In October 1988, President Ronald Reagan proclaimed October as National Pregnancy and Infant Loss Awareness month. In 2006, the U.S. House of Representatives passed a resolution making October 15th Pregnancy and Infant Loss Awareness Day. Through my infertility journey, I have encountered many strong women who have dealt with some form of miscarriage or pregnancy loss. These women (and their supportive partners) are your friends, your neighbors, your co-workers. Chances are, you have no idea they are even suffering because they are doing so in silence. Hard to believe when life is a blur of Facebook and Twitter, and everything seems so very Pinterest-ing. How is it that pregnancy loss is still so taboo? I don’t have the answer to that, but this month is for you, and I’ll be praying for your hearts to be healed. You see, I am one of you- having suffered four pregnancy losses of my own. During the month of October, I will be chronicling my IVF story in the hopes that it will be therapeutic for me and for others who have yet to share their stories.
Weighing The Options
When I finished my infertility series, I had experienced an ectopic pregnancy after conceiving with the help of Clomid. After that encouraging pregnancy and with the clock ticking down my 36th year, we hit the ground running with two more rounds of Clomid alone followed by Clomid and intrauterine insemination (IUI). My husband, especially, was bummed by our failed IUI so we turned to alternative medicine for help. We did two months of fertility acupuncture (herbs and needles) followed by one month of acupuncture, Clomid and IUI. My charts were encouraging. My acupuncturist felt all the signs were leading in the right direction. My reproductive endocrinologist said I was stimming beautifully! But still no pregnancy.
With my lining thinned from repeated cycles of Clomid and me about to turn 37, the next step in the treatment cycle was IUI with injectables. This involves injecting oneself with a follicle stimulating hormone (FSH) such as Gonal F starting on cycle day 2 or 3. As the FSH stimulates the ovaries more aggressively, more follicles are developed and there is the potential to ovulate more than one egg. This increases the risk of multiples including triplets. Yikes! Suddenly, I had a flashback to Octomom, and I definitely did not want to be her. In my age group, the relative success rate for IUI with injectables is 15-20% per cycle, and the projected cost is $2500-$3500 including drugs, monitoring and the procedure itself. That’s quite a hefty price tag for one shot at a pregnancy.
Fortunately, the informative lady in the billing department of my RE’s office was kind enough to remind me of an IVF study for which I qualified. Dr. S had mentioned it to me eons ago when I was not at all ready to think about IVF. The typical cost of IVF including doctor fees, hospital costs and medications is $12,000-$17,000. This study cut the cost in half with a 30-35% chance of success for a fresh cycle and the chance to freeze any remaining eggs for future frozen cycles. The study’s goal was to prove that Afolia (a drug already being used for IVF in Europe) was just as safe and effective as Gonal F, the gold standard in the U.S. The study was in its third and final phase before being FDA approved, so I felt it posed little risk to my personal health. Besides, everyone knows I love a bargain. Perhaps I would also be playing a small part in introducing competition to the marketplace, thereby decreasing the future cost of IVF??? One can only hope.
The Waiting Game
For the next few days, I ran around like a banshee getting multiple vials of blood drawn, yet another HSG, a pap smear and attending couples IVF orientation all in the hopes of qualifying for this study. I passed with flying colors! Now the only thing standing in the way of me and my study money was an antral follicle count i.e. the number of follicles measured by a baseline day 2-5 ultrasound. The study said I had to have at least 10 but no more than 20, and I had no idea what my number would be. To make things worse, the study coordinator could be reached only via email. I would email her cycle day 1 and check my email obsessively for her response. The first month, my cycle occurred too close to Thanksgiving, so I was only able to do more blood work, which also turned out great. The second month, my cycle occurred one week before Christmas, and the study coordinators had closed to study to further participants until after the holidays. Come on! I was getting antsy. The third month, I finally had a win. In January, I had my first study visit and my antral follicle count was perfect! I was promptly started on birth control pills to suppress my ovaries and allow the follicles to get in sync. Being in a study requires a lot of baselines so I had what seemed like a million tubes of blood drawn, but aside from that, the first month was easy peasy.
