Hyperememsis Gravidarum Awareness Day 2016

I haven’t written much about Hyperemesis Gravidarum in a while. It’s hard for me to write about. It’s hard for me to remember. But I realized recently that even harder than remembering it is living through it, and right now there are women all over the world suffering from HG. So today I’m breaking my silence on HG and doing my part to spread the word about this disease.

For those who don’t know, Hyperemesis Gravidarum is a life threatening form of nausea and vomiting in pregnancy. Some folks might say that it’s like morning sickness, and I guess it is, if morning sickness lasted all day every day for months on end and caused you to vomit so much that it endangered your life. It’s awful. It’s ugly and brutal, and it kills mothers and babies. That’s why it’s important that we talk about it.

I’m a two-time survivor of HG, and you can read about my experience under the Hyperemesis Gravidarum category.

If you’re suffering from HG, you can check out my hyperemesis gravidarum protocol here. It might be useful to print this off to share with your doctor if you’re sick or to make notes for yourself on if you’re planning another pregnancy.

Recently, there’s been some buzz in the news about Zofran and the possibility that it has been linked to birth defects. One of the things I’m happiest to share is this study from UCLA that found no evidence that Zofran causes birth defects. This is huge! Zofran has saved the lives of many women with HG, and maintaining access to life-saving treatments is so important. I’ll share a post later with more about my experience with Zofran, but I thought it was important enough to get this life-saving news out as soon as possible. I didn’t want to wait to tell you all.

HG is terrible, but there are ways you can help.

You can participate in research studies. If you or a relative has had HG, you can check here to see if you qualify for the research UCLA is conducting to find out if there are genetic links with HG sufferers.

Click here to learn more about the study.

You can sign this petition asking lawmakers to support more study on HG.

More than anything, you can talk about HG. So many mothers suffer in silence. I spent 12 weeks of my first pregnancy covering up how sick I was because I felt guilty for being a wimp about morning sickness. I’d never heard of HG, and learning that I had it and that it was real probably saved my life. Even many doctors don’t recognize HG as being real, so talking about this and spreading the word can save lives.

If you know someone who has HG, reach out to her. This disease is so isolating. Understand that she may not be up to hanging out, but knowing that you’re thinking of her can really help. So can helping with more mundane things like dishes, laundry, babysitting kids so she can rest, and meals for the family.

She may need help getting to the doctor’s office or the pharmacy. Let her know that resources like HelpHer.org are out there. Keep an eye on her and if it seems like the treatment isn’t working, help advocate for her with medical professionals. I remember going into my 2nd round of HG prepared and ready to fight, but when I was in the thick of it, I just didn’t have it in me to correct the random doctors in the hospital who told me there was nothing wrong with me. Even the fiercest woman may need help standing up for herself when she is so desperately ill.

If you have Hyperemesis Gravidarum know that you are not alone.

I see you. I know your struggle. I remember. I stand with you. Please reach out to friends, family, HelpHer, facebook groups, and wherever you can find support. You are not suffering from this because you are weak. You are so, so strong even though it feels like you’re breaking apart at the seams. More than anything, you are not alone.

HG Awareness Day

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Post Hyperemesis Gravidarum Pregnancy Wrap-Up

I am about a month out of my hyperemesis gravidarum pregnancy now, which is hard to get my head around. I’ve got lots of questions swimming around in my mind.

Did that really just happen? Was it as bad as I remember?

I think the mind shrouds experiences like that in a kind of fog.  I know it happened.  I can go back here on my blog and read about it.  But it just seems so far away and unreal.  Maybe it’s the mind’s way of protecting itself.

Could I have done anything differently?  Did I do anything wrong?

I did so much research going into this.  I have to feel confident that I did the best I could and got really aggressive treatment.  Even with all of that, it was bad.

Really bad.

I still remember that Friday night with the nurses holding me down and trying to get a needle in me and the auditory hallucinations making me think my daughter was there crying for me.  I remember the ER doctor telling me that they were going to put a PICC in and start me on TPN and then 24 hours later another doctor telling me there was nothing wrong.  The night nurse taking my blood pressure so hard that all my needle sticks from earlier in the night started bleeding again.  I remember fighting for a PICC and having the hospital doctors blow me off.  Those three days haunt me.  What if I’d fought harder?  What if my regular doctor had been in town?  What if I’d left the county hospital and headed up the road to the private hospital?  Would my care have been better?  Would they have given me what I needed right then instead of putting it off until it was almost too late?

