Saturday, May 17, 2008

13DP5DT -- OHSS Woes

Oh my, where to begin?

We cancelled the France trip indefinitely. I find it laughable now that I thought it might be possible.

By late Tuesday and Wednesday, my abdominal pain was so bad that I could barely stand up. Sitting at the computer was just too painful. I was vomiting at night, had episodes of cramping and loose stools during the day, and a gigantic abdomen. I found it increasingly difficult to draw in a breath, and believe me when I say that having your breath at 1/2 capacity for 12 to 24 hours is a horrible feeling. I was unable to stand up straight. It felt like food was stuck in my throat, unable to move into the stomach and beyond. My pulse felt like it was racing all the time. It was actually 88, which is in the normal range, but I'm normally high 50s to 60s, so this was unusual for me.

By Thursday, I went into clinic for my beta (more on this below), determined to demand a "tap". Technically called "paracentesis", this is the procedure in which a needle is inserted into the side of the abdomen, and fluid is drained out into a series of vacuum bottles. Dr W took one look at me (before she even did the ultrasound, I think), and told me that I might feel better if I had it done. Well, no arguing from me. Ultrasound showed that by this point the fluid was way up around my liver. My ovaries are about 7-8 cm.

Dr W arranged for the paracentesis to be done in Intervent.ional Radiology (IR) in the hospital next door (not the hospital I work for...good, I guess...) To give you an idea of how I looked at this point: as I was sitting in the waiting room there with my giant belly, an elderly woman sitting across from me asked me if my baby was kicking!

By the way, paracentesis is easy. Do you think you could stick a needle into a water balloon? Well, if so, you could do a paracentesis. I've I was kinda glad to have it done in IR (ie with ultrasound-guidance), though, just to make sure that they didn't puncture my liver, intestine, or ovaries. The typical paracentesis patient has either cirrhosis, ovarian cancer, colon cancer, etc so some of the nurses there were a bit surprised to see me as their next patient. The PA who actually did it mentioned that he has seen some women with OHSS, although not very often. He told me that one local RE (not mine) tends to leave a drain in place, meaning that the fluid could collect every day in a bag. More on this idea another day.

Since I had the paracentesis done, several people have asked me whether the procedure hurt. Honestly, that question kinda makes me laugh. What's one stick in the belly with lidocaine and a little poking once you have gone through the daily shots and blood draws of IVF? In truth, the paracentesis felt GREAT! After the first 500 mL came out, I could actually draw in my breath and my belly felt at least a little bit looser. In total, they got 2000 mL out (2 big bottles of amber-colored fluid). I have to give credit to the IR staff. They really tried to reposition me (roll to the side, Trendelenberg position (head down), etc), moved the catheter a bit, etc, to get every last drop possible out. However, in the end, 2000 mL was all that they could get. When I stood up, things were much better, but there was clearly a lot of fluid still left inside.

Enough about OHSS, what about the pregnancy... how's that going??

To back up a bit, once our trip was definitively cancelled, I changed my beta-HCG to Thursday (11DP5DT) to coincide with this clinic's "recommended" test day. They told me that they were looking for a number between 100 and 200. So, I was in the zone, but the beta was "only" 119, and that kinda freaks me out because it's below the median number listed on the betabase and below what several of you have gotten. If you are at least 100 at 11DP5DT, this RE does not "recheck" the beta to see whether it is doubling.

Also, I still have basically no other pregnancy symptoms (breasts feel pretty much normal). I'm trying to stay cautiously optimistic, but I'm not getting my hopes up very much. I always thought that my worries would be over once I got a positive HPT, but then I focused on the beta, and now I'm focusing on the heartbeat, and I'm sure that after that I'll start focusing on the nuchal translucency and then maybe the anatomy scan, and then maybe 24 weeks (viability), then 30, then 34...until I have a baby safe in my arms.

Anyway, the fluid is definitely building up again. I'm probably back to late Monday/early Tuesday of last week in terms of symptoms, so hopefully I can make it 'til this Monday before I have another paracentesis. I'm sure I'm going to need it and IR is closed on the weekends, so hopefully I won't have to suffer too much in the meantime. Worst case scenario, I could go to an ER, but I'd really rather not.

In the meantime, last night the most disturbing symptom yet appeared. TMI ALERT!! My labia (majora and minora on the right side) are now really really swollen. I mean, I know that men get gigantic swollen scrotums when they have ascites, but I had almost forgotten that women can get an analagous process with their labia. Thank God for the internet so that I know that this is not unexpected with OHSS. Basically, the fluid in my abdomen is going with gravity. Since there are small connections between one's abdominal cavity and one's labia (or scrotum), the fluid can just follow gravity and head South. It is difficult to elevate one's labia above the level of the heart, so I suspect that I will be having this symptom for a long while. I just hope that it doesn't stretch anything permanently, ya know?? I told S about it, but told him that he'd probably rather not see it. He is generally not at all squeamish, but he agreed to pass on that one. These deformed labia and my ugly giant stomach (it doesn't look pregnant when uncovered, it just looks stretched out and ugly) with no hint of a waistline have made me feel pretty low right now.

Sorry for another whiny post. I know it sounds like I am not grateful to be pregnant... and in truth, I am grateful, but I'm just fearful that it won't last and that all this misery will be for nothing. I just have to keep telling myself: if the end result is a baby, though, it will all be worth it... Ultrasound is Tuesday, May 27th (6w0d).


Amy Jensen said...

Wow - I don't even know what to say about that ... it sounds horrible! I'm glad they were able to do something to help (if only temporary).

Congrats on the beta - it's still a good number!!!

Cindy Nguyen said...

oh my, this sounds just crazy!!! I've been checking back for updates.

From what I know about betas, its the doubling time that matters not the actual number (I know you know this already)

BTW, doesn't "beta" mean change, oh no maybe thats "delta". duh!

Rooting for you and the little one all the way. May 27th seems sooo far away.

Emily said...

Oh honey! I have been wondering how you were - sounds like you have been livin it up over there. YIKES!!! I am so sorry - you must be miserable. Please feel better soon! Any idea when OHSS will start to subside? Beta sounds great - congrats again!

Pink-CJ said...

OMG girl, I am so sorry. I was worried about you because you hadn't posted in awhile. I assumed you were getting better. Mine went down thank GOD, but I Feel for you! I am so sorry about your France Trip and your beta number is fine. As long as it doubles like cindy said. Everyone's body is different. It will result in a baby and I am the same way, worry about heartbeat, 12 weeks and so on. My friend did tell me once your baby is born and its in your arms, you then start worrying about other things, so as a parent the worrying never stops and I finally believe them! Get some rest and I will be thinking and praying that your OHSS will go down super fast! Yea Sono at May 27th! It will come fast! said...

You poor thing.

I hope this OHSS is sorted out as quickly as possible for you.

Congrats on the beta.

poppy.f.seed said...

OHSS has been our biggest worry with the whole IVF process. It sucks you have to go through it, but I am so glad you got the drainage done!

I hope the wait for the u/s isn't awful.

Jill said...

I was wondering how you were doing! So sorry to hear about the OHSS ordeal. That sucks. Hopefully, you'll feel much better after the paracentesis. And, your beta sounds fine. Look forward to hearing your u/s update on 5/27.

Kayleen said...

I am going through all of this OHSS right now. I am freaking out as this is not something I have ever experienced in the 5 years of fertility treatments. We found out that we were pregnant and then two days later I am in the hospital with OHSS. I am worried that this will affect our pregnancy outcome. Are you still pregnant and are things still good?