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

My last post ended with me explaining what OHSS is, and me being hospitalized for it. Now, let me describe to you how the hospital stay went and all it entailed. Will probably break this into two parts, since SO much happened.

We arrived at the hospital (Monday, 10/7/13). I had no idea how we even got there, because I had been reclined in the car, holding onto my stomach with my eyes closed. I do remember saying to Brad, very matter-of-factly, "They are NOT putting in a catheter. I don't give a f#@% what they want." Brad wisely did not engage me in conversation.

Brad grabbed a wheelchair and rolled me in. I was taken aback by one thing...

There was nobody in this hospital. There was one front desk person and one person doing intakes. I saw no other patients. No visitors. Nobody walking the halls. Quite bizarre.

It took us 10-15 minutes to do the intake paperwork, and they started to roll me back to my room. At this point, I was thinking, "I better not be sharing a room. That would be torture." and still hovering on, "If they tell me I need a catheter, we're leaving."

Luckily, they rolled me into a HUGE room with only one bed. Ahhh. And even better, there was a bucket collector in the toilet, indicating they expected me to urinate like a normal person. Good. Nobody would have to feel my wrath.

The rooms actually had a spare bedroom, with two cots for visitors to stay, one couch, and several cushy chairs. Not bad.

A nurse immediately came in to weigh me (at this point, I was up about 12 lbs from my normal weight) and give me some lovely hospital gowns. I waddled myself to the bed. Getting in and out of this thing was soon going to be my nemesis. Everyone that saw it (including the nurses) always thought it went lower. But no. No it didn't. The bloated girl was going to have to hop up onto it and slide into it for the next 8 days.

So, then the fun stuff began. They immediately wanted to take some blood samples and put me on an IV. "Ugh. At least it's not a catheter." First problem, because all the fluid was hanging out in my abdomen instead of my blood, they couldn't find a vein in my arm. The IV ended up having to be put in my hand (and they weren't sure that was going to last), and someone finally found a vein in my left arm after an hour or so of trying.

They then handed me the room service menu (it was probably 2pm at this point, and I hadn't consumed anything all day). I quickly asked, "Do you know if there are many vegan options?" Because as I browsed the menu, there were only food titles.. with no description whatsoever. The nurses stared blankly back at me. One eventually muttered, "Well, when you call, they should know. And if they don't, ask for their supervisor."

Looking further at the menu, I was amazed again at the garbage that hospitals feed to the sick. Cheeseburgers, pizza, fries, soda.. I mean, really? I get the occasional junk food. But should it be what a hospital serves directly to your room? Eh.

I spotted about ten items that might be vegan. The first meal I ordered vegetable soup, pickles, and a salad. The tricky part was the dressing. They had a lot of creamy dressings -- ranch, thousand island, etc. But not one vinaigrette? They did have an italian dressing listed, so I ordered that.

Got my meal, and the soup was horrid. I don't know how a vegetable soup (they confirmed was vegan) ends up with an oily film on top.. but it did. And sure enough, that italian dressing had cheese in it. And did the kitchen just have olive oil and vinegar? Nope. So Brad actually had to go buy me a bottle of salad dressing for the nurses to keep in a little fridge. I'm glad he did, since the rest of my stay, I lived entirely off fruit for breakfast, then vegetable broth, salads, and crackers for lunch and dinner.

In fact, it was always quite amusing. Whenever I would call to order, the person taking the order was always so confused. "Is that ALL you're going to eat?" "Oh sweetie. I feel like I'm starving you if that's all I send." "Are you sure you don't want any REAL food?"

If "real food" is oily soup and everything sent to me in plastic and foil packets.. I'll pass ;)

The one saving grace was that they had soy milk. So I could still enjoy some before bed (a typical ritual at home).

Everything went fairly smoothly the first night. The doc had stopped in to check on me, and advised me, "It's going to get a lot worse before it gets better. But if you can make it to the weekend without needing a drain, you might turn the corner without one."

