Infertility

The Pursuit of Sleepless Nights


Why am I sharing so many personal details about our experiences over the past 2 years? 

I have contemplated this many times throughout this journey, and before today I wasn't ready to share our story. Meanwhile, I didn't hesitate to scour the internet to research and learn more about this process, many times landing on other's blogs and reading about their experiences. I have learned so much from others who were navigating infertility. When we don't know what we don't know, we don't know what to ask. The doctors don't know what we don't know, therefore they don't know what we need help understanding and what to elaborate on. Until I started reading about other's experiences, I wasn't really sure when to ask questions, what questions to ask, and when I needed to push back or be my own advocate. I discussed this with my husband, and explained that I felt selfish by not opening up and sharing the details of our journey. You never know who you might be helping, especially with my unique case. 


::Wedding Bells::

06/03/2018

A month before I turned 33 years old, my husband and I were newly-weds. We had been dating for a few years and had already discussed our future plans, and we were both excited to start a family. Realistically, we were in no "immediate" rush, as we had just celebrated a beautiful wedding followed by an incredible honeymoon, and were also planning to buy our first home together. Biologically, we also knew that we really shouldn't take our time, since I was almost 33, and we were hoping we could have a couple of kids. 


We just expected that we would continue working hard and enjoying life, and that it would just happen in time. We honestly were and still are living our best life. Infertility really didn't "change" anything for us. It presented us with some tough decisions, but if anything, going through this together has only made us stronger. We are incredibly fortunate to be blessed with our careers, which have allowed us to be in a financial position to navigate infertility.



01/2019

After 8 months of trying to conceive with no luck, I scheduled an appointment with an OB-GYN. The rule of thumb is generally to try for a year, but I also was concerned about the fact that I would be turning 34 in July. We had been using ovulation test kits, being sure we were well aware of my LH surge every month, etc, etc. At that time, my cycles were a bit long, generally 34-35 days (sometimes longer) with an LH surge occurring consistently around day 22, which is pretty late. One month I detected two different surges. I explained to the OB-GYN that I had concerns about my age and abnormal cycles, and that I was looking for guidance as to whether there was any testing I should be pursing, medication I should consider taking, etc. I went on to share that ever since I was a teenager, I have had abnormally heavy, long, and painful menstrual cycles, yet I have never found a doctor who was concerned enough to do more than recommend that I take ibuprofen. My mother had severe endometriosis, which resulted in two surgeries (10 years apart), one involving the removal of a Fallopian tube. While this was later in life for her, my symptoms always worried her, as they were very similar to hers. In my late 20's, a doctor had recommended that I use birth control as a method of regulating my cycle, and he was right, it did reduce the pain, length, and severity of my monthly cycle. I stopped taking birth control a few months before our wedding, and that was when the abnormal cycles began again.

After listening to my concerns, the OB-GYN told me to schedule a follow-up appointment with her in 4 months if we hadn't conceived naturally yet. She didn't seem to share any of my concerns. Honestly, at this point, I was OK with that advice and was actually relieved that she wasn't concerned. Unfortunately, it turned out that taking her advice was a mistake. Ladies, please be your own advocate. Be prepared to set the expectation of what you need your doctor to do for you. What was it that I needed from her? I needed her to respond to my concerns immediately and order diagnostic testing to perform a preliminary fertility evaluation. Time was of the essence even more than I ever could have anticipated. At that point, I had no idea that I was a simple blood test away from some life changing information.

Anyway, life went on, and in the interim, we closed on our first home together! Four bedrooms, 2.5 bathrooms, nearly 3,000 square feet. Way more house than we needed for the two of us, but we had plans to fill those bedrooms...


Diagnostic Testing, Finally!

5/31/2019

Fast forward 4 months later, in May of 2019, I returned to the same OB-GYN who proceeded to order day 3 blood work. The results follow:
  • Anti-Mullerian Hormone (AMH): Normal
  • Hemoglobin A1c: Normal
  • DHEA-Sulfate: Normal
  • Testosterone, Serum: Normal
  • FSH, Serum: Normal
  • Prolactin: 66.7 HIGH
  • Estradiol: Normal
  • TSH Rfx on Abnormal to Free T4: Normal
So I get my blood work results via the patient portal, I see this "high" prolactin, and I immediately start researching to understand what would cause this. After a few hours, I had a "self-diagnosed" benign prolactin producing pituitary tumor. I know, this is exactly what you are not supposed to do, but we are human, and this is what we do. There were other potential causes, and I was assuming worst case scenario, but only because the other potential causes didn't seem like they could apply. My metobolic panels always come back great and I've never had any indication of thyroid issues. In my research, I also learned that high prolactin causes a luteal phase defect, preventing the uterine lining from forming properly to allow for implantation, thus causing infertility. So, that explains that.