Did I really survive that?

I remember my mom walking in the door after flying all day and turning right around and taking me back in to the ER because my IV line clotted off.  I remember sitting in triage so scared of the IV stick that I was shaking.  I remember looking as hard as I could at a buckle on my mom’s shoe so that I wouldn’t have to see the needle that Trauma Nurse Andy was getting ready to put in.  I remember my mom hiking up and down the stairs to my bedroom bringing frozen cranberry juice and rehydrating me drop by drop.

And then it stopped.

And I felt guilty.

And then it came back a little.  And I felt guilty.  Because for so many women the 3rd trimester relapse is really bad, and mine was controllable with a doze of Zofran in the morning and a Nexium at night.  It wasn’t that bad, but I still hated every second of it.

And then, suddenly, it was over.  And I had a baby in my arms.

Am I normal again?

I think so.  I still eat smaller meals.  I think my stomach shrank.  I can take prenatal vitamins, which is kind of exciting.  I don’t have to take 12 different pills on schedule throughout the day anymore.  I can enjoy my food.  Even foods that I liked when I was pregnant taste better now that the hyperemesis gravidarum is gone.

And more than anything, I’m happy.

Was it worth it?

Absolutely.  Both of my daughters are miracles.  They are amazing people.  I can’t even express how worth going through HG they are.

Would I do it again?

Absolutely not.  After Cricket was born, while I was waiting for contractions to begin again so I could deliver the placenta, I was already asking my midwives to recommend someone to tie my tubes.

As much as I might want a 3rd child, there is no way I can survive HG a third time.  The disease has made the decision for me.  That’s kind of sucky.

Here are some raw numbers for you:

  • Starting weight: 139 lbs
  • Lowest weight: 127 lbs
  • Final weight: 185 lbs
  • Total weight lost: 12 lbs
  • Overall weight gain: 46 lbs
  • Max Zofran dose: 39 mg/day (that’s above the usual max dose of 32 mg that the manufacturer recommends)
  • Worst day: Friday, February 18th
  • Day I got my PICC: Tuesday, February 22nd
  • Day my PICC failed: Thursday February 24th
  • Day I turned the corner: Tuesday, March 15th
I think the bottom line is, I survived.  If anyone can get any use out of my HG experiences, it will make blogging about it worthwhile.  In the meantime, though, and for now, I need to not talk about the HG.  I need to leave it in the past.  There are other things I want to write about, and right now the HG just isn’t one of them.  I’ll leave up my protocol and the HG-related links, but for now, I just really need to take a break from that and write about other things.

My 3rd Trimester Hyperemesis Gravidarum Cocktail

I’m not quite into the 3rd trimester yet, but the hyperemesis gravidarum has been creeping around the edges of my life.  I’ve had to start taking meds again, which is not particularly fun.

I had been waiting to take the Zofran until I really needed it.  I’ve learned that I have a hard time reading my body’s feelings since the HG.  I don’t always recognize mild nausea for what it is.  This means that I frequently wait to take the Zofran until it’s too late and I’ve already thrown up.  There’s nothing like having to scrub down the bathroom in a fast food place.  Yuck.

I decided, this past weekend, that I needed to take a more proactive approach.  I called my midwives, who put me in contact with the back-up OB.  He was kind enough to write me a script for 100 8mg ODT Zofran tablets.  Thank you merciful heaven for good insurance!

I’ve started taking them regularly again.  Not much, but every single day.  I’ve also added Nexium in since I was having trouble with acid reflux.

Of course, with the Zofran comes the joys of the Zofran side effects.  So I started drinking this stuff called Natural Calm, which is a Magnesium/Calcium supplement.

Natural Calm is a powder that you mix into water.  It fizzes up and becomes a lemon-flavored drink.  According to the back-up OB for my midwives, the magnesium helps stop muscle cramps in your legs, a real issue for many pregnant women.  The other benefit is that the magnesium helps you poop.  So bonus all around.

