HG Awareness Day -- Our Journey

In the same way that HG seems to have completely taken over my blog for the last almost-year, it completely consumes your life. I still have not completed the PICC line series because I am editing pictures for it, a surprisingly long process, but I wanted to do this.  You see, today is Hyperemesis Gravidarum Awareness Day.

Didn't know there was such a thing? 

Yeah, me either, until this year anyway.  In fact, prior to this year I was completely and blissfully unaware of pretty much anything to do with HG.  Ignorance, as they say, is bliss.

While I certainly shared a lot here on the blog about infusion pumps, IVs, and doctors appointments I feel like I never really talked about HG.  I know that sounds really contradictory, but I rarely touched on the emotions or described how sick I was, it was certainly implied but never explained.  This was largely because acknowledging hell, while you are walking through it, is incredibly hard to do.  I worked extremely hard at remaining positive, and admitting out loud how hard day to day survival was ... well, that made the reality, the depression, and the fear all that more real.  It was easier to just focus on the mechanics of day to day living -- how to use a Reglan Pump, how to sleep with an IV hooked up to you -- rather than begin to touch the explosive iceberg of how it made me FEEL.  

I think I will attempt to do that now.  Because this condition is horrible, and the only way we will ever be rid of it is to build awareness and hopefully a cure someday ...

The hardest part of HG, emotionally, is the isolation.  It is deeply, profoundly, cripplingly isolating.  

Showing off after my first IV.  I had over 40, not including
the 24/7 infusions with the PICC line.

I was bedridden at first, so I was away from my husband and children.  I couldn't go anywhere at all for the first several months, so I saw no one outside of my immediate family.  Even once I was a little better, actually socializing was pretty impossible.  I couldn't go anywhere with food for fear of getting sick.  

And no one gets it.  I had a lot of loving people around me, but I was the only one vomiting bile several times a day.  I wouldn't pretend to understand what it was like for those who love me to have to watch me deteriorate, either.

The time that is meant to be your happiest is also your most miserable.  You are robbed of the joy that pregnancy brings.  While no one is comfortable for ALL of their pregnancy, the very nature of it is physically a challenge for most women, there are still good days.  Still things to look forward to.  While the end result of an HG pregnancy is the same as that of a regular "fluffy" pregnancy -- you have a baby -- the joyful stuff is difficult, if not impossible, to just enjoy.  

How much medication will I have to take to not puke on my guests at the baby shower?  Will I even be able to sit up that long?

Every time the baby kicks you get more nauseated, its like motion sickness from the inside.

I don't marvel at my changing body, I weep as I see myself deteriorate.  

While I get to see my baby a lot at all these ultrasounds, I hold my breath for the first 10 seconds until I see that flash of a heartbeat is still there...

Small sample of medical supplies

My first trimester is a blur to me now.  Honestly, I don't know how we survived.  I barely made it out of bed most days, I hid under the covers, dry heaving and sobbing, while my husband cooked the kids dinner.  I started to loose weight, first only a few pounds, then twenty.  I could see that my legs had actually atrophied from being so bed-ridden.  Neither my husband nor I really told anyone.  At that point we were both really thinking this would lift soon, surely.  I shared much of my later trimesters on Facebook from my phone with friends and family who'd ask, but I couldn't even get to the computer in the beginning or stand the sight of my phone scrolling.  When I was able to, I had to stay away from Facebook and Pinterest because of all the food posted on both.  

At the end of that first trimester I was incredibly sick despite being on pills and my doctor panicked and began my home health care journey.  Any hope I had that I would be "normal" again was foolish, but I wasn't at death's door anymore.  Anti-nausea medication is poorly named because it does not, in fact, remove your nausea.  It makes it so you throw up less, if you are lucky.  Treatment for HG is more hope than science, the medications I was taking are not approved for use in pregnant women and are usually given to those undergoing chemotherapy.  

I eventually did get a reprieve from the actual throwing up, but I never stopped the nausea or dry heaving.  I actually wretched so bad the morning of my induction I was scared I would pull muscles again and it would hinder my ability to handle labor.  