6/07/2019

I met with my OB-GYN who explained that there were a few potential causes (which I was already aware from all of my reading). To be certain, she ordered a repeat test. The result:
  • Prolactin: 73.9 HIGH


Hyperprolactinemia

6/14/2019

At this point, I was referred to an endocrinologist to further assess the cause of the hyperprolactinemia, but the one that was recommended was all booked up for the next few months. That wasn't going to work for me, as I had already convinced myself that I had a brain tumor. I'm pretty sure I called every endocrinologist in the Denver metro area, and within a week, I managed to get an appointment scheduled. Upon the first visit, my endocrinologist ordered the following blood work.
  • TSH+Free T4: Normal
  • Comp. Metabolic Panel (14): Normal
  • Prolactin Zone: 91.9 HIGH
  • Prolactin; IGF-1: 96.9 HIGH
  • 17-OH Progesterone LCMS: Normal
  • Growth Hormone, Serum: Normal
  • Insulin: Normal
Ok, so these results come back, and there's no indication of a thyroid issue or any other hormonal imbalance, which just furthered my thinking "ugh, I really do have a brain tumor...?". At this point, I am also kind of mad, because I could have let a brain tumor sit un-diagnosed and untreated for 4 additional months because my priorities and concerns didn't align with my doctor's priorities and concerns. I reconvened with my endo after the results were in, and he agreed that we needed to move forward with scheduling an MRI.

Macro-Prolactinoma Diagnosis

6/21/2019

Things continued to move quickly, and within another week, I was getting prepped for an MRI. Within two days from the completion of the scan, my endocrinologist reached out and informed me that the radiology report confirmed a pituitary macroadenoma. He explained that while it is rare for a woman to have a macroadenoma, mine was right on the border of micro and that they are benign and not life threatening 99.9% of the time. I had already done my research and was again prepared for everything he told me. Basically, unless I begin to experience headaches or vision issues, we would not consider surgery and would treat it with an  oral dopamine agonist medication, Cabergoline. He explained that this medication should likely achieve two things:
  • Normalize prolactin levels, restoring fertility (assuming high prolactin was indeed the only infertility factor)
  • Shrink the tumor, over time (in most cases)


7/2019

I spent the month of July dealing with consistent headaches while adjusting to the medication and the drastic hormonal changes. The emotions were REAL! Thankfully, I have an incredible husband, supportive family, and can't say enough about leadership at Charles Schwab for always putting the well-being of their workforce members first.

At this point, infertility really became the least of my concerns. The thought of potentially needing a tumor surgically removed from my brain one day suddenly had all of my attention. The headaches that came along with the meds were almost welcomed, because it gave me hope that it meant the tumor was shrinking. Completely unfounded hope, but you'd understand if you were told there was something in your brain that didn't belong there. It's just a tad unsettling.


Back in the game?

8/6/2019

A month had passed since I started the meds, and it was time to follow up with my endocrinologist and check on those prolactin levels.
  • Comp. Metabolic Panel (14): Normal
  • Prolactin: 14.1 NORMAL!!!
Happy day!  The endocrinologist assured me that every time he has a patient in my shoes, they start on this medication and within months they end up conceiving. He did of course explain the risks that now come along with me becoming pregnant, as I would be advised to discontinue the Cabergoline medication during pregnancy and breastfeeding, prolactin levels would rise (as they do during pregnancy), and the tumor would likely grow. We would monitor for symptoms of chronic / severe headaches and / or vision issues, and worst case scenario, I could opt to take the medication during pregnancy if the symptoms became unbearable. To this point, I have had no vision issues or chronic headaches, and am feeling optimistic that I could get through it without meds if any of these were to occur during pregnancy. Surgery obviously would not be an option during pregnancy. I could also remove the option of breastfeeding if I needed to begin taking the meds postpartum. None of this sounded like horrible news.


9/10/2019

The last I spoke to my OB-GYN, in late June, she had informed me that she would keep her eye on my blood work results and would follow up with me once we got the prolactin levels down so that we could proceed with additional testing like the day 21 progesterone test, and further discuss any additional testing we might want to do to rule out other potential causes of infertility. It had now been a month since my levels were under control, so I reached out to inquire about next steps with her. I was informed that she was out on maternity leave herself, but that she had left instructions for someone to follow-up with me. Apparently, I had "slipped through the cracks". It was suggested that at this point, I should just wait a few weeks to meet with her when she returned from maternity leave. I had already felt that concerns about my fertility, or lack there-of, were being dismissed by this doctor and practice, so I finally made the decision to switch doctors. It was a very difficult decision to make, and I wasn't sure at the time if it was a bad move switching doctors & practices in the middle of a fertility evaluation. In my case, it was absolutely the right decision.


