Hyperemesis & Top 10 Things Not To Say To A HG Woman

**Update 12/5/2012: Unfortunately, I lost my baby last month at the beginning of my second trimester. It is very hard for me to deal with the fact that I went through all of this with no reward in the end. I am keeping this post up, to educate the public on what women go through who suffer with Hyperemesis.**

Hello all. If you've been checking in with me on Facebook, you know where I've been for the past couple of months. If not, well, I thought I should write a post to update you all.

We are expecting baby # 2, and while for most people this begins one of the best times of their life, for me it begins the worst. During my pregnancies, I suffer from a rare condition called Hyperemesis Gravidarum, this disease affects less than 2% of pregnant women.. The definition of this disease: "HG is a debilitating and potentially life-threatening pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and vomiting that prevents adequate intake of food and fluids, with adverse consequences for the newborn."

Now you may be thinking, "Oh, you mean morning sickness."

No. Hyperemesis is more than morning sickness, and cannot even be compared. Besides extreme weight loss, malnutrition, dehydration, and depression, HG can lead to renal failure and death. It can become so unbearable and life threatening, that some women opt to terminate their pregnancy just to end their misery or protect their own health. To elaborate, I will try to explain my experience.

Since we knew about my HG in advance this time around, my doctor prescribed the usual anti-nausea medication for me, hoping early treatment would curb it. It didn't. The unrelenting nausea and constant vomiting began, but since I was still keeping some fluids down, I made myself suffer through it. I did this for 4 weeks, completely bed-ridden and unable to care for my child or even myself.

Anything was a trigger. Light, sound, smells (of course), motion, air moving across my face, even my son's hugs. Do you know how awful it feels to not even be able to tolerate your child putting his arms around you, or kissing you on the cheek?

As usual, it progressed and became worse. I lost an additional 10 pounds in 2 weeks, was vomiting hourly (NOT an exaggeration) and was pretty much just a pathetic lump crying convulsively on the bathroom floor.

Finally, my Dr ordered home health care and a Zofran pump for me to manage my condition, but since it was the weekend I had to wait for my insurance to authorize it. Gotta love insurance companies. When I finally got the go-ahead, I had not kept a single drop of liquid or any food down for 3 days.

My medical supplies were delivered and the home health nurse came out to get me set up. She had me pee on a stick to test my ketones and level of dehydration. When you have no nutrition for a period of time, toxins build up in your system and cause ketosis. Apparently I was off the charts at the highest level you can be.

Go figure.

She hooked up my IV, then showed me how my pump worked and how to change my infusion site.

Yes, I have to stab myself in the abdomen every other day. Actually, my husband does it. I'm too chicken. A nurse calls me every morning to get my ketone levels, log my weight, food intake and check on me.

The Zofran pump holds a syringe of my medicine, which is attached to a catheter that is inserted into my abdomen, this delivers a continuous dose to me throughout the day. I have to alternate the infusion site every couple of days, since the medicine is really irritating to the skin and causes redness and hard lumps.

After several days on the pump things began to get a little better. The vomiting episodes reduced, so instead of 20+ times a day, I was down to 5. I could keep tiny bites of only a few foods down, spread out throughout the day, and a bit of liquid. The nausea never improved, so the doctor upped my dosage and added in a supplemental anti nausea medication.

Here's my set up:

So as you can see, I've not been post-writing-worthy, or food-making-capable for a while. But things are looking up. If you know someone who has suffered from this disease or would like to learn more about it, go to www.helpher.org. It has tons of information and great resources. Not enough is known about HG yet, so more research is being done all the time.

For a bit of comic relief, here are the Top 10 Things Not To Say To A HG Woman. If you've had HG, I know you can relate. :)

10. Being sick is a sign of a healthy pregnancy
9. Don't be such a drama queen, perhaps you should see a psychiatrist
8. Take a shower and then take a walk outside
7. You should feel better by now, it's been 3 months
6. Eat lots of small meals daily
5. Think positive, it's mind over matter
4. Try seabands
3. You should try ginger
2. Eat some crackers

and the #1 thing not to say to an HG woman is...

1. Oh, I was sick too when I was pregnant too!

If you have been guilty of saying one of these phrases to an HG woman, than you need to educate yourself about HG. Education is power and HG women need their family, friends, doctors and nurses to educate themselves about this horrific pregnancy condition. Research has proven HG is not a "mind over matter" issue it is a physiological condition of pregnancy.