Lovely.

The next day, they started monitoring my urine output hard core. And what freaked me out most was that my urine looked like vegetable soup. No. Really. Dark orange, thick, with specks in it. Seriously. It was so disgusting and bothersome at the same time. The nurse assured me that it always looked like that in OHSS patients.

Every two hours, they'd come in and take vitals. My pulse and blood pressure remained extremely high (compared to my norms). Every morning at 4:30am, they'd come and wake me up to draw blood and to weigh me. Oh, and starting the first day, they also began giving me blood thinner injections each morning.. right into my stomach. She warned me that it was going to burn as the medicine dispersed. Fun, and ironic, considering it was done exactly the same way as the Follistim. Each night, I was putting on several pounds of fluid. And every morning, they were unable to find veins. Getting different nurses, doctors, and anesthesiologists to give it a try. Usually, after an hour or so, they'd get enough blood and leave me alone.

After the second day, I needed a shower. Bless my husband for what he was about to have to see and do. I was truly just starting to look like a blob with limbs. My legs looked like tree trunks (no definition, even around my knees). I had to sit on a shower chair, covering my IV input from the water, as he washed my hair. And the moment he sat down on the shower floor, water spraying into his face, so he could shave my legs.. I fell in love with him all over again. All kidding aside, I had NEVER been so vulnerable, nor felt so unconditionally loved.

A couple mornings later (Thursday), I had peaked. I put on 8 lbs in ONE night. They also couldn't find ANY veins, not even in my feet. And let me just say, having someone poke needle after needle into your feet and ankles is extremely painful.

They decided at that point that I needed a PICC line (a catheter in your arm that goes towards the heart, making it easy access for IVs and blood draws).

Cut to me freaking the F#@% out. Not to the nurses of course. Just hyperventilating all by myself in the solitude of my room. It was only 6am and I was texting Brad. He asked, "Do you need me to take the day off and come down there?" I replied, "I don't know. I'm just freaking out and scared." He, as a wise husband, knew that meant, "Yes, idiot. Get your ass down here." ;)

He arrived about a half hour before the "PICC team." This pair of ladies were set on being a comedic duo. I was in no mood for such things. They were sanitizing the room, making it look like an operating room, while telling me, "It's no big deal, really." Then, as they're about to begin, the older of the two ladies tries to show me my own veins on the ultrasound screen. Then presses down and shows me my vein closing and opening. "See, it's winking at you."

Eh. Barf.

They finish, and while it was nice to be able to remove the cumbersome IV from my hand, the idea of this catheter hanging out near my heart never ceased to weird me out and make me feel like I had constant chest pains.

As the day went on, my feet and legs started swelling BIG time. It started hurting to walk. And when it reached dinner time, I got out of bed to eat, like I had at every meal.. and it was even hard to breathe. I knew this was not good.

I called the nurse.. and I couldn't even believe the words were coming out of my mouth.. "I think I need the drain." I felt so defeated. But you know, if it means being able to breathe, I just had to accept it. The fluid was literally running out of places to go.

So, in the next installment, I'll describe the lovely drain procedure :) Stay tuned.

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.

We're Back... (And My HSG)

After a long, and much needed, break.. we're back at it.

Since the standard pills (Clomid and Femara) didn't do anything for us, injections (Follistim) are next.

Before my doc would start injections though, he required that I do an HSG (Hysterosalpingogram). If you're not familiar with this procedure, be grateful. They basically inject some dye, through your cervix, into your uterus and fallopian tubes. They then take an x-ray, looking to see if there are any blockages or deformed areas.

Let me describe how it went.

My hubby was kind enough to take the day off of work, so he could drive me the hour to the doc's office.

We go in and register. It only took about 5 minutes before a technician called my name. She walked me back to this tiny dressing room. On the bench inside was a box of generic pantyliners, and some hospital socks. She handed me two gowns; one to put on normally (open in the back), and the other to put on as a robe. She said, "You can leave your shirt on, but nothing below the waist. And when you're done, just come out here." She pointed to her right, to a small corner in the hallway, that was surrounded by a curtain.