10/2019

"Just relax, it will happen when you're not trying!" Yes, of course we've heard it all too. Honestly, it doesn't bother me. I know there is no mal-intent when people make comments of the sort. Also, I don't expect everyone to have the same perspective on things in general in life. Our experiences shape us, and ignorance is bliss. The best we can do is have awareness of our own ignorance and better ourselves. There's no gain in getting yourself down about others opinions, advice, etc. I get that some people are very devastated about infertility. Honestly, I am not. I will say, it has been a big inconvenience, an expensive one at that. I have grown from this experience, and regardless of the outcome of the choices we make while navigating infertility, the personal growth has already made it worth every ounce of effort.

Anyway, believe me when I tell you, we have both been relaxed throughout most of this process, and again, living our best lives. Infertility has in no way defined us or our life in a negative way. We are both killing it in our careers, have taken multiple trips abroad in the past 5 years, and have plenty of fun right here in Colorado and traveling around the US to visit family. In October, we had a much needed break from doctors appointments and work, and we spent a couple of weeks traveling central and northern Italy. For part of it we actually stayed at an all inclusive culinary Villa in the Sabine Hills, so it was overall an incredibly relaxing trip. We thought maybe this would be our lucky month now that the prolactin levels were normal and we were taking that "just relax" advice to the fullest, but as those of you in the infertility world know... it's just not that simple!



So, we're officially "1 in 8"?

11/23/2019

I met with my new OB-GYN who ordered the day 21 progesterone test, checked in on my prolactin levels & metabolic panel, ordered the Rubella & Varicella testing, and provided me information about having a prenatal genetic screening performed.
  • Progesterone: Normal
  • Comp. Metabolic Panel (14): Normal
  • Prolactin: 13.8 Still Normal!
At this point, the doctor tells us that there is no obvious cause for the infertility. She suggested that we could continue trying naturally, and if it doesn't happen by the time I turn 35, we should consider seeking the assistance of a fertility specialist. We were already "1 in 8" at this point, but I was still convinced that it was something that was within my control to fix without seeing a fertility specialist or considering fertility treatments. This was the point where I realized I was probably wrong, but also just wasn't quite sure that I was ready for that step yet. My husband was supportive and didn't push on the idea of seeing a specialist right away. We agreed that we'd get an MRI on the books for the 6 month tumor check in.

Tumor check-in

12/21/2019

MRI #2 to check on the prolactinoma. I was certain it would have decreased in size since the prolactin levels had been normal for nearly 6 months at that point. Unfortunately, a few days later, on Christmas Eve, I received the unfortunate update that it was either the same size, or potentially even 1 mm larger. This was disheartening, as I had really hoped there was a silver lining in there that we had given the tumor a decent amount of time to respond to medication. My endocrinologist wasn't concerned by the lack of change over a 6 month period, however, and told me to continue my medication as prescribed.

The IVF Journey begins...

2/20/2020

In February, we bit the bullet and decided we had nothing to lose by having a consultation with a fertility doctor. We are incredibly fortunate to have had CCRM Colorado as an optional clinic. While I'm sure they have many skilled doctors at the clinic, Dr. Schoolcraft (a top fertility doctor in the nation), is located here in Lone Tree, CO. Conveniently, his clinic is located right next to the Schwab campus where I work, and was able to take us on as a patient. People come from all over the world to see this doctor. He founded CCRM, which is now a nationwide clinic, and has published books about infertility. He's an impressive person to say the least.

While CCRM is more expensive than some of the other local clinics, they are known for their state-of-the-art labs, which can make or break your chance of success. The thought of IVF was daunting and honestly, at this point, wasn't even something I was 100% sure I was ready to do, but we decided if we were going to go for it, we were going with CCRM.

When we met with Dr. Schoolcraft, he initially suggested that we consider starting with a few rounds of IUI. It seems like this was just the standard protocol for couples with unexplained infertility. At this point, we didn't have to make a decision one way or another, as we would first be performing baseline testing. 

Over the next few weeks, the following testing was performed:
  • Day 1-3 Bloodwork: Normal
  • HSG: Normal
  • Baseline & 3D Ultrasound: Normal
  • Day 5-12 Bloodwork: Normal
  • Semen Analysis: Normal
  • Ultrasound - Follicle Check: Potential Cyst?!


