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.

Hey (Special) Doc

So, after a fun weekend of celebrating our one year anniversary, I was off to the reproductive endocrinologist..

First, props to my husband for taking time off of work to go with me.. though he only ended up answering one question for the doctor; which was, "Do you have any other kids?" (after I had stated I hadn't had any). Luckily, his answer was "no." If it had been "I don't think so." our appointment would have gone very differently. ;-)

Anywho, as soon as I walk into the waiting room, I see a few couples (one of whom was clearly knocked up), and a couple women sitting alone. Half of one of the couples happens to be a teller for the bank I go to for work; at least a few times a week. Ugh. What are the odds? Then later, I find out that one of the men went to school with my hubby. Definitely a small world.

About 40 minutes after we arrive, I get called. We walk back into a very nondescript office. Two barren desks, and a bookshelf with literally nothing on it. No books. No knick-knacks. Clearly, this is the floating office for visiting doctors.

The Doc comes in and shakes my hand. Takes a few moments asking all the usual questions: How long have you been trying? How old are you? What have you tried?

I tell him that my current OB/GYN had me try Clomid at the lowest dose, but was concerned about putting me on higher doseages due to possibly overstimulating the ovaries. Well, this doc clearly did not have that same concern.. as he immediately prescribed that I try the maximum doseage (3 times what I was on). He informs me, "Oh, and with this doseage, you may have some hot flashes and mood swings." Bad news, Doc. I had those side effects on the lowest doseage. So, this should be fun. (my poor husband)

Doc proceeds to inform me that "we do Clomid a little different here." Oh? Do tell. For that, he sends in his nurse, with packets of information. She tells me how we'll induce the cycle (like normal), then I'll take Clomid (like normal), but then instead of a blood test, I'll come in earlier for an ultrasound of my ovaries. Hmm.. Okay. And then, if it looks like I have a follicle ready, then it's injection time.

Ummmm.. what?

Yeah, injections. Fantastic. What's worse? It's the DIY of injections. The kind of injection they expect your husband to give you.. fresh out of the refridgerator, where you store it by the butter. Bleeeeeeeeh. Not sure I'm up for that part. I'm clearly going to have mixed feelings when it's time for the ultrasound.. hoping I have a follicle.. but wishing I didn't need any injections.

Then, lastly, they say.. "Oh. Let's go ahead and do some bloodwork while you're here." Hooray! Always my favorite thing. But I'll give it to them this time. The dear asian lady that took my blood didn't try to engage me in useless chit chat; which never distracts me. It just annoys me. She just did her thing, and I literally didn't feel it. Trust me, I always feel it. So, high-five, asian lady!

That was my 'consult' today. And on a good note, they believe insurance will cover the consult and possibly part of the ultrasound, since it's considered part of "diagnosis" and not treatment. So, here's hoping that the meds are the only thing completely out of pocket.. for the moment.