily, I've rebounded a bit from that, but my world spins on a shaky axis, which is already slightly off-kilter due to the birth of my friends baby earlier this week.

     Anyways, my plan for the day was to avoid her. I just can't. Seriously. So, I was doing a great job directing my attention to my phone and pointing my glare in the opposite direction when another TA walks in and she's visibly fucking pregnant. WHAT THE ACTUAL FUCK?!

Ok, fine. Sneak attack. I can deal. Right?? Wrong. My boss then proceeds to notice the pregnancy, squeeee about it for ten damn minutes, repeatedly bring it up throughout the day, and then  facilitate a baby conversation that went on forever. Ugh. Not today. Not now. Not when I'm on shaky ground. Not when my anxiety is sky-high, not when my cycle is starting and test results from Dr. Kwak-Kim are going to come rolling in.

Obviously I don't expect the world to revolve around me, but would it kill the world to throw me an infertility softball one of these days? 


Friday, January 22, 2016

Taking Infertility to the Skies





     Last Friday, we did something super ballsy. We got on a plane and flew to another state to see a doctor. That is really something I never thought I would do. Ever. I would always read about these couples who travel to SIRM or CCRM from across the country, and thought, wow, that's fucking nuts.

Yet, there we went...off to Chicago to see Dr. Kwak-Kim, one of three reputable Rerproductive Immunologists (RIs) in the country. There is a pretty awesome website that was developed by the fine ladies behind the reproductive immunology group on Yahoo that can be found here. It outlines who should go see an RI, what tests the run, basic costs and which REs will play ball with an RI.

Reproductive Immunology is considered somewhat "experimental" but is gaining traction. It has always made sense to me that the immune system plays a role in conception and pregnancy, so after our first IVF failed, I got to business setting up a consult. I have Celiac Disease, which is an autoimmune condition, and endometriosis, which I also have, is also considered an autoimmune issue. That, combined with my lack of pregnancy in any way, shape or form, led me to seek out an RI.

I researched RIs and realized the Dr. Braverman of NY, Dr. Kwak-Kim of Chicago and the Alan Beer Center - named after the pioneer of Reproductive Endocrinology (who also wrote the book Is Your Body Baby Friendly?) were the main players in this game.

Dr. Braverman charges like $3k to meet with him and requires you to cycle with him, but mostly, I heard he's an ass hat. The Alan Beer Center is in California, and Dr. Kwak Kim came highly recommended. Plus, she studied under Alan Beer himself.

To schedule an appointment, you are required to send her office medical records from all providers - which, for me, included my PCP, Metabolic/Genetic providers for my PKU, my current RE, my surgical OB and my GI doctor for my Celiac. I had all the records sent to my home, and sent them off in a packet, along with the new patient form. I received a call within a week to schedule my appointment - the earliest of which was 3 months later on January 15th. 

We flew in Thursday afternoon, picked up our rental car, and drove the 30+ miles to a Northern Chicago suburb. We camped out in a local hotel for the night and arrived bright and early at 7:45am for a whole host of appointments.

The first thing I learned at my 8am ultrasound was that I can't follow directions for shit, as I did NOT show up with a full bladder. What a fail. I chugged 3 cups of water and they started with a 35-minute internal exam to view my insides as well as the blood flow to my reproductive pieces. Turns out, while blood flow to my ovaries is good, my uterine blood flow isn't great...and the ultrasonographer thinks I will need Heparin.

Also, my endometrioma on my right ovary is actually TWO endometriomas...one bigger one that is squished next to a smaller one. But despite that, the blood flow is good!

The biggest news to come from the ultrasound is that there is a 16mm cyst either on the lower uterine segment or on my cervix...the exact location will be determined after Dr. Kwak-Kim consults with some other practitioners on it. So, that doesn't sound great from a pregnancy perspective.

From there, an external exam was completed and I was ushered to my blood work appointment - where 19 vials of blood were taken. This makes about 40+ vials of blood that have been taken since Christmas Eve. I'm so badass.