3/13/2020

After the baseline testing was completed, we had a regroup with Dr. Schoolcraft who explained that the potential cyst was actually no big deal, that it was likely a functional cyst and that it is just something that happens from time to time and resolves itself over a few cycles, but he did state that an IUI / IVF cycle couldn't commence until it resolved itself. 

At this point, however, Dr. Schoolcraft did re-visit his concerns about my macro-prolactinoma, and told us that he would not proceed with fertility treatments of any form without clearance from my endocrinologist, as well as clearance from a maternal fetal medicine specialist (MFM) who would agree to oversee any resulting pregnancy. While putting my health first was absolutely the right decision by him, I took this news pretty hard. All along, my endocrinologist had encouraged pursuing pregnancy and did not seem concerned in the least bit that I would be putting my health in any kind of major jeopardy in by doing so. This was going to cause some delays, as now I had to find a MFM with availability to accept me as a patient, who was willing and able to meet with us during a global pandemic  as COVID-19 was rapidly spreading through the US at this point. I prayed and prayed that once they did review my radiology reports, that they were supportive of our decision to pursue pregnancy, and would be willing to oversee the potential pregnancy. Up to this point, I was still sensitive and emotional about the tumor, and I certainly wasn't ready to hear that it would be the deciding factor of how we proceeded on our infertility journey.

This delay in proceeding with treatments of any kind was a blessing in disguise...

Choosing to skip IUI and go straight to IVF

3/19/2020

::Enter Non-Essential Medical Procedures Halt beginning 3/23/20 due to the COVID-19 Pandemic::

First and foremost, I literally cried for those who had their cycles interrupted by this. There were A LOT of you. Completely devastating. I understand why the decision was made, and I understand that the impact of this pandemic spread well beyond the infertility community, but I just couldn't imagine the financial and 
emotional stress that it added to a process that is already inherently burdened with stress. To those of you whose cycles were impacted by this, you are the true warriors.

In response to this news, and the need to seek approval from an MFM to proceed with treatments, we started doing some additional research to determine if we should really start out by trying IUI. We had a phone consultation with Dr. Schoolcraft to discuss IUI vs IVF so we could better understand whether skipping directly to IVF once things got back to normal could be a better option for us. I revisited my concerns about endometriosis (which at this point still has not been diagnosed), and I asked him if there was value in me having a laparoscopy performed to either diagnose / rule out endometriosis. Based on the following points, we decided that going straight to IVF was the right decision for us:
  • While IUI is cheaper and doesn't require egg retrieval surgery, success rates with IUI are lower. Also, if I do have endometriosis, it would likely hinder the probability of success with IUI.
  • IUI still requires taking hormones to stimulate follicle growth. The least amount of hormones we have to put into my body, the better, considering the tumor. This further justified the decision to not spend cycles and money on IUI.
  • If I were to have a laparoscopy performed and have endometriosis diagnosed, it could just result in the need to go with IVF anyway.
  • Minimizing the risk of miscarriage is important for my physical health, as the more time I spend pregnant, the less time I spend on my medication, and the more time the tumor has to potentially grow. With IVF, we would have the option of performing comprehensive chromosome screening (CCS) on the embryo prior to transferring them to rule out any potential chromosomal abnormalities. Since a majority of miscarriages are due to extra / missing chromosomes, performing an IVF ICSI cycle with CCS seemed like the best approach for us to take.


Genetic carrier screening

3/24/2020

We received some good news during trying times: My genetic carrier screening results came in and everything was negative! There was no need for my husband to have this testing performed since I was not a carrier for anything. One more box checked.


MFM clearance to pursue fertility treatments

4/1/2020

After being cancelled on and rescheduled multiple times with the first MFM, we landed an appointment with a different MFM who was already setup for telehealth visits. The doctor was wonderful. She went over the risks of pursuing pregnancy with a prolactinoma (all of which we were already aware of), and explained how the potential pregnancy would be monitored by their practice, and ended the call by telling us that she would be "happy to have us as a patient". Yay! At that point, we just had to "wait out the pandemic" and hope things would return to normal ASAP.


4/14/2020

My annual physical examination appointment with my PCP was converted to a telehealth visit? This was almost amusing, but sure I rolled with it because it was one of the boxes that I needed to check for CCRM before I could proceed with IVF. Unsurprisingly, we didn't accomplish much via our video chat, and we agreed to reconvene for rescheduling when the time was right.