So the next time you come across a woman who has Hyperemesis...please don't suggest she eat crackers. She may just punch you in the face - after she pukes all over you of course.. :)



Kate@Diethood said...

OH :(( I am so sorry that you are going through this... I have never heard of HG, but thank you for letting me know about it. Wow... you are in my thoughts and prayers! I hope everything will start getting better and better. Take care of yourself, and please update us whenever you can. (((((HUGS)))))

Unknown said...

Thank you so much Kate.:) I really appreciate your thoughts and prayers, they definitely help keep me going. :)

Leanne said...

I am so sorry to hear about another mama dealing with HG. I had it with my pregnancy, and it's the main reason I'm hesitant to have more children. The constant vomiting, the dry heaving, the throwing up blood because your throat is raw from stomach acid, the delusions that begin from malnutrition and dehydration... I wouldn't wish it on anyone. I hope you find a treatment that staves off the sickness, for at least a few hours at a time. Thinking of you!!

Tara said...

Oh Amber, I am so sorry you are going through this. You are very brave to have a second child when you have such a debilitating disease. I hope with the right medications you can come through this pregnancy more easily. Sending you a prayer that you will be feeling better soon. Tara

Libellula Jewelry™ said...

Years ago, my friend went through the same thing. I'm so sorry that you have to endure it, too but'm thankful that you have proper medical care. The military doctors didn't take her situation seriously enough at first because it was her first pregnancy and she ended up hospitalized.

Unknown said...

You're in my prayers! I, too, suffered from HG (which is why there's an eight-year gap between baby #2 and baby #3). I had heard every single one of your ten comments (especially the cracker one!) Hang in there... the babies are so worth it. :)

Unknown said...

Thank you everyone for your thoughts and kind words. I definitely want to help spread awareness about this condition, because there are even more extreme cases than mine, where women and their babies are dying from lack of proper care.

Stephanie said...

I have heard of this condition before, so sorry you are having to go through it! I pray that the medication will continue to work and that you and the baby make it to the end as healthily as possible.

Catherine said...

Oh no! I am so sorry to hear your pregnancy is so difficult. I had a friend who went to the hospital for severe vomiting in pregnancy but she didn't suffer as long as you. I will keep you in my prayers. I hope that some magical medicinal cure comes through for you. On the other hand, congratulations on the new baby! I hope being so ill doesn't take away all the joy of a new little one coming soon.

Macaroni and Cheesecake said...

I am so sorry you are going through such a hard time!! My best friend actually went through the same thing this summer and also with her first pregnancy. I pray you get some relief soon!!

decocinasytacones said...

I wouldn´t dare tell you one of those things because I haven´t suffered of any of those during my pregnancies....I´m so sorry, it has to be terrible, can´t imagine...at least you have a nice husband who is with you giving you what you need...I hope to hear you´re feeling much better soon...YOU´VE WON HEAVEN ALREADY (Spanish saying)...
Love from the north of Spain

Chung-Ah | Damn Delicious said...

I'm so sorry for what you're going through! I can't imagine how hard it must be. I hope you get better soon! And if anything, I can always send you cookies or something :)

scrambledhenfruit said...

I have never heard of this- I hope you get some relief with your medicine! Take care of yourself and your baby- you're in my prayers. :)

Kim - Liv Life said...

Oh, my, goodness!!! I can't even imagine what you have been going through. Here is probably the 11th thing one should never say to someone with HG... "I didn't have any morning sickness when I was pregnant...". So long as I kept my tummy full I was just fine. Hence the 55 lbs of weight gain though.
You are indeed mom of the year, and I'm SO glad they have found something to help you. Waiting for the insurance to approve it? Geez... what have we come to?
Wishing you all the best and I sure hope things get easier. You will be in my thoughts and prayers.

Jane said...

Amber, you are a heroic mom. Really! To know ahead of time what you will probably go through and to charge ahead anyway . . that is dedication! I admire your perseverance, resilience, and downright courage. And, I think it's a great thing that you decided to do this post. It can only be helpful to other expectant moms in your shoes.

Madeline Grace said...

Oh no! I am glad that you're okay though! Sending positive energy your way!

steph said...

My friend went through this same thing!She couldn't even eat food,she had a pic line through most of her pregnancy!

Laurie {Simply Scratch} said...

