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.

Third Time's A..

So, I just got home from my ovarian ultrasound.. This was my third round on Femara/Letrozole. As you might recall, it worked the first cycle (I got a mature follicle), but didn't work the second time.

Given the 50/50 outcome, I wasn't sure what to expect on the third try.

So I took my meds, did my yoga.. everything the same as both times before.

On Tuesday afternoon, I got a call from the doc's office, saying that no ultrasound tech was going to be in Lafayette on Friday, so I'd have to come to Indianapolis at 8am to get it done.

Freaking fantastic.

I was immediately annoyed. Now I had to drive an hour out of my way, in rush hour traffic, to probably get news of absolutely nothing.

Luckily, my wonderful husband decided he'd go into work late, so that he could drive me.

So we got up at the crack of dawn to head towards Indy.. to an office in which I'd never been.

Upon our arrival, we made our way to the second floor of the medical building. Looking for the correct suite number.

Found it.

Paused.

This was a tiiiiiiiiny waiting room, filled with anxious women.

Literally, there were only 6 chairs, and the room was half the size of our bedroom. I immediately chuckled to myself as I thought, "This is going to be fun to write about later."

I walked into this tiny space, lit only by two very dim table lamps. There was a clipboard sitting next to a clock... just outside the receptionist's window. Nobody said hello. In fact, nobody said one word the entire time I was in there.

So, I signed in on the clipboard. Moments later, a mysterious hand reaches out from behind the sliding plastic window, pulls my name from the top, sets the clipboard back down.. then slides the window shut again.

No hello. No smile. The receptionist literally made no eye contact with anyone in that room.

This was the most bizarre waiting room I'd ever been in.

All the women huddled in the darkness, away from the silent/avoiding receptionist. The awkwardness was palpable.

No radio. No television.

Each woman pretending not to know why everyone else was there. Some nervously typing, with an annoying clicking, on their blackberry phones. Others, browsing Us Weekly. None of us making any eye contact with each other.

I sat there, wondering what phase these women were in. Which medications? How much had they spent?

And do I want to keep doing this?

This life of waiting rooms, debt, tension, sadness.. It never looked appealing. But this made it look dreadful.

I know some women will literally do "whatever it takes." I don't think I'm one of those women. I've never felt like I "needed" to be a mother. I just felt like I'd be a good one.

Just not sure how much I'm willing to spend.. in physical, emotional, and financial costs.. in order to prove myself right.

Finally, they called my name from behind the door. That's right, they didn't even walk out into the waiting room to greet you.

Two seconds later, I'm in an even smaller room, with the all-familiar stirrups. And the room was almost completely pitch black. Just the glow of one dim lamp reflecting off the assortment of medical instruments.

"Just get undressed from the waist down, and I'll be right back." said the big black woman who walked me here. Apparently, she was the ultrasound tech.

This routine, I knew well. Let the scanning begin!

Left ovary. Lots of follicles.. none large enough.

Right ovary. Lots of follicles.. none large enough.

Well, that was a waste of a trip.. and $200.

So, she instructs me to return to the waiting room, because I'll be meeting with a nurse.

Ah, maybe to discuss meds? Talk about costs of more intensive options? Who knows. So I wait.

"Carol." I hear from behind the door again. I open it to walk down the hall, and there's a nurse.. shoving an invoice in my face.

"Well, everything looks okay. Just hand this to Miss So-and-so and she'll get you taken care of."

Ugh. What?

Miss So-and-so was standing all of 6 inches from us.. so I turned and handed it to her. She stated the total, took and swiped my credit card. I guess that's all Miss So-and-so needed from me.. that the nurse couldn't directly hand to her. :/

And here's the WORST part.

As I'm paying my $220 ultrasound bill, the overly highlighted nurse says, "So, everything looks good here. So, go ahead and take your injection tonight."

I look at her probably with a mix of 'puzzled' and 'disgusted' across my face.

She looks confused, "You're on the booster shot, right?"

I sternly reply, "I didn't think any of the follicles were big enough... so..."

She looks down at the chart, scanning it up and down.. like a pre-schooler pretending to read. "Ummmm. Yeah. You're.. uh.. right. Sorry." Followed by silence as I'm signing my receipt.

Finally, as I go to grab my copy of the receipt and walk out, the half-comatose nurse murmurs to me, "Yeah, so.. we'll call you. We'll have to ask him about that."

Sure thing lady.

The whole experience at this office was so weird. From unprofessional, to strange, and right back to unprofessional. Luckily, I wasn't really on edge or emotional, or I probably would have burst into tears when I corrected the idiot nurse who's telling me to go ahead with the injections because everything looks "okay."

So, then the long drive home.

I wasn't really sad.. just left feeling like.. now what? Do we try the next step (injectables), or do we just admit that this isn't working, and accept a life without children?

It's hard enough answering that question for myself.. Let alone agreeing on a plan of action with another person who is equally involved in the matter... My husband.

About halfway home, I turned the radio off and asked, "So, what's next?"

He didn't know any more than I did.

We talked about the costs. Injectables cost $3000-5000 every cycle. A far cry from the $300-400 we're spending now.

But, they're much more likely to work.

So, we had to discuss regrets. Would we regret when we're 50, that we didn't spend $9000 to try to have kids? Was it worth risking?

Is it even feasible? We're doing 'okay' right now.. but I have some dental work coming up. Can we afford that much debt? Is it worth getting a second job?

The only things we could agree on were these:

1) If we spent $9000, and I got pregnant, we wouldn't regret spending the money.
2) If we spend the $9000, and I didn't get pregnant, we weren't sure if we'd regret trying or not.. but probably not. Because then we'd at least be able to say we gave it the good college try.
3) It's hard to rationalize spending $15000 on a one-day wedding, but not $9000 on a possible child.
4) We could cut straight to adoption, IF we decide that's an option for us, but you're still looking at $15000-20000 in costs there anyway.

Conclusion:

For now, we're going to wait a few months. First, I want to be sure it's worth the risk (financially and physically). Then, I feel like we should be squared away with a house before risking large sums of money on fertility. And I don't want to take out a loan for treatments, that could impact our ability to even get a mortgage.

But on a truly honest level, the more I'm going through this.. the less it feels like a "need." I think after you get married, it seems like it's the normal next step. And while the possibility of that not happening is a difficult thing to face; sometimes torturous when you imagine yourself at 60 with no children or grandchildren.. it's something I'm coming to grips with.

And the only reason I know that I'm coming to (or returning to) a place of being okay without children.. is that half the time, I'm thinking about all the money we would save, the extra free time, the places we could go, and things we could do.. without children in tow.

I think of all the ways I could use my maternal instincts; animal sanctuaries, adopting more dogs, etc.

But there's still that other 'half of the time' .. when I imagine what our child would be like. Brad's eyes, my nose, and hopefully my math and science nerdiness.. And I REALLY want to meet that person.

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.