IVF 1 Day Work-Up

5/26/2020

At this point, non-essential procedures and diagnostic testing were again allowed, so we proceeded with our IVF work-up.
  • Doppler Ultrasound: Normal
  • Hysteroscopy: Normal
  • Communicable Disease Testing: Negative
  • Other Blood Work: Low Vitamin D (easy fix, OTC supplements & will be rechecked prior to embryo transfer)
  • Semen Analysis: Normal
After the testing, we met with the genetic counselor to discuss our family history. She explained that on top of the CCS testing on any potential day 5 blastocysts, we could opt to have pre-implantation genetic diagnosis (PGD) performed as well to test the embryo for inherited cancer mutations. This was suggested due to my prolactinoma potentially being hereditary. For us, this additional testing didn't seem necessary, as my tumor is not life threatening. I had the sense that the genetic counselor very much respected and supported our decision here. Given the choice of being a discarded embryo or living a really wonderful and otherwise healthy life with the caveat of an annoying little brain tumor... well I am biased, but I choose life! 

Finally we regrouped with one of the nurses, who gave us an overview of what the IVF calendar would look like and a high level of what to expect. 

IVF Financial Consultation

5/29/2020

We met with CCRM's finance team (via phone) who went over a breakdown of all of the costs for our cycle, what could be billed to insurance, what could not, and we were provided an estimate of the medical costs which we would be responsible for. This did not include the prescription medication, which would vary in cost based on our treatment protocol as well as the pharmacy used. Keep in mind, every clinic's costs & packages will vary, and every couple's treatment protocol will vary. This doesn't include any of the costs of the baseline testing and one day work-ups. Also, medical billing is all over the place. The amount that a clinic might bill to an insurance for a procedure can differ greatly from what they would charge a patient who is uninsured, also known as a "cash payment" cost. In our case, we do have significant insurance benefits towards our treatment, thanks to my employer, so we pushed to have *nearly* everything that was billable billed to insurance. Fortunately, we were not on the hook for the full cost that you are seeing outlined here. At this point, we were only $38 away from meeting our $5,900 out of pocket maximum for the year which is required before the fertility solutions benefit kicks in at 100%. Our benefits allow up to $25,000 towards pre-authorized medical fertility treatments and $10,000 towards pre-authorized fertility prescription medications (both the lifetime max benefit). We kept a very detailed spreadsheet of all of the financials, which was incredibly helpful for us. It becomes a numbers game, especially with the specialty meds, when deciding what you want billed to insurance and what makes more sense to opt for the cash rate. 

Here's the sheet containing our projected IVF medical costs;



IVF Prescription Medication

5/28/2020

We received our preliminary IVF Calendar, which was tentative based on Cycle Day 1 (CD1) of the Priming Cycle, LH Surge of the priming month, CD1 of the Stimulation Cycle, and the results of multiple ultrasounds and labs during the stimulation cycle. We also received a list of medications that we would need to order, some from our preferred local pharmacy, and some from a specialty pharmacy. We coordinated with the pharmacies and our nurse to get all of the proper medications queued up for order, but held off on actually scheduling a shipping date at this point, as once they are shipped, they cannot be returned or refunded and these medications are extremely expensive. When all was said and done, we had over $13k in specialty medication delivered for our priming and stimulation cycle, some of which required refrigeration.

Here's the sheet we used to track our specialty prescription medication costs. We have additional columns capturing insurance claim numbers, claim status, etc. You can see where we opted for the cash price for the 300 unit Gonal pen, the pregnyl, and 3 of the cetrotide injectibles. Again, it just comes down to playing the numbers game based on any available insurance benefits, etc. 



6/2/2020

Attempt #2 of my Annual Physical Examination was successful. This time, I actually found a new PCP because my original doctor left the practice due to covid-19 and the one who I was reassigned to was booked out for months. My new PCP walked in, looking VERY pregnant, and within minutes of introducing ourselves, I knew switching doctors was meant to be. It turned out that she was about to have her first baby, thanks to fertility treatments that she had received at CCRM Colorado. Small world :)

6/5/2020

I took a quick trip back to the east coast to visit my sister & her family, as well as my parents. Due to the pandemic, I wasn't sure when I'd be able to make it back there next, especially if we have success with IVF, so I masked up and took the flight. Remember how I mentioned that I have an incredibly supportive family? My sister is one of the primary reasons I took the plunge and scheduled that initial consultation with Dr. Schoolcraft. My husband is very sweet, so he is supportive in a very different way. While eager to start a family, he hasn't pushed on me to do any of this, and was willing to continue leaving it to fate if that was what I wanted. He always reassures me that at the end of the day, we have each-other, and that's enough. My sister on the other hand, well she is your standard strong, pushy, Northeastern Irish-American-Catholic girl (and I LOVE her for it!) She wanted me to get this show on the road, so much so that she kept telling me that she was prepared to carry a child for me if needed.