While other pregnant women could look forward to things, I was surviving.  While other pregnant women could indulge in cravings I was avoiding food at all costs or identifying my "safe" foods (the ones I magically could keep down or were less punishing for me to throw up).  While other pregnant women were combing over baby name books, reveling in the exciting hope and plans that come with the addition of a new person to the world, I was vomiting thirty times a day.  I was hurting, everywhere.  I was dry heaving more times than I could count with such force I pulled muscles.  I burst blood vessels in my eyes and capillaries on my face with the force of my throwing up.  I didn't need to see or think about, or smell food to get sick, the way normal women with morning sickness do.  Speaking, the simple act of opening my mouth, would make me throw up.  I would whisper to my husband when he'd ask me something, because the vibration of my vocal chords would make me throw up.  I had the constant taste of death in my mouth.  I was so weak that moving at all, was just too much some days.  

Source: http://www.helpher.org/

My stomach was covered in bruises and welts from my infusion pump and my bad reactions to it.  My arms were littered with puncture marks from IV sticks, at least half of them failures.  My veins were so scared they were palpable to even my untrained hands because they were so hard.  My lips were permanently chapped from the near constant state of dehydration.  My gums would bleed because of how much I was puking and because I could barely brush my teeth because the toothbrush made me gag -- a sick irony if you ask me.  I have scars from both of my PICC lines.  Our house was taken over by medical supplies, boxes arrived each week and my husband moved furniture based on how easy it would be to drag an IV cart around.  

I wanted desperately to not be pregnant, but was simultaneously terrified of my pregnancy ending.  I was supremely guilty for thinking of myself.  I wanted relief, and the only way I'd get it was to survive until my due date. I was terrified that I wouldn't get better, that we wouldn't make it, that there would be some horrible lasting impact on my baby from lack of nutrition or the countless medications I was taking.  Some women with HG suffer from organ failure.  Some women lose their baby.  Some have even died themselves.  

It was hell.  And few people can begin to approach understanding it because we all have our own experiences ... and we all have our own challenges and crosses to bear.

At three years old, the Beans drew me with an
IV and infusion pump because it
became normal

HG was undoubtedly the most challenging thing I have ever lived through.  It changed me as a person on a level few things can.  Honestly, I cannot think of an element of my life it did not change.  The experience taught me a lot about myself as a person, a lot about my incredible husband, a lot about my closest family and friends.  I took refuge in my faith because I had little else.  I watched both of my existing children mature in a way that was both painful for me and warmed my heart.  

I read somewhere that women who's mothers battled HG have a higher risk of developing it themselves.  This saddens me more than I can express.  My daughter is already an HG survivor and if she chooses to become a mother she may have to face it in a different way.

This means I have to do my part in raising awareness over the next twenty some odd years.
This means we need to find a cure, or at least a reasonable means of treatment.

Now.   

The Maternal Fetal Sporran Wearing Update

Just a medical update here, we are still hanging in there and fighting the good fight.

I had another appointment with my regular OB after the last one where cereal and crackers were suggested.  Proactive healthcare is always important, but with HG where things can change so rapidly and it is about more than just you?  Then it is critical.  I was hopeful that this appointment would make me feel better and it did.  He basically admitted not knowing what to do with me and sent me to a maternal fetal specialist -- commonly referred to as a "high risk" OB.

So I was a bit nervous heading into that appointment.  There is something just so intimidating about something people call "high risk" even when everything prior to that was all good news about the baby.  I am the problem here, but her status could change at any time and that fills me with my fair share of anxiety.  There was also the tension of knowing that my OB had politely tapped out and was willing to just keep me going as I am, so this doctor was where my hope is resting.

The way this office operates I came in and filled out my novel of paperwork then had a looooong ultrasound.  Baby girl, whom we have been calling Pinkie Pie per the Beans, looked great and spot on her gestational age.  Some of her measurements were a little small and I have never had a "small" baby so that made me a little uneasy, but no one else is concerned and it is still early for any worry.  She stubbornly refused to turn but had no shame in giving us a clear "I am a girl" shot.

The "bad" news is that my amniotic fluid is pretty low.  I have never had that issue before, so I did run to google and have three heart attacks already.  Being informed can be such a double edge sword.  You would think I know better but, nope.

Then we sat in this room with a crazy comfy recliner for me ... I would have happily stayed there for hours if they'd let me be.  My endurance is down a LOT so all the moving around it took to get ready, get there, sit in their waiting room, have the ultrasound, etc.  It was a lot.  But we had to move after my vitals were taken and we went to his office.  I started to feel a little more nervous now because no one had really told me anything from the ultrasound yet.

