Our Journey to IVF
It should have been so easy. That's what I always think as I prepare to tell anyone this story. For something so natural and seemingly so straightforward, we sure have had a lot of trouble. Some might say we should read the writing on the wall and give up, but we both have a strong feeling we are meant to have a biological child, one way or another... so we keep trying, and we pray.
Our fertility journey starts pretty much with when we met. I was 32 and Sean was 37, and we both knew we wanted children, so we thought, why waste time? We were talking about marriage within a month or two, and got engaged four months after meeting (and I felt like he made me wait soooooo long). After a year of dating long-distance, I moved halfway across the country to join him, and we got married less than six months later (having known each other roughly a year and a half, in case you're keeping track).
As soon as we both agreed that we wanted to spend our lives together, we started trying for a baby. If there were repercussions to getting pregnant before the wedding—judgment from our families, possibly having to choose a different wedding dress—we figured we would just deal with it. There were more important things in the world.
But it didn't happen. And then for a year after our wedding, it also didn't happen. Cue the endless series of tests... Well, it felt endless to me, and I have friends who've gone through much more extensive testing than I have. Our doctors felt that there were many more tests they could do to try to pinpoint what was causing our fertility problems, but regardless of what they found, the treatment options would probably be the same.
Because my mother had a condition called endometriosis, the doctors felt there was a strong chance I had it too. It can't be diagnosed without going in laparoscopically and performing a visual inspection of the pelvic cavity; there is no test or scan that will detect it. My heavy and painful periods were another indicator I probably had it, so we scheduled my procedure for Aug. 15, 2014, understanding that it could be a minor diagnostic test (if no endometriosis was found), or a long, involved surgery that would take several hours (if a severe case of endometriosis was found).
Endometriosis is a condition in which cells like those found in the uterine lining (the endometrium) grow elsewhere in the body. Because they typically grow nearby in the pelvic cavity (inside the peritoneal lining, on the bowels, on the diaphragm, etc.), the theory for a long time was that the uterine lining somehow "spilled" out into the surrounding cavity (although this doesn't really seem possible, since it would have to come out through the fallopian tubes). However, more recently, I believe research has established that the wayward endometrial cells are found in these unusual locations from the beginning of life. In other words, they're just cells that grow in the wrong place, or grow into the wrong type of cell for where they're located.
Just like the cells of the uterine lining, the wayward endometrial cells respond to monthly hormonal shifts in the body, growing to support a baby and then shedding... except that there's nowhere for them to go. Instead of getting flushed out of the body along with your period, they stay where they are and become scar tissue. This scar tissue can interfere with the ability to become pregnant. The wayward endometrial cells can also generate their own hormones, upsetting the balance in the body and making it even more difficult to become pregnant.
When my doctor went in to have a look around, she found what she said was the most severe case of endometriosis she'd seen in 25 years of performing this surgery. So, it was a very involved procedure that took several hours of cutting out lesions, taking extreme care to get it all so as to minimize the chance of it growing back. Still, it would have been a quick recovery (just a few days).
At the end of the surgery, I suddenly began bleeding abnormally (too rapidly and not clotting as would be expected) after clotting normally throughout the rest of the procedure. The exact reason is unknown. An allergic reaction is suspected, so I am never to come in contact again with the substances that were applied at the end of that surgery. But dietary factors may also have played a part, or it may just have been a fluke. We will probably never know for certain.
Whatever the cause, this bleed had lasting implications for me. My kidneys evidently lost their blood supply briefly, even though the doctors gave me several units of blood as soon as they noticed the reaction I was having. Kidneys can be damaged by having their blood supply cut off for even a short time, and this was exactly what happened to me. I had a three-week inpatient hospital stay (five days in the ICU, a week in the critical care unit, and just over a week in general care). As I slowly recovered from how sick I'd been—my liver function came back online, I could breathe on my own, I learned to walk again after losing all my strength, I could eat and drink—my kidney function was still at zero. I required dialysis treatments (being hooked up to a machine that cleans your blood) every day or every other day.
At the time I went home from the hospital, I still hadn't peed on my own. The doctors wanted to keep me longer, but I was getting around pretty well and was desperate to sleep in my own bed and make food without ordering it from the hospital kitchen and waiting an hour or two for it to arrive. They let me out on a Friday afternoon, knowing that if they didn't discharge me then I'd have to stay until Monday. They suspected that since they'd only recently taken my catheter out, my kidneys hadn't "woken up" yet. You can imagine how relieved I was to pee for the first time in almost four weeks, on my second or third day at home.
I mention this just to paint a picture of how sick I was. Right after my surgery, nothing in body was working, and it took time for different things to return bit by bit. I had an enormous incision (which they'd hastily cut to open me up to try to find the source of the bleeding, before determining it was coming from everywhere), so at first I had a "wound vac" to help the wound heal faster, and a corresponding hose extending from my abdomen to a suction unit and battery pack. (You could almost mistake it for a purse if you didn't look too close and notice the hose.)
Dialysis hadn't been so bad when I was in the hospital because I had nothing else to do and no energy to do anything anyway, but as I started to feel better, it became a major drag: five hours at a time of sitting still in a chair, three days a week. Even with a special memory foam cushion I borrowed from my mother-in-law, my tailbone would start to ache after hours in the chair, but I couldn't move too much or the machine would malfunction. Some days I couldn't even turn a page in my book or swallow a sip of my drink without the machine alarming, so I'd just have to sit completely still and do nothing. Dialysis also left me nauseated and lethargic. There was no way I could return to work and still do this three times a week.