When I arrived, she greeted me with a bag of gifts to help us through the IVF cycle, as well as the most thoughtful note.



Happy Birthday to me 🎉

7/2/2020


One day before kicking off the IVF priming cycle, I turned the big 35 (a pivotal aging milestone in the infertility world). How appropriate. You can thank my sister for managing to make sure that I celebrated my birthday in style, all the way from the east coast.  I had never been so relieved to be in mandatory quarantine 😝

I "splurged" and enjoyed a beer in the afternoon, a glass of wine with dinner, and cake for dessert on my birthday. I had been otherwise avoiding white flour / refined sugars and primarily sticking to whole wheat/grains, fruits, veggies, lean proteins / fish, healthy fats, etc, leading up to the start of the Priming cycle.


IVF Priming Cycle Start

7/3/2020

I was so incredibly nervous about that first cetrotide injection, but in the end, it really was not bad at all. My husband was right there by my side for every injection, eager to prep the injections and help with whatever I needed.



I built out a very detailed spreadsheet for tracking my medication schedule, protocol updates, labs, and ultrasounds. I found it to be much easier to track all of the medications than the format that was provided by the clinic. I also sent my first version of this spreadsheet over to my assigned nurse so that we could use it for reference while she clarified some questions I had about the tentative calendar.



My mother-in-law also ordered this really awesome caboodle and prep pad for organizing all of the medications, syringes, etc. At first, I was overwhelmed because I couldn't even fit half of the medications that I needed for the whole process into the caboodle, but once we got into the flow of things, it was really nice to have.



IVF Stimulation Cycle Start

7/7/2020

CD1 was here, and it was time to get into one of the most intense parts of this process. Never in my life have I greeted day 1 of my period with such enthusiasm.

7/8/2020

Before starting the stimulation meds, on CD2 I had an ultrasound to do a follicle check, and had labs to assure that my estrogen, progesterone, and HCG levels were all normal before beginning the cycle. That afternoon, we received a call from our nurse with the all clear and approval to proceed with administering the stimulation medications the following morning, as outlined in our IVF Calendar. 

Shots, Shots, Shots (not like the ones from your early 20's!)


7/13/2020

4.5 days of shots down, and so far, smooth sailing. The first ultrasound went well. The tech had a count of 14 follicles, all maturing at the same rate. Later that day, we received a call from our assigned nurse telling us to reduce the Gonal-F injection by half, and to re-introduce the daily Cetrotide injections. Up to 3 shots a day, lucky me!


7/15/2020

Another positive ultrasound, 15 follicles measuring over 12 mm. The nurse on duty said "You're looking really good, good job!" (Not that any of this was in my control, beyond following the instructions and administering the meds as directed). After the blood work results came in that afternoon, we received a call from our assigned nurse telling us to continue on the same dosages of medication until further notice. 


7/17/2020

16 follicles measuring within range, another positive update. No changes to meds.


7/18/2020

25 follicles counted during my ultrasound that could potentially be contenders. Wait, what happened over night?! Now it felt like we were getting into the danger zone, where more isn't necessarily better. More follicles = more estrogen = more risk for Ovarian hyperstimulation syndrome (OHSS). My estrogren levels came back at 4,500. I mentioned to the nurse on duty that I was never instructed by my assigned nurse to stop using the estrodial patch, and she looked a bit surprised and concerned. She informed me that I definitely did not need it at this point and should remove it right away, and so I did.

That afternoon, I received an updated from the nurse on duty who advised that there would be no change to Gonal-F, but to cut the menopur dosage in half for the following morning and that we would likely trigger the following day.



Trigger Protocol Change & OHSS Risk

7/19/2020

On Sunday morning, post ultrasound, the nurse on duty mentioned we were still counting ~25 follicles which were within the appropriate size range or close, and that we would likely expect to trigger that afternoon. I mentioned to her that my estrogen was pretty high the day prior, and after looking back at the previous days notes, she agreed and informed me that we likely would trigger with Lupron only, and to alleviate the risk of OHSS, likely would not be performing the Pregnyl (HSG) trigger. She let me know that the doctor would make the final call based on the lab results that day.

When we received the update that afternoon, I was informed that my estrogen levels were at 6,600 and that we would indeed be triggering that evening at midnight, but with Lupron only, and then we would do a second lupron injection 12 hours later. We were instructed cut the Gonal-F dosage in half again, and administer it that evening for the last time.