I had heard about this product during my last pregnancy.  One of my mom’s friends recommended I give this a try during my pregnancy with the Grasshopper, but at the time I was concerned about shelling out money for the big jar of the powder only to find out it wouldn’t stay down.

Thankfully, my local natural food store held a health fair this past Earth Day, and there was a table set up with a Natural Calm rep and free samples.  She let me have a taste of it and sent me home with a handful of free samples in a variety of flavors to see which one sat best on my sensitive stomach.

At the time, she warned me to be careful with it.  The magnesium can cause loose stool in some people until your body adjusts to it.  “Trust me,” I said, pointing to my Zofran pump, “That’s not going to be a problem for me!”

I finally reached the point a few weeks ago where I could drink this, so I ended up getting a jar of it.  I got the Natural Calm Plus Calcium formula in Raspberry-Lemon flavor, and so far it seems to be helping.

So at this point, I drink the Natural Calm in the afternoon, and take a Nexium pill and an 8mg Zofran tablet before bed.  The idea is that the nighttime Zofran will carry over into the next morning.

So far, it seems to be making a big difference. I felt sad about having to restart medications, but the positive change in my overall feeling of health tells me that it was the right move.

I’ll be 27 weeks tomorrow.  One more week until I officially reach the 3rd trimester.  I just need to keep taking things one day at a time.

Say goodbye to your leetle friend!

I have officially said goodbye to a certain little something that has been a part of me for the last few months.

If you guessed my left pinkie, you’d be wrong.  Besides, I’ve had that my whole life.

If you guessed my Zofran pump, you’d be dead on the money!

That’s right!  I am officially off the Zofran pump.  Completely unplugged and it’s in a box, on it’s way back to the home health company as we speak.

I had intended to wean down to zero on the pump.  This was something my home health company doesn’t do, but I got the go-ahead from my doctor to just try it anyway after I complained that Alere wasn’t wanting to humor me and wean me how I wanted.  Actually, what she said was, “Now, I’m not going to tell you to adjust the pump on your own, but you know how to do it by now, right?”  Yep.  I sure did.  And that’s just what I planned to do.

My goal was to be down to nothing by April 27th.  I think I’ve mentioned before that the constipation side effect is worse for me on the oral meds.  If I could avoid that, I definitely wanted to.

Friday, my Alere nurse told me I could unplug any time.  I told her I intended to wean down to a lower dose before unplugging.  I was still getting the equivalent of 20 mg per day.  That’s 2.5 oral doses.  That’s a lot.  She reminded me not to mess with the pump myself.  I rolled my eyes.  She was on the phone, alright?  She didn’t see me roll my eyes at her!

Sunday, something in me snapped.  I just could not bring myself to put in a new infusion site.  It wasn’t about the pain of the little needle.  It wasn’t about the pain of the horrible welts I’ve been getting all over my legs from the zofran irritating the tissue.  I was just sick and tired of being tied down.

I was sick of standing up and having the pump fall off the floor.  I was sick of having the pump bag get tangled in my purse straps.  I was sick of the thing beeping at me for no apparent reason.  I was sick of having to lay in bed waiting for the lidocaine to kick in so I could stick myself.  I was sick of everything about the stupid thing.

So I didn’t plug in.  I just… decided not to.

And things went well.  Really well.

It was a nervous 72 hours.  I figured if nothing happened in 72 hours, I would be home-free.

72 hours passed uneventfully.

This past Friday, I talked to Alere and agreed to send the pump back.  I boxed it and FedEx picked it up yesterday morning.

I am officially and completely free of the thing.  And I’m not taking any Zofran at all.

I’m at the point where I’m still taking the oral Meclazine and Nexium, but my doctor has given me the go ahead to start reducing those as well.

I’ve also been able to add some other stuff in to my diet: adult vitamins and probiotics.  Have I mentioned what a huge fan of New Chapter I am?  They’re pricey, but totally worth it in my opinion.

It’s been a thrilling week.  I still get tired pretty easily, and by the end of the day, I am completely cashed out, but I am not throwing up anymore!  What a huge victory!

Weaning from the Pump

Well, folks, it’s official.  I am weaning from the zofran pump!

Assuming all goes well, I’m hoping to be off it in time for The Big Ultrasound, scheduled for May 4th.

