Wednesday, March 20, 2013

A few thoughts on HG, years later.

A few years ago I wrote this about my experience with Hyperemesis gravidarum, or HG. It's hard to believe that that part of my life happened 6 years ago. It some ways it feels like it was yesterday. Probably because it always stays with you, both emotionally and physically.

Every couple of months I check helpher.org and read the message boards. It's not something I let myself do all the time because it makes life so heavy. I was very excited though, to see the announcement for the HER 5K at the National Harbor on Mother's Day. You see events like this for other diseases all the time, but this one is for HG! Finally! Something to help MY cause! That thing that almost killed ME! I'm already bracing myself for the emotional impact of that day, though. For most of us, it will be the first time any of us will have ever met anyone else who suffered it. It will be a big deal, for all of us.

As the event approaches, I've been reading a lot of HG blog posts. It's hard. It's hard to relate so closely to another person's suffering. It's also hard not to be angry. SO angry. I read stories of PICC lines, Zofran pumps, hospitalizations, and feeding tubes, and wonder, "Where were mine?" At the time I thought I had been taken care of with the best the medical community had to offer at the time. In retrospect, this was clearly not the case. I was given the maximum dose of Zofran and told to go to the ER for IV's occasionally. I was told to hang in there, that it should get better next week. That PICC lines were extreme and that they wanted to "wait and see." I was 93 pounds, hadn't eaten anything of nutritional value in months, was too weak to walk on my own, and sporting that lovely green-ish gray color that comes along with such extended suffering. Wait and see? For what? Death? Because that's really the next logical step on that path. I have no medical training, but it doesn't seem to me like a big leap to see a woman, a pregnant woman no less, in such misery for weeks on end, dehydrated and malnourished, and at least hook her up with a PICC line and start pumping some saline in there. Is it? I realize this is somewhat graphic, but you know how when you have the flu and there's that incredibly intense nausea just before vomiting? That feeling, with that intensity, is what women with HG feel every single moment of every day. It never goes away, despite the fact that you're vomiting somewhere between 10 and 30 times a day. Now imagine that every day of a pregnancy. Saline IV's help tremendously. A PICC line for a woman with severe HG seems like it should be standard practice, but I guess that's just me.

Sigh.

I'm also angry for all of the other women out there who are left to suffer this. Sadly, my story is not unique in the HG community. If anything makes it stand out a little, it's the outcome. Here in the US, we think of women dying during pregnancy or childbirth as a third world problem, but it happens here too. This is absolutely mind-blowing to me. Treatment for HG certainly doesn't cure it, or even make life and pregnancy the joyous time that it should be. But it can save lives and make it a little bit easier to hang on.

My pregnancy with HG truly was the darkest time in my life. I honestly just wanted to die. I begged and pleaded with God to just let me go. End it already. I knew that my friends and family would be upset, but when you're in that state, that's simply not enough. The only thing that kept me hanging on by a thread was knowing that my husband and baby needed me. That was it. If it hadn't been for my husband's unending love and support, I really don't know if I would have made it.

I did, though. My survival meant a better chance for my daughter's survival. Unlike a healthy pregnancy where the risk of miscarriage decreases after the first trimester, the risk of losing the baby continues to rise throughout an HG pregnancy due to severe malnutrition. Yet somehow, we're here. We're both here. I'll never consider it anything less than a miracle that my daughter survived that environment and is this healthy, sweet, smart, beautiful little girl. I don't know how that happened or how I got so lucky.

It took a long time, but overall I'm now the healthiest I've ever been. Or at least the fittest I've ever been. Hyperemesis definitely took its toll on me. My heart, liver, and teeth all sustained damage and will never be the same. They all like to remind me of that occasionally. There is one positive thing that HG has given me though, and that's a sense of perspective. As many of us do, I struggle with self-doubt A LOT. Sometimes I need to remind myself, "I spent every moment of 8 1/2 months of my life staring death in the face.....and ultimately told it to F*CK OFF. What was that again that I thought I couldn't do? That thing over there? Psh. I've got this."




2 comments:

  1. I had never heard of HG before I met you and heard your story. You describe everything, every graphic detail...It is an amazing "story", or "nightmare" and I pray that I never know another woman to have to endure what you did. You have brought light to your cause and I am sure you hug Eva and Aaron a little closer every time you read of another woman with this horrible condition.

    ReplyDelete
  2. Very well written little firecracker

    ReplyDelete