The last minute changes to the originally outlined trigger protocol, paired with the high estrogen causing concerns for risk of OHSS suddenly had me incredibly stressed out. I was also incredibly concerned that swapping that estrodial patch out with a fresh one every other day throughout my entire stimulation cycle was detrimental to my treatment, and I couldn't find clarification as to whether it may have added to the high follicle count & estrogen despite my efforts to research and understand the potential impact. We requested to have a check-in with a nurse manager as well as a quick cycle regroup with Dr. Schoolcraft the following day to help ease our concerns about the OHSS risk and answer some questions about any potential impact to the cycle, egg quality, etc.

We waited up until midnight, and administered the first lupron trigger shot. At this point I was pretty bloated and relieved to be one shot away from being done with injections... I was more than out of fresh places to jab. But hey, 33 shots down, one to go!


7/20/2020

Monday morning, I had labs only. At noon I administered my final shot, lupron trigger #2. 

Just after noon, a nurse manager reached out to us to discuss our concerns and answer questions. She informed us that based on the blood work results, the lupron trigger did its job and that we were on track for our egg retrieval surgery which was scheduled for the following morning. She put most of our concerns to rest and assured us that we had a "beautiful stimulation cycle". 

That afternoon, we met with Dr. Schoolcraft who reiterated that the risk of OHSS was alleviated by not using the HCG trigger, and he further mentioned that one third of their triggers are lupron only. He went on to explain that this is the trigger method that is used with CCRM's egg donor's, who yield some of the most successful results. He also put our concerns to rest about the estrodial patch, stating it would not have promoted additional follicle growth or contributed to the @ risk for OHSS scenario that we fell into. 

At the end of the day, every stimulation cycle is different and the doctors can never be sure how your body will or will not respond to the medications. If there's a change in protocol, this probably just means that the doctor is doing his or her job. Don't panic and stress yourself out like I did :) I commend CCRM and Dr. Schoolcraft for their swift response to our concerns, as well as their professionalism. Our excitement and hopes for a successful egg retrieval surgery had been restored.


Egg Retrieval Surgery

7/21/2020

During the pre-op prep, the nurse first outlined the importance of monitoring for OHSS symptoms over the coming days, despite the fact that we removed the HCG trigger from my protocol to help prevent this, there was still some concern expressed due to the number of follicles and high estrogen level.

The surgery itself was fast. Before I knew it, I was awake and in the recovery room with my husband by my side. The embryologist stopped by to let us know that 18 eggs were retrieved during surgery, but that it would be a few hours before they knew how many of those were mature, and at that point they would perform ICSI. ICSI is required by most clinics when performing CCS testing, as to prevent the test results from being skewed by genetic residue which could occur with the standard fertilization method. We did pay significantly more money by opting to have the CCS testing performed, as it's not covered by insurance. For us, the extra cost was worth reducing the chance of a miscarriage due to chromosomal abnormalities, as the more time I spend pregnant, the more potential impact on my physical health. Because the results of CCS testing would take two weeks, this also meant that we would not be performing a fresh transfer, and instead would be freezing all embryo that make it to the blastocyst stage while we wait for the CCS test results.

Just over an hour from the time I woke up, we were able to head home. I did take the nurses advice and continued to drink plenty of water infused with electrolytes. While I'm not really a fast food fan, we also made the infamous American IVF McDonald's french fries stop on the way home due to their high salt content which is claimed to help with the bloating and fluid retention post op. My pain level intermittently went to a 5-6 most of the day, but was manageable with a consistent dose of extra strength tylenol, paired with a heating pad, and a lot of laying on the couch. In the middle of the night, the pain shot to about a 8-9 at around 3:30 AM, and took a while to subside. I could barely move. After a few hours I was back down to about a 5, and by the end of the day, I was at about a 2. OHSS averted? Thankfully, I had no other symptoms other than the pain and swelling. 


Fertilization Report: 16 Mature eggs, with 100% fertilization!

7/22/2020

At, 9:23 AM MT the nurse called for a post-op check in. I let her know that I was in a lot of pain the night before but was feeling much better that morning. She advised me to continue using the heating pad and to of course call them right away if I was experiencing any OHSS symptoms, etc. She let us know we'd have an update from the embryologist sometime after 10:00 AM.