Um. Okay.

I proceeded to strip down and put on my sexy booties. As I headed out to the hall, to see what was behind the curtain, I found 2 other women in the same get-up.

Awkward....

It's not very often you can sit in a waiting room, and know with absolute certainty that none of the women are wearing panties.
For our privacy, I assume, they secluded all of us non-ovulators into this tiny corner and hid us away from the world.

They also kindly provided us with a little information sheet about how the procedure is done. It went great lengths (and ALL CAPS) to explain that many women feel lightheaded afterwards, and that if you do, there's a chain to pull in the dressing room if you need help.

Hmm. Interesting.

So, the technician comes in and tells us the order in which we'll be called. I'm last.

The first woman goes in. I hear them call for her husband to join her. Ironically, he's also named Brad. I chuckled to myself at the idea of her calling "Bradley!," and my husband coming back to see a different woman spread out on the table.

A few moments later, I hear the patient let out a few grunts. Within minutes, the technician runs out to a pantry in the hall, grabbing cans of juice. She quickly murmurs to us, "She just passed out. This might take a little while."

We then hear her talking to the doctor. "Yeah. She passed out. Right on the table. Nope. She didn't even get up first."

Uhhhhhh.

Eventually, the first woman walks back to her dressing room, with her husband supporting her on one side. He then has to go in to help her get dressed.

Next!

The second woman goes back. Her spouse/partner was apparently not present, or opted to not come back. As a bonus for being last, they let hubby come back to my little seclusion corner and sit with me.

So, I'm sitting there, telling my husband how the first lady actually passed out, when we hear screaming. Not just one scream. Not a grunt. But full on, "Someone shot me in the leg!" kind of screaming.

The second patient was clearly having a rough go of it. "It HURTS! It huuuuurts! Stop! Can you stop? Get it OUT!"

THAT is when I got a little shit-my-pants terrified anxious.

I turn to my husband. "SEE what I have to do?!"

I then joke, "Well, she'll be an epidural candidate."

It was my way of reminding myself that if I really wanted to go through labor, this can't scare me by comparison.

Patient #2 emerges, gives me a quick smile with a concerned look on her face, as if apologizing; knowing that her screams of terror have likely given me even more fear.

My turn! No doubt, my stomach was churning and I was tensing up. Bad news bears.

I go into the room, which is very dark, and VERY cold. Granted, they made me remove the 'robe' gown.. so my ass was out for everyone. I knew that between the blue hospital gown and brown hospital booties, my husband was beyond excited. But he'd have to wait. Doctor is going in first.

So, I lay down on this metal table. The technician instructs me, "Just relax. Here are some handles to squeeze when it gets painful. Oh, and it's best if you let your legs just drop to the side... kind of go "froggy."

Sure lady. I'll relax while gripping something in pain. Seems legit.

Doc comes in. Puts on all his protective garb (I get none).

Well, hello cold speculum. It's been awhile.

I can feel everything, but I can't see anything. I just have to stare at the ceiling, hoping this goes quickly.

Unfortunately, the doc is giving me a play-by-play. "Okay, now you're going to feel a pinching... Now, some pressure. Okay, in about 5 seconds, it's going to hurt."

Why tell me that? As soon as you say that, every sphincter in my body tightens up more than a nun at an orgy.

And there it was. The worst internal pain I'd ever had. But I'm a silent sufferer and always have been. No grunt, no yell, no cry. Just breathe.

And just as you're about to breathe through it, the technician yells, "Hold your breath!"

I can't say it was horrific, or that I even wanted to scream. It felt like someone poured some acid into my uterus, and the "pain" really comes from not being able to move or do anything to make it stop. You just have to lay there and take it.

The good news is that it only lasts 15-20 seconds before it dulls down into some cramping.