After that, I had a health history and physical exam by the NP. She was awesome and totally indulged my NP-student desires but explaining the assessment to me and making sure I heard and felt all of the things I was supposed to.

Finally, a few hours later, we were led into a meeting in a conference room with Dr. KK, a student and some sort of a physician helper. She briefly went over my history with me and explained the preliminary findings from the ultrasound. She was very nice and knowledgeable. We have a phone consult scheduled for Friday 2/5 to go over the full results and receive her recommendations. She also stated that because I'm already diagnosed with autoimmune issues, particularly Celiac, she sent me for a thyroid scan after our meeting, which showed a perfectly healthy thyroid. Finally, we were handed a booklet that outlines all of Dr. KKs treatment protocols.

All-in-all, it was a productive and overwhelming appointment. She suggested putting off our next cycle but I'm going to compromise and suggest a freeze-all. Since the bloodflow to my ovaries is good, I think I should stim well, and of all of her other treatments, there really isn't anything that will affect my egg quality other than IVIG, which we won't do if it isn't covered by insurance. I'm praying that since my NK Cell level is good, IVIG won't be recommended. Our cycle start is estimated for 2/8 so we can have our full results back before embarking on our cycle.

The hard part now is management. Dr KKs results needs to be sent to Dr. W, test results from Dr. W (like my EFT scheduled for Friday 1/22) need to be sent to Dr. KK, and I need to keep up with my old fertility clinic since I will be receiving external monitoring there.

Overwhelming. But hopefully fruitful...at the end of the day, switching to such a great doctor and seeing Dr KK paints the entire picture as much as it medically can. So if things don't work out, or if we move on to donor eggs, I'll know we did everything we possibly could.
Wednesday, January 20, 2016

Heartbreak

 I have a really good friend who just had a baby, R. She was my roommate in college, and a bridesmaid in my wedding. And she just had a baby. Another friend of mine who has a child.

Her and her husband tried for about 9 months. She was a bit impatient and ran off to her Ob after trying for 6 months, and when she heard she had ovarian cysts, she then ran to the RE. She went straight to IUI as her husband has a very slight morphology issue, and had a chemical pregnancy. The next month, bam, they were pregnant on their own.

I would love to say I was super happy for her, but I wasn't. I'm not angry, either, but my feelings regarding almost everything in my life are muted at this point. I couldn't bear the idea of attending her baby shower in November as it was being held 2 days after I was going to find out the result from IVF #2. Its safe to say that this general time period was also the peak of my depression and anger related to infertility.

At some point I began to accept that I'm on this shitty, shitty road and started feeling better. So, in an effort to try to be a halfway decent friend, I stayed involved in her pregnancy. She gave birth Sunday and myself and another friend went to see them at the hospital. I even dragged myself to the baby section of Target to pick out some cute outfits, deep breathing the entire time, and blinking back tears. I kept repeating to myself to not think about what I was doing so I could keep my shit together.

It was great to see them and meet the baby, but holy shit it was hard. As I held him in my arms, I tried to image what it would be like to be holding my own child, and felt a profound sadness as I stumbled upon the same fear that I've mulled over in my mind for years now: what if this never happens for me? What if I can't have a baby?

I envied her so much today. I even envied the childless friend I was with as she's still full of hope and excitement as she embarks on trying to conceive with her husband. And she has every right to be hopeful - she will very likely get pregnant easily and have a healthy baby - most likely, she'll accomplish that before I do.

I'm hoping so hard that it hurts, and I'm so sick of the pain.
Tuesday, January 19, 2016

Dr. Wang @ SIRM

     I finally got the opportunity to meet Dr, Wang at SIRM CT, my new RE, a couple of weeks ago for a 3D saline sonogram and some basic immune testing. Prior to this appointment, my thrombophilia panel showed a heterozygous MTHFR mutation (you can read more about MTHFR here). I also found out that my AMH has only dropped from .82 to .79 in one year, and my FSH actually went from 9 to 8.9 in a year. This is super good news because I was petrified that my fertility would have dropped significantly.