This by no means indicates that I am “normal”.  I don’t even know what normal really means anymore.  But it does mean that I’ve stabilized and reached the point where comfort can mean taking my ODTs as needed.

It also means no more needle sticks, no more beeping in the night when I lay on it, no more forgetting the syringes in the fridge and having to make my husband hike down and get them, no more hauling around my friend, no more people asking “What’s that thing?”, and no more tubes getting tangled in wiggly toddler feet.  No more vicious, hot, swelling and itching knots on my thighs.  No more having to test my ketones.  No more obsessing about weight.

In short: Freedom.

I can practically taste it.  And it tastes so, so good.

Monday they reduced my dose from 0.820 ml/hour (39ish mg/day) to 0.750 ml/hour (36ish mg/day).  It went great.  I had a rough patch Tuesday evening, but I had skipped my afternoon snack, so it was attributable to lack of food.  Because of this rough patch, I decided to hold steady on Wednesday.  Then today, since everything has gone well, we reduced my rate to 0.660 ml/hour.  I don’t know what that is per day, and I don’t want to do the math.  I don’t want to obsess over it and get hit with psychosomatic symptoms.

We are keeping all of the rest of my medications the same.  We want no outside variables clouding whether or not the zofran rate reduction is working.

So far, so good!  Cross your fingers things continue this way!

By the way, we did meet with the midwives yesterday, but I’ll have to update about that later.

Hyperemesis Gravidarum catch-up: Hospitals, PICC lines, IVs, and other fun

Doctor

A lot has happened in my world of hyperemesis gravidarum.  I’ll try to break it down into a timeline.

Friday Feb 18th – I had a really, really bad day.  This was after they had set me up with the zofran pump and home IV hydration the night before.  By the afternoon I was in terrible shape and my Alere home health nurse instructed me to go in to the hospital immediately.  I did and initially they sent my up to labor and delivery.  The nurses there tried to get an IV in me because my one from before had blown but they couldn’t do it.  They kept sticking me again and again.  I started halucinating I think.  I kept thinking I could hear the Grasshopper crying but I couldn’t get up to help her.  There were a lot of nurses in there.  A couple of them were holding me down I think and trying to talk to me because I kept panicking.  The regular nurses tried to get the IV in.  The NICU nurse tried.  Finally they got an anesthesiologist in and he got a line in and they started running fluids.  Then they sent me back to the ER.  I was there until midnight I think. They gave me a bunch of stuff. Lots of shots. Then they moved me to the sick ward.

My night nurse was so mean. She would come take my vitals and put the blood pressure cuff so tight that it made me cry. She kept saying my bp was low and doing it again and again. It was so tight that the old iv sticks started bleeding. She also tried to check my BP on my left arm where the IV was which is a huge no-no.  My doctor helped me figure out who she was and gave me her name.  I will be writing a letter.

I was there through the weekend.  Saturday they gave me potassium in my IV which really burned.  Then more fluids.

Sunday Feb 20th –  I was doing better and eating crackers, so they sent me home.  They were kind enough to get a new line in so I could go home and hook up to my IVs at home.  Unfortunately, that line clotted off before I could get the fluids going.  My mom arrived right around that time, so she dropped her suitcases off at the front door, hopped in the car, and drove me back to the ER while my husband went to go pick up the Grasshopper from daycare.

I was really scared when they came to put the new line in.  I had been stuck so many times on Friday that it just terrified me.  I just looked at a rivet on my mom’s shoe and tried to breathe.  I was so scared I was shaking.  But the nurse who came to do it was phenomenal.  Trauma Nurse Andy.  Bless him.  Boom.  One stick and he nailed it.  No digging, no hunting, no nothing.  Just one stick.  Bless you Trauma Nurse Andy.  You are my hero.

The line lasted until Tuesday before it blew out.  Again.

Tuesday Feb 22nd – I was finally able to talk to my doctor and tell her what was going on.  She had been out of town.  She told me to go in straight away for a PICC line.  We went to a different hospital on her recommendation, and I’m glad we did.  The staff there was excellent.  She set me up to have the radiologist place the PICC.  They were all very nice, but the radiologist got a little nervous about doing too many x-rays on me.  He was concerned about the radiation and the baby.  So I wound up with a midline instead.  It was lovely.  It was purple.  It was a double-lumen, meaning there were two sites to which I could connect both my zofran pump and my fluids.  For a brief and shining moment it meant no more pokes.