And So It Begins
Approximately three weeks after starting on birth control, I had my study 2 visit. There was another ultrasound to make sure I had no cysts and was ready to begin Lupron for down regulation. Lupron is a drug often prescribed to men with prostate cancer or women with endometriosis or fibroid tumors. It’s off label use in IVF is to shut things down, so to speak. You start Lupron injections approximately 7 days before your period is due and continue it throughout follicle stimulation to prevent ovulation. This would involve injecting myself in the belly every morning, and was rather intimidating. DH (dear husband) came with me to learn how to give the injections just in case I wimped out. I did the opposite. I essentially stabbed myself thinking the needle had to go all the way in when, in fact, I only had to inject it far enough to release the drug. Practice makes perfect.
DH and I also signed our lives away at study visit 2. Since IVF produces embryos- each a potential life- there are a lot of ethical considerations. You must decide whether you will send your embryos to long-term storage if not used within six months. You must also decide what to do in the event of leftover embryos that you do not intend to use- will you discard them or donate them to science or another couple for potential implantation? What happens in the event of death of one or both spouses? What do you do with the embryos if you, as a couple, decide to divorce? These are some heavy questions folks!
For the next 11 days, I gave myself a Lupron injection at precisely 6:50 AM every morning. Then, I had another ultrasound and more bloodwork to ensure my hormone levels were appropriate to begin FSH. On day 12, I was cleared to begin stimulation and was randomized to the control group. This would mean I would be getting injections of Gonal F- the tried and true FSH drug. While I did feel a little less important than had I been randomized to the experimental group, it was somewhat of a relief to be doing things the “proven” way. The big difference with the study protocol is that they require you to use a low dose of FSH for five very long days before the dose can be increased to the usual 450 units. This is to avoid study drop-out due to ovarian hyperstimulation syndrome (OHSS), a potentially dangerous condition I also wished to avoid. I continued to inject myself with Lupron in the morning and the Gonal F pen in the evenings. I was not a big fan of the pen method of drug delivery. You must dial the dose and then press the button pretty hard to release the medicine into your belly. Once the dose is dialed, there is no going back. I was so fearful of messing up that I pretty much watched the instructional video every time I did my injection. You can watch it here.
Though I alternated my Lupron and Gonal F injections from side to side of my abdomen, I was one big bruise by the time they upped my dose. I stimmed for a total of 12 days, and by the end, I actually had a small hematoma on one side of my belly- probably from pushing the pen down too hard. Injections suck. May I never get insulin-dependent diabetes! As I stimmed, I had several ultrasound visits to keep track of my developing follicles. I was doing awesome. My estrogen level was great. My lining was super thick. We were keeping our eye on 21 follicles by the last visit. Some would inevitably be too mature or too small by retrieval, but I was psyched. The study required that I implant two day 3 or day 5 embryos, and I was hoping to have leftovers to freeze. Come on frosties!
When enough eggs are deemed ripe, you have more blood work to check estrogen and progesterone levels. The nurse then calls you with the results and the timing of your trigger shot. The trigger shot, called Ovidrel, is essentially a dose of the pregnancy hormone HCG. It tells your body it is go time. Egg retrieval is scheduled for exactly 48 hours after the Ovidrel injection so they can retrieve your eggs before you have the chance to ovulate.
When my nurse called me to give me the time of my trigger shot, she also had bad news. My progesterone level had prematurely risen to 1.8. It needs to be <1.5, or it is thought that the endometrial lining has gotten out of sync with the follicles and the chances of implantation are poor. My fresh transfer would have to be cancelled, and this meant I would also be dropped from the study. A million thoughts were swirling around my head as my nurse attempted to give me my final instructions. My egg retrieval was still scheduled for that Wednesday, and I would convert to a frozen cycle after my next menstrual period. Were they going to take back my study money? No, she assured me. None of this was my fault, and all my information would still be included in the study. We prefer frozen cycles, she said encouragingly. Still, I cried so hard in telling my husband over the phone that he left work early lest I fall to pieces. To make matters worse, at this point, my belly was very swollen from all the developing follicles, and I was feeling pretty awful. They were fearful that I may develop OHSS, so they prescribed a medication to lessen the side effects, which would surely worsen after trigger. Did I mention that we were also in the middle of a whole house renovation, and I was presently sleeping on a mattress on the floor of my daughter’s play room and living out of her closet? I nearly wished for the earth to swallow me up whole and relieve me of this misery, but I could not. I had 48 hrs to pull myself out of this hormone-induced darkness and wrap my head around the change in plans. I promptly stabbed myself with Ovidrel and encouraged my follicles to grow, baby, grow.
I’ll tell you all about my retrieval next time around. For now, everyone else is sleeping, and so should I. . .