Follistim, OHSS, and a Long Hospital Stay (Part One)

My last post was all about the preparation leading up to our first cycle of injections (Follistim). And let me tell you, a LOT has happened. This will be a two parter. This post will talk about what led up to the hospital admission. The next one will talk about my hospital visit and all that entailed.

I apologize upfront for all the medical speak, but I'm posting this not just for friends, but for other couples who might find themselves in this situation.. curious about what is actually happening. So, let me start from the beginning.

On 9/17, I took my first Follistim injection. And by "took," I mean cringed, laughed, cried, and shook around while my husband attempted to do it. Once injections began, I had to get blood drawn and an ultrasound done every other day -- to check the status of the follicles my ovaries were growing, and to check my blood estrogen levels.

I was on a fairly low dose (125 units), and responding well. After just 6 days on 125 units, my follicles were near 13mm. So they dropped me to 75 units for the next 2 days. Went in for another ultrasound, and I was ready. I had a total of around 20 follicles bigger than 10mm, with 3 above 16mm (considered mature, likely to contain a viable egg).

Of course, a normal woman only produces one egg a month. As you might imagine, having 20 follicles makes your ovaries a little enlarged and a bit tender. Nothing I wasn't expecting.

So everything looked great. They told me to go ahead and trigger (which makes you ovulate roughly 36 hours later). We triggered on Wednesday night (9/25) as instructed.. and two days later.. something was wrong.

I was at work when my stomach started hurting pretty bad. At first, it felt like terrible gas or constipation brewing. So when I got home, I started doing yoga in hopes of relief.

It did not work.

Then, over the next few hours, my stomach started to swell a bit. So, at midnight on a Friday night, I called my specialist. He wasn't very concerned. "Oh, you probably just have some tenderness from ovulating. If it gets worse, let me know."

Well, by Sunday (9/29), I looked 6 months pregnant (see picture). And it still hurt. So, I called again. He asked me to come to his office on Monday morning.

Monday morning, I waddle into his office. He gives me the once over, and is still not concerned. He says, "You might have a mild case of ovarian hyperstimulation. You should just take it easy this week. Drink lots of fluids, preferably things like Gatorade."

So I walk my growing butt out, and proceed onto bed rest for the week. I drink lots of Gatorade, Vitamin Water, and eat anything salty (even drinking some pickle juice). The salty food is supposed to pull some of the fluid out of your abdomen and back into your blood stream.

Problem is, each day, I'm getting bigger and bigger. I was putting on 7 pounds roughly every two days. On Saturday (10/5) it started getting hard to breathe when I was sitting up. There was so much pressure in my abdomen, my lungs/diaphragm couldn't expand all the way. Another emergency call was made to my specialist. This time, he instructed us to the go to the emergency room.

Off we went.. knowing it would be a disaster. The local hospital had no idea what was going on. They were checking for a whole list of diseases that causes abdominal bloating.. even though I explained to every doctor and nurse that it was ovarian hyperstimulation. They drew blood, did x-rays, and concluded that I just needed to take a diuretic to clear out all the fluid.

Luckily, the ER doc called my specialist to confirm. My specialist basically told them that no way should I be put on a diuretic. The reality was, doing so would pull even more fluid from my blood.. not my abdomen, and it would have made me worse.

So, they didn't do anything for me, and sent me home.. with instructions to follow up with my doctor. Thanks :/

Late Sunday, I started getting lightheaded. I nearly passed out when I was alone, just trying to walk to the bathroom. I proceeded to get worse throughout the night. I was struggling to breathe, my blood pressure was rising, and everything felt wrong. Seriously wrong.

Brad called the doc first thing Monday morning, and we immediately drove down to Indy. Brad had to get a wheelchair to take me into the building, because I could no longer walk.

We enter the waiting room. At this point, I look like a very sick woman, 8 months pregnant, sitting in the fertility clinic. The other women weren't sure what to make of me.

I started feeling really nauseated and light headed. Told Brad to get a nurse. I needed to lay down ASAP.

They took me back, and as soon as I laid back, I started bawling my eyes out. I'm not the crying type, but between the pain, pressure all over my body, sleep deprivation, and just being overwhelmed.. the flood gates opened. By the time the doc came in, I was just trying to breathe normally.

He took one look at me, "We're going to admit you to the hospital. The hyperstimulation has definitely gotten worse."

You think?

I was less than thrilled to be stuck in Indy indefinitely, but eager to get some sort of relief.

