I was the first to go to the Doctor but all of my tests came back normal. Tim's trip revealed something called CAVD (congenital absence of the vas deferens), a genetic mutation associated with Cystic Fibrosis. In short, it's like being born with a vasectomy. With the help of ART (assisted reproductive technologies), men with this condition have been able to father biological children though IVF with ICSI (an additional procedure=more $$$). This gave us hope.
The years in between our diagnosis and when we finally sought treatment were kind of a blur. Initially, we had been told that the cost of treatment would be in the upwards of $20,000+ and we just didn't have it but we would someday. It seemed like "someday" was always on the horizon. Without fully realizing it at the time, I was growing more and more depressed as all of my friends and older sisters were constantly announcing their own pregnancies. I felt so isolated.
Tim worked on advancing his career and finally in 2014, we decided that while he went on a deployment to Iraq and I worked as much overtime as possible, we were finally in a position to pay off our bills and save, save, save so we could actually get started when he got home. We'd also been notified that Madigan now had a reproductive endocrinology clinic. This would cut our costs with the ability to get medication, lab work, scans, and the service of military Doctors under Tricare. Unfortunately, the majority of the costs are still wrapped up in the procedures themselves, not covered by insurance, which would be conducted at an affiliate clinic in Seattle. Even so, this was now within our reach.
Tim's hormone levels were normal and a physical exam gave some inclination that surgical sperm retrieval would be successful through a PESA (percutaneous epidydimal sperm aspiration) or a more invasive biopsy if need be. Luckily, the PESA was successful and three viles were retrieved, enough for three rounds of IVF. Because the retrieved sperm are so immature and not motile, an embryologist must inject each individual sperm directly into each egg (ICSI). This is why something like an IUI is not possible.
Assuming Tim's procedure would go well, I'd already started a cycle for an egg retrieval. At this point, I had become Dr. Google (common in the IVF community with all of the acronyms...sure this goes for anyone dealing with any kind of major medical procedures) and was convinced that I was starting to develop something called ovarian hyper stimulation syndrome (OHSS). Sure enough, a week before retrieval, the Doctor confirmed my estrogen levels were doubling everyday into dangerous territory. I was told that I would continue to get very sick and possibly even need hospitalization after my egg retrieval as fluid spilled from my swollen ovaries into my abdominal cavity and put pressure on my organs, particularly my lungs. This also meant that a fresh embryo transfer was out of the question. We would have to freeze whatever embryos we had after ICSI and I would need to get better. On top of all that, part of my gums had started to swell from the high amount of estrogen and even my dentist couldn't make sense of it. We decided to wait and see if it got better after my estrogen levels dropped.
On the day of my egg retrieval, the Doctor retrieved 34 eggs (an unusually high number, a good cycle usually collects an average of 8-15), 32 of which were mature. Unfortunately, the low sperm quality had a lot of impact on fertilization rates and our numbers dropped significantly over the next 5 days. On my 32nd birthday, one of our dogs had an "accident" in the kitchen and before I could wake up, our Roomba that was on an automatic timer had already painted dog shit all over our house. Moments later, the Doctor called to inform me that only two embryos survived for cryopreservation. Happy Birthday.
I continued to get sick from OHSS. Breathing was difficult and sleep was nearly impossible with such a distended belly for the next 4 weeks but luckily I didn't end up needing to be hospitalized! Bad news, my gum swelling wouldn't go down and by December an oral surgeon had to remove the inflamed tissue so I would be cleared for a FET (frozen embryo transfer).
Around this time, I had found support on Instagram. You'd be surprised by what you can't find with a hashtag. It was really nice to have other people to talk to, sounding boards for advice or experiences to learn from. I even found a few other women whose husbands had the same condition as Tim (unfortunately none in the US; Australia, Canada, and England). All of them got pregnant on their first try with IVF/ICSI and I figured we would follow suit.
Finally! I was able to do a FET cycle. On March 2, I was PUPO (pregnant until proven otherwise) with our only two embryos. Our first beta (blood draw to test HCG levels) was 9 days away but by day 6, symptoms had me pretty sure that an embryo or two had stuck around and it wasn't just the medication mimicking pregnancy. Tim convinced me to take a home pregnancy test and there was a faint line. While I was hesitant to believe what I was seeing, Tim insisted, "A line is a line!" After Google searching through forums, I had to agree with him and allowed myself a sigh of relief and a smile. Our first beta just a few days later confirmed it--I was pregnant with an HCG level of 81!
That excitement was short-lived though because 48 hours later, my next beta revealed a drop in HCG and I was told it was a chemical pregnancy (very early miscarriage). I was devastated. Months of injections, painful side effects, and emotional highs and lows. In an instance, our only two embryos and a lot of money were just GONE. Tim was out in the field when I got the news and rushed home.
Between hormones and grief, I was in a deep depression. My pain was palpable. I wanted nothing to do with any of the people I'd met through Instagram and I quickly deleted my account. I won't speak for everyone in my position but I've seen it happen a lot through support of this nature. When an infertile becomes "one of them", it's kind of a mutual separation from those still fighting the battle and a lot of "unfollowing" happens immediately after a post about someone else's BFP (big fat positive). Don't get me wrong, I'm very happy for those individuals but when you're overwhelmed by your own grief, you don't want to see cheery pregnancy posts from people you once commiserated with. On the flip side, many of those people want to move on and not feel guilty for transforming into a proud preggo from bitter infertile. Like I said, it's pretty mutual but I felt alone again. I just didn't understand, it worked the first time for all of the people I'd met whose husbands were CF carriers. THE FIRST TIME.