Just before Thanksgiving, I was finally liberated from dialysis. My kidneys had slowly been regaining some of their function. First, the extra water weight came off, indicating that my kidneys were doing better at regulating the liquid balance in my body. Then, I was taken off the renal diet, meaning my kidneys were doing better at regulating minerals such as magnesium, potassium, and sodium—so I no longer had to live in fear of my heart stopping if I ate the wrong thing and my electrolytes got out of balance. Freed from the renal diet, I ate everything in sight. I had lost about 30 pounds when I was sick, and then when coming off of the painkillers (and after having a nasogastric tube for two weeks), I had a lot of trouble with nausea and keeping food down. So once I could eat again (and eat what I wanted), I couldn't get enough food. While I tried to make healthy choices, I would literally eat all day long, and I definitely enjoyed some treats during this time. It was fascinating to watch my albumin (a blood protein whose level indicates how well nourished you are) rise each week with my blood work!
Once I went back to work in early December, my weight was rebounding and I was finally feeling like it was realistic to start thinking again about getting pregnant. Our doctors gave us a green light to start trying. At first we were hopeful that the situation would be different with my endometriosis gone, but in six months when I still wasn't pregnant, we decided to try letrozole (to stimulate the ovaries) and Ovidrel (to trigger ovulation). This combination of drugs is often used as an intermediate step to give nature an assist before trying IVF, since the cost is so much less. We also considered intrauterine insemination (IUI). However, we never got that far.
We had gotten all the pieces in place—we had our supply of drugs, we were going to be in town when we needed to be for the doctor visits—and my main fertility doc suggested I see a perinatal specialist just to see what concerns she might have about the childbirth process for me, given my history of abnormal bleeding and my enormous scar (by this time I had also developed a hernia and abdominal separation).
I really viewed this appointment as a formality or a way to find out what precautions to take for the birth. No way did I expect the specialist to tell me we shouldn't pursue pregnancy—but that is exactly what happened. Based on her review of the research on kidney disease patients, she felt my level of function (about 40% of normal) placed me in a group of elevated risk.
When a woman is pregnant, her blood volume doubles. The body is amazing, and even in women with moderate kidney disease like mine, their kidneys rally to clean the blood and support the baby—but it's as if they burn themselves out. The specialist told me in all likelihood the baby would be fine—but there's a good chance my kidney function would permanently decline after the birth, and I'd end up back on dialysis.
When we talk about age-related infertility, it's a woman's eggs that are the limiting factor. If you have good eggs or embryos frozen from when you were younger (or from a donor), pregnancy is possible at remarkably late ages, as we've seen in several news headlines recently. So to give my kidneys more time to heal, we decided to go ahead with IVF, hoping to freeze embryos and buy ourselves some time. Of course, it's been almost two years since my surgery, so my kidneys may not gain back any more function—and in that case, we'll have some difficult decisions to make—but one thing at a time.
When you prepare to start IVF, there's a whole other round of testing that has to take place. So, we slowly worked our way through that (with me having to go back to the lab a total of three times because things were forgotten or entered wrong). We had to attend and IVF training class and order our drugs from a pharmacy in New Jersey. (if it initially seemed like a hassle to work with this pharmacy instead of just going to Target like we usually would, I am so glad we ended up working with them. They are a family-owned pharmacy that specializes in fertility drugs. They provide super-fast and reliable service with a personal touch, and everyone on their staff understands what the drugs do and has been trained in the emotional as well as the clinical side of infertility. Check them out: Mandell's)
Then, it turned out our travel schedule was getting in the way—for IVF you need to be in town for a period of two to three weeks for near-daily doctor visits, and it's best to have some cushion on either end of that, for reasons I'll get to in a minute! So, just when we had gotten everything squared away with the pharmacy, we had to call and put the order on hold because some of the drugs have a short window of efficacy, and we didn't want them to expire before we could use them! So we had to start everything over the following month... which was when I noticed one of the items we needed had been left off of our order... so my doctor had to call in a prescription for that item... and then I had to call the pharmacy back again to authorize payment... and then I had to go to a FedEx center to pick up the package (which was in a cold pack and had to be taken home and refrigerated immediately) because they wouldn't deliver it to my home without someone there to sign for delivery, and they couldn't specify a time window for delivery.
I think you're starting to get the picture—nothing, absolutely NOTHING about this process is easy or straightforward. Today was supposed to be the day we started IVF, but when I went for my baseline visit, they noticed a cyst on my left ovary during the ultrasound. It's not something that's bene there before, so they think it is an egg left over from my last cycle—nothing to worry about, but they would like it to be gone before I begin treatment. So, we can't start our injections for another week. I'm due at the doctor again early Saturday morning for another ultrasound, and I'll have to take birth control pills this week to keep my body from spontaneously producing follicles on its own. The fertility drugs need to be administered from the beginning of the cycle, so we're essentially delaying the start of the cycle by a week.
With this process, nothing is guaranteed. It's not guaranteed that we'll have a baby at the end. It's not even guaranteed that we'll get a single viable embryo out of this. But we feel we have to try, and so hopefully in my next post I'll have better news that we were actually able to start treatment! It's about time.