The doctor leans over, rubbing my arm. "You did great. And Carol, you have a PERFECTLY shaped uterus."

Thank goodness. My husband can now brag to all his buddies about his wife's perfect uterus.

Additionally, my tubes are clear and ready for egg and sperm travel. So, game on. Next month, we'll be starting injections. We'll definitely keep you posted.

Just Shut Up

No, not you.. but "Just shut up." was a mantra of mine a few days ago.

You see, my job involves seeing and/or drug testing many criminals that are on home detention. And often (and unfortunately for me and society as a whole), it often involves seeing them interact (usually horribly) with their children; as well as encountering many pregnant women.

As you might imagine, it really gets under my skin. Day in and day out, I watch these women; who typically are mothers several times over. Many no longer have custody of their children.. but just keep on getting pregnant. Some even actively use drugs while pregnant. And they ALL seem to ask me if I have children.

But the worst ones, are the ones that are so excited to be pregnant. They talk about it non-stop from the moment they walk in, til the moment they leave my office.

And that happened this week.

She walks in, filling out her paperwork.

"Well, I'm pregnant! Isn't that exciting? I tell you, God just knows when you're ready. I'm so excited. Such a blessing. God just knows."

The infertile atheist was already annoyed. But she keeps going, as I try to just smile and nod.

"After using meth for almost ten years, I didn't think I could get pregnant.. But God knew I was ready. God can do anything."

*sigh*

Yep, of course.. God wants the unwed meth head, on home detention, earning minimum wage.. to have a baby. But clearly thinks it's a bad idea for my husband and I; with no criminal record, gainful employment, and a viable plan for the future.

Now, I know not all my readers are atheist, so I'll refrain from posting the many vile things I was actually thinking about she could do with her kind and giving "God." Suffice it to say, I was annoyed.. pissed even. But this kind of thing makes my job nearly impossible for me to get through some days.

And it's precisely the reason that I get so annoyed when people say things like, "Everything happens for a reason."

Because it doesn't.

Some shitty people have kids. Some abusive people have kids. And some people that would be wonderful parents, don't get to. It's not a divine plan. It's a crap shoot.

The Fundraiser

So.. We've finally decided to ask for help.

Sort of.

I decided to set up an online fundraiser. Our 'goal' is $15,000.. which is enough for around 5 months of injections, or one round of invitro. Yes, quite unlikely that we'd raise that much.. unless I have relatives with money I don't know about. ;)

But even if we could get a few thousand, that would pay for a month of injections. In other words, anything helps.

And I started thinking about how I have over 500 Facebook friends. My husband has several hundred. If every person donated $5, we'd be well on our way.

The reasoning for doing it now, is pretty simple. We're asking that family, friends, and coworkers consider making a donation instead of sending us a greeting card, buying me a drink on my birthday, or giving us a Starbucks giftcard for Christmas. We just don't need any of that stuff.. and the possible gift of conceiving is far more important.

We also recognize that this is a hard time for a lot of folks. We're in no way demanding or expecting people to donate. We just wanted people to know that this is our priority. If you want to give us anything, for any reason, this is our preference right now.

If you want to donate, just follow this link: Our Little Wish

You can donate any amount. Even just $1. And surely, there are 15,000 people in this world that would give us a dollar if they knew our story.

So, whether you donate or not.. PLEASE share this with others. Post a link on Facebook, Twitter, your blog, etc. The more people we reach, the better.

Thank you!

Break Time

Well, this past Wednesday, hubby and I met with the fertility specialist; to reassess, and figure out what comes next.

Before even walking in the door, we knew we couldn't really afford to do anything right now. I'm fine with taking out a small loan in the future, if we have to... but it just doesn't make sense to do it right now. Not when we're hoping to buy a house in the next 6-9 months, and taking out a loan could keep us from getting a mortgage.

Sure, my heart wants to just plunge forward and deal with it later.. but the reality is, that could leave me with no house to call our own, and no children if the treatments don't work. We both agreed that it made sense to secure a house first.