Thursday Feb 24th – After taking a shower (and keeping the PICC dressing totally dry!  I swear!), I noticed that the dressing was starting to look… not right.  It looked brownish and really saturated, not to mention the deep ache I was feeling in my wrist, finger, and elbow joints.  I called Alere to see what to do and they said they’d have to call me back.  I waited.  And waited.  An hour or so later I realized that my shirt was soaked with fluid running out from under my PICC dressing.   I called again.  They told me to get to the ER immediately.  When Mom and I got there, I told them I thought my PICC was infected.  That got me back quickly and a PICC nurse came to see me.  When she tried to flush the line, the pain was unbelievable and I started crying again.  She said that the PICC, which was really a midline, had blown out of the vein.  No infection, but no functioning line.  She said the fluid running out was the fluid from my IV bags.  She pointed out how swollen my arm was compared to the other one, something we hadn’t noticed before.  She said she could try to put another one in for me at bedside.  “Okay,” I said, “Do what you gotta do.”

It was harrowing.  She tried and tried to get it in, but she just couldn’t make the turn at my shoulder.  When she flushed it, the joint ached indicating that it was not in a vein.  She pulled it, and for the first time in a while I wasn’t attached to anything.  I went home and got the zofran pump going on a subcutaneous site in my leg again.

Friday Feb 25th – I went in to see my doctor at 1:00.  She took one look at my arms and said, “No more IVs.  No more PICC.”  We are at the point where the risks of me being stuck again outweigh other risks.  The good news is, after a lot of really hard work on my mom’s part, I had been able to take in fluids in the form of ice chips and frozen cranberry juice.  I had also been able to eat in a minimal way.  We had reached the wait and see point.  She wanted to see how I did with the Mom treatment through the weekend.  She said that if I got dehydrated again to go straight in.  Don’t let anyone but an anesthesiologist try to put in an IV.  And the IV would be only temporary until they could get a central line placed.  Scary stuff.  A relief though because I’m at the point where I see the little pink IV needle and I start to panic.  But the good news was, I felt well enough for my husband to take the Grasshopper, Mom, and me out to dinner for my birthday.  I ate part of a baked potato and salad.  I call that a huge win.

This weekend we worked hard.  Mom worked hard.  We just tried our best to get as much fluids in as possible.  Food was a bonus.  Same on Monday.  Yesterday was not a very good day, but Mom and I think it was because we didn’t get me eating immediately.  Today was a much better day.  I had another appointment with my doctor who was thrilled at my progress.  She said to just keep doing what we are doing.

At this point, the only thing that will fix this is time.

And on a final note:  Thank God for my mother.  If she was not here, I would be in the hospital right now with that central line.

Hyperemesis Gravidarum, Home Health, and the Hospital Yo-yo

medicine-thermometer-tablets-pills

That is the best title I can come up with.  Went to the hospital again Wednesday and came home that night.  In and out, back and forth. Like a yo-yo.

Thursday afternoon Alere came out to start ivs and a zofran pump.  Had that going since Thursday afternoon around 4.  They gave me lactated ringers.

Yesterday my Ketones were 4+.  Today they are 3+.  Still bad.  Yesterday I threw up so hard I couldn’t breathe.  It was a really bad day.

Baby looks good.  I wish this would just end but I make healthy babies.  I think wishing I could have a miscarriage makes me a pretty awful person but I am too sick to care.

I had a little meltdown this morning and cried and cried and cried.  I am trying hard not to look down the time tunnel, but that’s hard to do.

Hyperemesis Gravidarum Sent Me to the Hospital

medical doctorThe hyperemesis gravidarum landed me in the hospital for the first time this week. I’ve been feeling pretty bad for the last couple of days.  This morning I called my doctor’s office.  She’s out so I had to talk to a different doctor.  He had me go into the hospital’s Labor and Delivery ward for fluids.

I felt pretty good while I was there getting fluids.  It helped that it was during the time of day that I usually feel good.

I had to explain to a very handsome young doctor about the zofran and the pooping and the enemas.  Talk about humiliating.