Seeking help from a therapist just made me more determined. This couldn't be it. That's all? Just one try? I want a baby. I want to be a Mother. I want to be like everyone else around us. I want a family with my husband. I begged Tim to do another round of IVF immediately. I didn't care how much we had to finance, I needed it. I'm not going to lie. Looking back, I was a crazy woman completely and utterly possessed. Tim had already sold his motorcycle and was working side jobs as much as possible. Since I wasn't working during treatment (my previous job was too labor intensive), I was doing what I had been for years, selling on eBay and being as thrifty as possible in our every day lives. This had to happen.
We financed another round. Because of my response the first time, I decided with my Doctor to change our protocol and use meds that were less likely to cause OHSS so we could do a fresh transfer. This protocol was safer for me but would yield fewer eggs and I was OK with that. I believed that anything different than the first round was going to be the answer as to why it didn't work in the first place.
Initially we had 15 embryos. By day five, five embryos had survived. I couldn't believe it! Since I didn't get sick this time, we were able to do a fresh transfer of two embryos. Something was different though. I didn't feel anything. The meds they put you on can mimic pregnancy so even the first time, I couldn't really tell what was real but on this one, I didn't feel any symptoms, false or real. By our first beta, sure enough, NOT PREGNANT.
I handled the news better this cycle. Mostly because I knew we had more embryos (unlike the first time) and my focus had quickly shifted to our beloved dog, Rambo. He had to have a cancerous tumor removed and shortly after that, Tim was set to deploy.
A few weeks after Tim deployed to Afghanistan, his team was hit by an IED while out on patrol. One of his teammates was killed and another critically injured. Tim was OK but I was struck with grief once again. Coinciding with the terrible tragedy, at home Rambo's cancer had metastasized. I tried to hold off as long as possible and give Tim some time to deal with the events in Afghanistan but I finally had to Skype him a week later to let him know that Rambo had to be euthanized. We were devastated. Our other dog, Drover, immediately felt the loss of his best friend and we clung to each other in the months that followed.
By early November, I had developed a stomach ulcer that required a trip to the ER. Luckily I had some time to heal before the next round of treatment but it was an unwanted reminder of all stress I was feeling.
Tim came home!! I immediately started meds for a FET cycle. Yet again, I needed something about this attempt to be different. I had reached out to another Doctor for a second opinion and he offered his insight on what might be going wrong with the transfers and some ideas on how to be more aggressive this time around.
Since the beginning, our clinic had been tracking an endometrioma on my left ovary. It was considered inactive and I was told it would be fine to proceed without removing the cyst. This is something that still brings questions to mind for me but I've trusted my Doctors and left it alone. One worry is that it's extremely close to my bowel and we run the risk of completely losing the ovary or more severe complications.
Taking the advice of our second opinion, we did an endometrial biopsy to see if my uterus wasn't being receptive to the embryos. Testing came back fine but another option was to repeat the biopsy, something called an "endo scratch", prior to starting the cycle. This basically creates a pre-dug hole for the embryo(s) to burrow into. This procedure is somewhat controversial. Some clinics use it to increase pregnancy rates while others are under the impression that it just allows embryos that otherwise wouldn't or shouldn't implant to do so. Reading articles from both sides, I decided to do the "endo scratch".
A week before the FET, my clinic insisted I get a flu shot. I didn't feel comfortable with it at first, being so close to the transfer date, but two of our Doctors insisted it was fine. Later that night, I could hardly move my arm. It wasn't the typical tenderness you get after a vaccine. The nurse had injected the shot into the fluid sac in my shoulder joint! The pain was excruciating but the Doctor insisted it wouldn't effect the outcome so I chose to proceed.
Two embryos were transferred! Both had already hatched which leaves us with one remaining unhatched embryo.
An acupuncturist was able to relieve my shoulder pain at the time of the transfer with needling and cupping. We used the same acupuncturist for our first transfer, but not the second. Since the first one produced an initial pregnancy, I decided it was worth the added expense to try this treatment once again for our third attempt. This is just the tip of the iceberg when it comes to all of the superstitious "tricks" people use to increase their chances. I've read about and tried pretty much all of them; eating avocados, Brazil nuts, high protein diets, pineapple core after a transfer, drinking pomegrante juice, raspberry leaf and nettle leaf tea, giving yourself warm foot baths etc. I'm pretty sure if someone told me that eating rats would produce a baby, I'd do it. I feel that desperate.
Now comes the waiting to find out if either of these stuck around. I'm trying to remain hopeful but to be honest, I don't have much hope left.
As you can tell from our timeline, it's taken a really long time for us to open up and ask for help. At this point though, I couldn't help but feel a sense of relief when Tim's teammate Jon's wife, Colleen, offered to a start fundraising campaign for us. I cannot fully express my gratitude to those who share this and/or are able to donate.
A break down of what we've spent so far:
IVF w/ ICSI #1: $8,352
Oral Surgery: $823
FET #1: $860
IVF w/ ICSI & fresh transfer #2: $9,797
Medication not covered by Tricare: $24
Fet #2: $1,606
Monthly Cryo Storage Fees: $80/month since October 2015
Total to date: $25,872