So, you might be wondering at this point.. "What IS ovarian hyperstimulation (OHSS)? How does that even happen?"

Well, when you go through fertility treatments, especially with injections, you tend to make more follicles. As I said, I had nearly 20 fairly decent sized ones. When you take your trigger shot, all those follicles release. In some women, those pockets then start to fill with fluid. A chemical/hormonal reaction then happens around the ovaries. The ovaries start pulling fluid from anything nearby, including your blood vessels. Essentially, your blood vessels start leaking water.. making your blood dehydrated; and dumping liter after liter of fluid into the spaces around your organs. Roughly 20-30% of women get mild to moderate cases that just require a little bed rest. Only 1% of patient require hospitalization.

Guess who got to be part of the 1 percent?! Lucky me.

In the next blog, I'll describe my hospital stay and recovery. Stay tuned.

Wedding Cake and Hot Flashes

My last post was fairly brief, and only said that the cost of one of my meds had gone down and that I had another ovarian ultrasound coming soon. Well, that ultrasound was today... but before I get to that, let me set up this cycle a bit.

This time around, I wasn't stressing at all. In fact, there were a couple times I almost forgot to take my meds; it was so far in the back of my mind. I also almost forgot what day my ultrasound was on. Being less 'aware' and focused on the calendar, made this cycle a little easier to get through in general.

This past weekend, my husband and I were at a wedding. A couple there, that we're friends with, had also been going through issues with infertility. The wife blurted out that she was now almost 3 months pregnant. She thought I had already been told, but I hadn't. So, I was surprised.. sure. Upset? No. In fact, the only thing that bothered me was that when I congratulated her, I could see the pity on her face.. but it was different from the usual. This was someone who could empathize with how it felt to be trying and failing to get pregnant. She was afraid to look happy in front of me, because she didn't want to rub it in my face. I reassured her that it was okay, and that I was sincerely happy for them.

And, I was telling the truth. I didn't feel even the slightest wave of jealousy.. but as I started contemplating the whole weekend. First, finding out our once 'infertile' friends were pregnant, the next day being Mother's Day, followed by my ultrasound.. it felt like there was a rock sitting in my gut. I wasn't mad, nervous, or jealous. Just uncomfortable.

I was aware that I hadn't felt any sharp pains, like I had with the first cycle on these meds.. so I was betting they hadn't worked. That's my pessimistic nature, anyway.

This morning (CD10), as I was leaving to go to my appointment, my husband said, "Hope we get good news."

Ugh. Why did he have to say that? At that point, in my bones, I knew this cycle hadn't worked.

So, I arrive to my appointment; first patient in the waiting room. After about ten minutes, the tech arrives; and calls me back. Just like last time, I go into the side bathroom, and wrap what literally is a large paper towel around my waist.. and head for the table. Briefly, I wonder if I should wear my socks. I had just painted my nails purple for the wedding and they still looked cute.

I decided the tech would probably not be impressed by shiny toenails. Socks stayed on. LOL

So I scoot down and she does the standard exam. Uterine lining. Good. Right ovary.. a few follicles, nothing large enough.

She then asks if I'm on injections. I answer, "No. Just letrozole."

Left ovary.. a few more follicles.. nothing large enough.

The tech said nothing, but I knew from last time the size they were looking for.. and none of these qualified. As we're finishing, the tech says, "Everything looks good."

Good? Compared to what, exactly? The largest follicle was 10mm, and they need to be around 18mm.

I get dressed and walk out, where she's getting ready to fax my results. She then asks (again) if I'm on injections. I tell her no, just the trigger shot. She doesn't even look at me, and says, "Oh. So you already took your fertility meds.. So these should be...." She just abruptly stops talking, but never looks up. So I say, "Yeah. None big enough."

So, unfortunately, I was right. The meds did nothing this time. No idea why they worked the first month, and not this one. That was a whole lot of hot flashes for nothing :/

A nurse from the doc's office called me a couple hours later, telling me what I already knew.. That none of the follicles were large enough to warrant the trigger shot, and that we can try one more round of this medication, or try something else.

What nobody really wants to grasp is that there is nothing else for us. We can NOT afford the next options. I don't have an extra grand sitting around every month.. just to "try." I don't know many people who do.

That is the part that is actually most exhausting. Not the planning, or marking the calendar, or scheduling the medications... but coping with the idea that "You can't afford to conceive a child." That is a really hard pill to swallow. That I don't have enough money to overcome a defect of mine.