Take care of yourself {and the baby!} Amber! Xo

Lisa said...

Ah yes, lovely HG. I also had HG with both my pregnancies. I had the zofran pump and a PICC line for fluids. I was hospitalized several times from fainting and by the last two months was so dizzy that I slept on the floor from fear of falling off my bed. BUT both my girls were born healthy and a week after my 2nd was born I drove my husband to the dr to get the snip :) Best of luck to you. You will survive, even though there are times you may not want to.

Chicago Judy said...

I had no idea this disease even existed and that you were going through it. Please take care of yourself. You'll be in my thoughts and prayers, too. Don't worry about us. We'll be here when you get back on your feet with your beautiful new baby. Keep us posted on your progress please. Take care.

Tamar said...

I never had HG - just very severe morning sickness that lasted all pregnancy till the day of delivery - throwing up only 3-4 times a day, not hourly. If that was horrible - I can't imagine what you are going through. But I remember wanting to kill all the people that looked at me and said - wasn't that supposed to stop by now? You're over the first trimester. So what was I supposed to do, feel sick as well as guilty??

JoLee said...

I know exactly what you are talking about when I had my daughter almost 19 years ago they had no idea what was worng. By the time I was caring my second child I was sent to a specialist because I was considered high risk. My doctor began zofran right away and it helped a bit. I am happy to say I have 2 healthy teenagers and you would never know that I was miserable. Take care and blessing to you.

Anonymous said...

I am so sorry you are going through this and yes, it is an uncommon disease and it is not "just morning sickness". I had it while pregnant and stopped going to work (was so sick I didn't care about getting fired even though I had worked at the company for almost 20 years) and could barely get out of bed to go to the restroom. I went from a hiking and yoga enthusiast to bedridden survival mode. I had to have a spit cup handy for the excessive saliva and I swear I could smell the pipes in the wall and chemicals in the rugs on the floor. I found that if someone cleaned the bathroom lightly with bleach I could stand the smell, i.e. not trigger more vomiting than what I was already doing. When the nurse at my doctor's office looked at me and said I should try eating some nice cheese because I needed protein, I just looked at her dumbfounded. If I could have kept water down, I would have been happy. I later was able to tolerate the Jamba Juice Coldbuster for whatever reason. I don't know what was worse though, the nausea/vomiting or the severe constipation and subsequent stomach and intestinal cramps which the zofran contributed to. My lovely boyfriend at the time accused me of faking the severity of my symptoms because I stopped taking an anti-acid medication for my nighttime torture. It did not help me and it turns out tests later showed it would not have helped me anyway. He was an unsupportive idiot. I sincerely wish you the best and HOPE you have someone supporting you in this extremely difficult time. If it were not for my mom coming over every day and taking care of the things I could not do which was basically everything house related, it got to the point where I just did not care anymore, which was scary. It sounds like you are a trooper though. Sorry for the long post but just so you know you are NOT ALONE during this difficult time. Many good thoughts to you.

Sandie@afoodieaffair.com said...

Amber, really enjoy your blog and subscribe to it. So sorry to hear what you're going through. Here's hoping you will feel better soon, and know that I'm keeping you in my thoughts and prayers during this time.

Amanda @ Once Upon a Recipe said...

That sounds awful Amber. I'm so sorry you're going through that. I hope you start to feel more like yourself soon. xoxo

sarahedsall said...

Congratulations.....and condolences about the condition!
Love your photography, blog and recipes! Glad I stumbled upon your blog!

accordingtocarey.com said...

You poor thing! My sister had a milder version in that, she didn't have to get the pump but if it had gotten much worse she would have. I hope you can find some rest and you will be in my thoughts & prayers.

Anonymous said...

My son was born January 2011 and I also had hyperemesis. It was a nightmare. I totally understand what you are going through. My son is almost 2 and I still haven't forgotten how horrible I felt. I don't know if you are aware but there is a message board for women with this condition. I don't know if I could have made it through my pregnancy without that board. People just don't understand what living with HE is like, these women get it.


Just take it one day at a time. If you ever need anyone to talk to feel free to email me

Anonymous said...

thank you so much for shqring your hg experience with all of us. i am currently going through my second hg pregnancy and started a blog myself. i wanted to share it as a resource and also in solidarity of finding a cure. i am so sorry for your loss but thankful to you for keeping this info up in an effort to help others, like myself. healing and light to you.

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