11:01 AM MT the embryologist called. She let us know that of the 18 eggs collected, 16 were mature, and 16 were successfully fertilized. We were speechless. We had a 100% fertilization success rate with ICSI.  Fertilization success rates with ICSI are generally 70-85%. CCRM explains it better than I do:

With ICSI, a specialized glass needle is used to inject a single sperm directly into the center of the egg under the guidance of a specially fitted microscope. The success rate of this technique varies considerably among ivf programs and is highly dependent on the skill of the embryologist performing the procedure.

Needless to say, we're impressed with CCRM and our embryologist. She made every one of our mature eggs count ❤️ 

Our understanding is that on average, 20-50% of fertilized eggs make it to the blastocyst stage. We figured that if this statistic holds true for us, we should have a really good chance at getting some viable embryo out of our first IVF cycle. Again, although we still have a long way to go in this process, we are feeling fortunate to have had an overall positive experience in our first IVF cycle.


Day 5/6 Blastocyst Report

7/27/2020

The embryologist called us bright and early on day 6 to let us know how things were going, and we got some very exciting news.

Day 5: 3 Blastocysts biopsied and Frozen
Day 6 AM: 6 Blastocysts biopsied and Frozen

She followed up by letting us know that we had more that are still in the running and will be checked on the following morning. 

Why keep day 7 blastocysts? Per CCRM:

Some embryos develop slowly and need an extra day to grow to the blastocyst stage, which is the stage when biopsy (removal of a few cells) is performed for preimplantation genetic testing (PGT). Many labs do not grow an embryo past day 5 or 6 since the process is both labor intensive and involves extra supplies and expenses. CCRM performs day 7 biopsy, when indicated, to ensure the patient has as many embryos available for biopsy as possible.

The embryologist explained that they have had healthy live births result from day 7 embryos, so there is no reason to discard them. They would be used as a last resort, but it's better than nothing in the case that the first 9 tested genetically abnormal. Every little chance counts.

9 little embryos, with a potential for more?! Incredible news!


Day 7 Blastocyst Report

7/28/2020

The embryologist called around noon to let us know that we had two final embryo biopsied and frozen. Now, at this point, we wait for the results of the CCS testing which will tell is if, and how many viable embryo we have. My understanding is that based on my age and labs, it is likely that about 50% of my eggs will be genetically normal. 🤞🤞


Comprehensive Chromosome Screening (CCS) results

8/7/2020

Our nurse called us tonight just before 6PM, as she was about to clock out for the weekend to give us our exciting news. Of our 11 Blastocysts, 7 are CCS normal! We are going to keep the details of our Frozen embryo transfer (FET) plans private for now. Best of luck to the rest of you who are on this journey ❤️



CCS Testing & Embryo Results Regroup with Dr. Schoolcraft

8/12/2020

Dr. Schoolcraft called us and asked if we had any questions about our results, etc. We asked about the embryo grading first, and we weren't incredibly satisfied with his response. He said, "Think of it like you're in school, you have 2 day 5 embryos so those are graded as an A, four day 6 embryos so those are graded as a B, and one day 7 embryo so that one is graded as a C". I questioned this explanation, as my understanding of embryo grading is that it is much more complex than that. He basically repeated himself, responding with "I told you what you need to know, you got two As, four Bs, and a C". I responded again, a bit confused and said, "Well the sheet that your embryologist provided us goes into much more detailed grading. Like are any of them "hatching" blasts?" He said "None of that matters. You have a great outcome of 7 normal embryos, most people are lucky to have 2". I really wasn't satisfied with his lack of explanation or detail about our embryos, but I wasn't sure what else to say at this point. Of course we are ecstatic to have 7 normal embryos out of a single cycle, but that doesn't discount the fact that we are interested in the quality of the embryos. We ended the call by asking how many of each gender we have, and if there was anything special we should be doing to prepare for the transfer to which he said "no nothing different than you did when preparing for egg retrieval". The call was disappointing, but we were excited that we had plans as to when we will attempt a single FET. We might reach out and request an embryo report from the embryologist so that we can get a little more information about our embryos.

IVF Cycle Report

9/1/2020

We decided to put a request in for the embryologist's embryo report for our cycle so that we could dig into the detail we were hoping to be provided during our regroup with the doctor. The results are really quite interesting and we're really glad that we requested the report! Keep in mind of the 11 which were frozen (Bx/Frz), 7 tested CCS normal and the other 4 were discarded. Of the 7 that are normal, two were day 5, four were day 6, and one was day 7. We don't know exactly which were CCS normal on this chart below yet, but we have now requested that report as well because our curiosity is piqued!





CCS Report

9/4/2020

All of the AA's were normal! We have some highly graded embryos ❤️ Here's to hoping for a successful transfer.


No comments:

Post a Comment