They send it a paramedic in training to start my IV.  Big mistake.  I warned him that I’m a tough stick on a good day and this was not a good day.  He smiled and said, “Don’t worry, it’s my first time.”  I was pretty sure he was joking so I smiled back and said, “I bet you say that to all the girls.”  Okay, now what I meant to say was, “I bet you say that to all your patients.”  It came out so wrong.  I was so embarrassed that I hid under the blanket.  What a day.

They took blood (all came back normal).

They ran 2 bags of fluids and 8 mg IV zofran.

I managed to eat some green Jello and some baked potato which made me feel worse.

I managed to pee.

Dr. Hottie came back in, told me I was fine and sent me on my way.

“Just keep taking the Zofran.  If you feel persistent nausea or dizziness, come back in.”

I said, “That’s hillarious.”  I wasn’t smiling.

My doctor’s office was supposed to have home health set up for me.  I wanted to be going home to either continuous fluids at home or a zofran pump or both.

What did I go home with?  “Just keep taking the Zofran.  If you feel persistent nausea or dizziness, come back in.”  Freakin’ hillarious.  Also, I should take colace for the constipation.  *facepalm*

We came back, picked up the Grasshopper from daycare on the way home, made it home, and I threw up whatever was left in my stomach.  I felt much better afterward.

I feel like crap.

I have an appointment with my own doctor on Wednesday morning.  It cannot come soon enough.

Also, I totally forgot it was Valentine’s Day, so the Grasshopper didn’t have any cards or candy to give out to her friends.  So to top everything off, I feel like the worst mom in the world.

Hyperemesis Gravidarum Medication Update

I had an appointment with my doctor this morning.  I was very pitiful.  The hyperemesis gravidarum has kicked in and I was pretty sad.  I am feeling like utter crap.  I’m trying to avoid the F-bomb here because I know my mom reads this, but that’s the way I’ve been feeling lately.  Horrible.

My doctor went ahead upped my zofran dosage to the full 32 mg.  Since I don’t want to wake my carcass up at night to take it, she suggested doing every 4 hours.  That’s bunching it up a lot, but that’s okay.

One thing to be aware of with high doses of Zofran is constipation. Severe, severe constipation. When you’re taking it, you’ve got to be prepared to deal with that whether it’s through fiber pills, stuff like senekot, or enemas. *shudder* It sucks, but it’s the reality of Zofran use.

She also had me add in benadryl to see if that helps with the nausea.  We talked a bit about fluids.  Since I’m able to drink still, she doesn’t want to make me a pincushion just yet.  She did say to not worry so much about eating solids and mostly just worry about fluids.

So I’m worrying about fluids.  Thankfully there is a Jamba Juice a few blocks from my house.  I can still drink those.  There’s one called the Protein Berry Workout that is working out fine for me at the moment.  I have them put whey protein in there along with fiber and a daily vitamin.  So far so good.

We also talked very briefly about medical marijuana, something that is legal in California and does seem to help women with hyperemesis gravidarum.  I haven’t made up my mind on this yet, and I may or may not post about it if I do.  I don’t smoke pot, and I have no interest in smoking it, but if there is something there that might help then it may be worth at least thinking about.

She also wrote me off of work completely until April.

The Hyperemesis Gravidarum May be Starting

I’m sorry.  I know it’s not right of me to whine, but I just really don’t feel good today.  A couple of times, I thought today was surely going to be the day I would toss my cookies for the first time.  I don’t feel that bad, so I feel guilty about whining.  I’m not bleeding from my damn eyeballs.  But you know what?  I sure don’t feel good.

I haven’t taken zofran today.  I have two different ones.  I took the generic from CVS last night and I was up late with my heart racing, which was weird and a little scary.  The generics from Walgreens haven’t ever done that to me.  Now, do I know it was the Zofran that did it?  No.  But it was pretty weird.  Right now at my office, all I have are the CVS generics.  When I get home, Zofran will be the first thing to cross my lips.

I had a craving today for Nacho Cheese Doritos.  I mistakenly indulged that craving and ate 2 bags.  It was good.  3 hours later though, and I’m kind of wishing I hadn’t.  I have this really weird and unpleasant taste in my mouth.

I just want to go to bed.

medications-cure-tablets-pharmacy