So, as we walked in, the doc basically reiterated that, "Well, doesn't seem that Femara works very well for you. So... this is where it starts getting expensive."

I had an idea of what that meant, but wanted to just clarify. "So, for the injections, how much does each cycle run?"

First, he replied as if slightly offended that I asked that way. "I don't like saying 'each cycle' because that implies that it'll go on and on.'"

Well... sorry doc. But it has already. One year of metformin. Three cycles of metformin and clomid. Three cycles of metformin and femara. Excuse me for planning ahead, and not assuming that the first time is going to work. Eh. And even if it DOES work, there's only a 20% chance of actually conceiving. So, on average.. that's 5 cycles.

Hopefully, it doesn't take 5 cycles.. because as suspected, his response to cost was, "about $3,000. Your medication for one cycle is $1500, and the ultrasounds and bloodwork will be about $1500."

So, if you do the math.. that's $15,000 for 5 cycles...... *breathe*

Yes, we could try invitro, for the bargain price of $13,000.. but that still might not work.. and it's all at once. On top of the fact that it's a full-on procedure (injections are scary enough), it just doesn't sound like something I want to do at this point; maybe not ever.

The doc reassured me that on the injections, there's around a 95% chance that you'll ovulate. So, it's just a matter of getting that sucker fertilized and growing.

He then also added, "But this is where your chance for multiples really comes into play. Your chance for twins is about 20%, with a 5% chance of triplets or higher."

Yes! Here comes my own reality show. :P

I explained to the doctor that we're going to need to put off anything further, for financial reasons. And I immediately asked, "Is there any concern about us putting this off for a six months to a year?"

He replied, "Oh no. You're still young. I'm not concerned about that."

Whew! Someone still thinks I'm young.

So, that's what we're doing. Waiting. In the meantime, they want to do an x-ray of fallopian tubes. They inject a dye to see if they're blocked at all. He doesn't suspect there's a problem, but with the costs of the procedures going forward, he doesn't want to waste all that money and time, if the tube does happen to be blocked.

And he only described the procedure as 'unpleasant.'

Well, color me excited.

Dearest Bradley

Yes, this is sappy.. so if you're not up for that, just stop reading now ;) I don't tend to post uber-mushy stuff to my husband on here. (I actually tried to post it on Facebook, but FB was having all kinds of issues.) But every once in awhile, it feels right to give him a public 'thumbs up.' So, here goes.

Dearest Bradley,

There are times in my day, when I just stop and think, "I am SO lucky." Not just lucky to be married to you, but lucky to have you as a friend, a support system, and my comic relief.

You have amazed me in your ability to adapt. To grow with me, instead of separate from me. Always supportive of my dreams, my whims, and my sometimes drastic changes.

You've managed to not skip a step as I went vegetarian, quit a job without a backup plan, shaved my head, started a business, jumped out of a plane, went vegan, gone through the ups and downs of fertility meds, financial hardships, and even tossing around the idea of moving several states away (if not Canada).

I can't say you never questioned me, but you've mastered the ability to question me, without doubting me or pushing against me.

I'm not sure there's another man out there that would have gotten through all that, let alone while remaining completely supportive and on-board for all of it.. and you somehow managed to be closer to me at the end of it, than when we started.

We just keep getting better. And I love the fact that our story, though now several years in, is still just getting started. But even if the worst should happen, I know today.. that I have been completely loved. Inside and out. Good and bad. You have made me feel loved. Perfectly and totally loved. For that, I thank you, more than you'll ever truly know. And I can only hope that I've made you feel the same.

So, to the man who will drive all over town to find my chai tea, will go to every appointment with me so I don't have to feel alone, and accepts that 'tickle wars' are only one way battles; and that tickling me back is off limits.. Thank you.

Thank you for all those things. And for all the challenges that we've yet to face, because I know you'll still be there, unwaivering. Thank you for always being in my corner.

I still choose you. <3