And it's something that is even harder to say out loud. I'm dreading the meeting with my doctor when I have to tell him, "The next steps just aren't possible for us. This has to work, or we're not having children."

It literally feels like someone who's got two quarters left to their name and they're standing in front of a slot machine. Knowing that if they don't strike it big on the next two tries.. they won't even be able to get home.

So, I spent the day on the verge of tears.. but didn't actually cry until my husband got home and asked me how I was doing. I think what makes me fall apart isn't the 'bad news' .. it's feeling like a disappointment to him.. no matter how much he reassures me that's not the case.

Trigger Shot and Symptom Spotting

So, at the end of the last post, I stated that I had to take a trigger shot that evening. It's an injection of Ovidrel, that's supposed to force ovulation. This, by far, was the worst part of everything I've been through so far.

I stood in the mirror at my bathroom sink, repeatedly watching the how-to video on my Nook tablet. Did I get all the air out? Do I put it in at an angle or perpendicular? Is this two inches from belly button? Am I supposed to put it in the same side as my dominant follicle, or does it matter? And, oh yeah, there's a needle!

I kept telling myself to do it quickly, like ripping off a bandaid.. but I just could.not.do.it. My fingers went numb. I kid you not, it took at least a full 90 seconds from when the needle started going into my skin, before it was actually all the way in. Then at least another two minutes to actually push in the plunger.

By the time I was done, I was leaning against the sink, feeling like I was going to vomit. As soon as I took out the needle, I collapsed onto the bed.. drenched in a cold sweat. Like I told you, the worst experience to date.

As instructed, we "got busy" for the next three evenings, and I was instructed to take a pregnancy test on the morning of March 3rd.

In the meantime, I had all sorts of symptoms. Cravings, food aversions, extreme bloating, tender breasts, nausea, etc. Problem is, like anyone TTC will tell you, is that the meds that make you ovulate, actually give you pregnancy symptoms. So, you can never trust any of them.

One thing I hated about this cycle though, was not knowing if I even ovulated. You take the injection to 'cause' it.. but you never really know if it worked.

Anyway, like most women, I was guilty of taking a couple tests early.. both negative.

So I waited for March 3rd. By then, all the symptoms had pretty much stopped, so I was pretty sure of the results I would see. BFN (Big Fat Negative).

And just to add insult to injury, within 3 hours of taking the pregnancy test, my period started. Thank you, mother nature, for flippin' me the finger. Appreciate it.

Obviously, I'm disappointed. I took a few minutes to cry.. and then moved on. Because I know statistically, that even if everything works perfectly, it'll probably take a few attempts. Like I said though, we don't even know if I actually ovulated.

But, due to financial costs (for Femara and injection, it's around $700/month; that we just don't logistically have laying around), I'm planning on taking this month off. And since my cycle started already, I wouldn't be able to get the meds in time anyway. So, we probably won't try again until April. Though, I am NOT looking forward to doing that injection again.

It's just hard, knowing that time is ticking away. Some people will say age doesn't matter much anymore. Sure, it's easier for older women to get pregnant with all the technologies. But the expense is also higher as you climb the technology ladder, and the risks to the baby are far higher the older you get. It's definitely something that weighs on me.

Glimmer of Hope

So, I had another ovarian ultrasound this morning (cycle day 12). I went into this one a little bit more hopeful, as I felt like I could tell the drugs were working.

I was on Femara this cycle, and last night, I was getting very sharp pains from the area around my right ovary. It also felt swollen when I would massage that area.

And sure enough, the ultrasound showed a 20mm follicle in my right ovary. A good sign, for sure. They look for follicles that are 18-20mm, and I've never even gotten close before. My left ovary, on the other hand, had a few tiny ones; but none that were viable to mature. But, they tell me it's normal for one ovary to dominate each cycle.

So, I drove home with a little sense of hope; immediately texting my husband to share the news, and then stopped at Starbucks for my own personal celebration of a smoothie and blueberry scone (but let's not dwell on that). I know it's still a long shot. But at least I know we can check one thing off the list of hurdles we need to overcome. Who knew that cancer medications and fertility yoga could actually get my ovaries to do something they're supposed to do?

I've been instructed to take my trigger shot tonight. This is super scary to me. I don't particularly like injections (who does?), and I really don't like the idea of giving myself one in the stomach. *shivers*

We won't really know if this cycle worked until early to mid March. So stay tuned.