    So, I drove the 2.5 hours down to the office and met Dr, Wang. The first thing he said to me was "thank you" for driving down to his office. What?! When was the last time a doctor, especially a fertility doctor, thanked me for making the time to see him?! He performed the 3D saline sono himself, with a nurse and a PA student in attendance. The test went great, and we were able to see that my septum was successfully resected, and that no scar tissue is present in my uterus. Thank goodness! My septum had been 9-10mm and now it's down to 5mm, which still qualifies me as having an arcuate uterus, but shouldn't cause any issues.

The nurse then drew blood for the NK Cell and Th1/Th2 tests. Those test results came back last week. As Dr. Wang described it, NK cells are a component of our immune system that suveys the endometrium for bacteria and viruses, and attacks them when needed. He stated that they are also important in the regulation of embryo implantation since that can sometimes be viewed as an invasion of the endometrium. When NK cells are overly active, the theory is that they attack an implanting embryo which causes infertility, but more commonly miscarriages. He said that a normal NK cell level is less than 15%, and mine came back at 4.2%. Phew! This was super great to hear, as the commonly prescribed treatments for NK Cells are IVIG (which often isn't covered by insurance and is super, duper expensive...like $2-3k/infusion) or intralipids (a concentrated fat infusion), which is not always successful.

Next, he tested my Th1/Th2 Cytokine Ratio. Dr. Wang said that most immune tasks can be broadly categorized into the Th1 and Th2 modes. He said the Th1 mode is more pro-inflammatory and used for destroying enemies like bacteria and viruses. The Th2 mode is more surveillance/observation, which is ideal for pregnancy.  He likes to see the ratio between the two to fall under the 95th percentile and mine is between the 90-95th percentile - so a high normal level. To err on the side of caution, he told me to be cautious and start the following:

1) Begin 2000mg of Omega 3 fatty acids a day as Omega 3s may be able to reduce Th1 inflammation
2) Continue with 2000iu of Vitamin D (there is evidence that Vitamin D aids in restoring the appropriate ratio...and, as I learned last week, aids in decreasing autoimmune processes in the body)
3) He is going to start me on 10mg of Prednisone during my cycle when we begin stimulation.

A girl on the Resolve forum said that her Th1 was off-the-charts high and is recommending Humira pre-cycle for her. So there are a variety of treatments for this.

Well, a new day brings some more infertility news...how many more issues can we uncover?!
Thursday, January 7, 2016

     I cannot believe it is 2016. I cannot believe that we started trying in 2014, which, I realize, is nothing compared to many couples.

      I made a conscious decision to minimize our celebration of the holidays. My dad decided to help with that endeavor by having a "heart event" that resulted in a double bypass and a holiday hospitalization. He's doing well and recuperating at home, and I thank him for going to such great lengths to help me forget that yet another joyous holiday season was upon us - sans baby. So, thanks dad! ;-) 

     There have been several years during which my husband and I have stated, on New Years Eve, that "next year may be the year we finally have a baby!" Every year has resulted in nothing. So, this year we made a mindful decision to not say those types of things, because we know how quickly time goes by when you are living cycle-to-cycle, and how painful it is when yet another year has gone by.

     New Years Day we found ourselves out to an early dinner at our local Chinese food joint. I hopped into bed and it was 11:59pm on the dot. I just said "fuck 2015," pulled the covers over my head, closed my eyes tight and tried to ignore the celebratory fireworks in the distance.

 Despite the immense challenges 2015 brought, I'm super grateful for my (overall) health, the health of my family and friends, and that we received coverage for IVF medications. So, even though it didn't bring us our baby, it wasn't a total loss. Going forward, we hope to

 So, for 2016, I have made no resolutions. I have learned my lesson and no longer have high hopes. Instead, I'm hoping to focus on the present, maintain mindfulness, and revel in the little victories that are thrown our way. For better or for worse, we have made it another year in Infertility Land, so cheers to that and Happy 2016!!!!



    How did you celebrate the New Year? What are your goals for 2016?