The doctor came in and one of the first things I noticed was that he was wearing a sporran.  For those not sure what that is, here is a picture ...

Wait ... what was I saying?

Oh yeah, *ahem* the sporran is the bag thingy around his waist.  For as awesome as it would have been (for me anyway, Paul Bunyan may have thought it was a bit unprofessional) the doctor was not that guy's twin, and his sporran was more like this though much more worn and had no tassels.

You may recall my love of all things Scottish, so the sporran totally made me smile and put me at ease.

Ultimately, we decided to try prednisone first.  I go back in two weeks, my fluids and caloric intake need to be a lot better for him to be happy.  If they are, then I am on steroids for 18 weeks.  Not ideal, but less invasive than the next (and what everyone refers to as the last) option.   He is also running some bloodwork for my thyroid to make sure it is doing what it should be.

No, that had no topical value, but I wanted to make sure you knew what a sporran was and figured two more would help.

Anyway, I have two weeks on the most vile tasting pill I have ever tried to swallow.  If it helps, great, I take it until this kiddo is born.  If not, we have one more option (a PICC line) and we will cross that bridge then and there.  Ironically, there must be some degree of regional preference because I know within my HG support group many women are baffled at my doctors' caution at just taking the leap and doing a PICC.  Everyone is aware of risks associated with them but they seem to be more common elsewhere.

So I see the normal OB next week, the high risk sporran toting doc the week after and we go from there.  On wards and forwards!

Outside of that, I recently discovered that one of my posts here had been shared within my HG support group on facebook.  It made my day.  If you have come across any of my HG posts I hope they help you, it really does make this seem less isolating and frustrating to know that it may help or educate someone to read any of this stuff. :)  If you need info about subq pumps here is a post that starts that series, and if you want some smart arse takes on HG in general I have a few options for you here, here, or here.

HG Treatment Post 4: The Tips & Tricks

Living with "Robin"

This is the final post in my HG series on Zofran/Reglan Infusion Pumps.  To see the intro post, which will list all other posts in the series and link you to them, please go here.  If you are here because you are about to start a Zofran/Reglan Infusion Pump, don't worry!  For all the garbage that may come with them, it is by far better than the crippling illness that HG is.

So here is the last (planned) post in this particular series.  I am hoping to slap all the little tricks and tips in one place.  Both for ease and brevity of the other posts.  I suspect this one may get edited and added to a few times, so if you are reading this and have something you think may need added please mention it in the comments!

The tips are specifically about the pump and treatment of HG with the pump.  All other HG related stuff you can find in the search bar, in the menu bar or using one of the tag words over there on the right.  ------>

Medicine & Supplies:

• Have a spot for all your non-refrigerated meds to keep them together.  
• Have a spot for all your medical supplies (orbits, flushes, IV bags, alcohol wipes, etc ...).  
• Have a spot in the refrigerator that is for YOU.  Your meds and safe foods or drinks if you can.  That way you only have to hold your breath and look in ONE place, disregarding all the vile foods your loved ones are still consuming.  
• If you are on lots of prescriptions at once take pictures on your phone of each before any doctor appointments.  They always ask and I can't keep all this crap straight so I just whip out the pictures and can tell them all the details with little effort.  
• You can take a demand dose of medication with the pump if needed.  Ask your doctor or nurse about it if you are having a hard time.  Just note that a bolus of meds can intensify any of your reactions to that medicine.  

You get lots of mail.  It just isn't FUN mail.

General:

• Have a Notebook.  Just a special pad of paper for your HG stats and nothing else.  When you have to call your nurse they will want various stats on a regular basis from you.  These may vary on your needs (for example if you have BP issues or have GD they will need stats relevant to your stability with that).  For me they always wanted to know the following stuff:

1. Ketones today
2. Weight today
3. Fluids drank in last 24 hours (regardless of what stayed down)
4. Percent of pre-pregnant diet that I ate in the last 24 hours (regardless of what stayed down)
5. Number of times I vomited in the last 24
6. Number of dry heaves in the last 24
7. If I was nauseous more than 6 of the last 24 hours
8. How my infusion sites are doing
9. How my IV sites are doing (if I have an IV in) and how many bags of fluids I have had in 24 hours
10. Any reactions to the medication?  Headaches?  Feel baby moving? Anything worthy of me wanting to comment on it (like if I am in pain or having some kind of new weird symptom)

• Having all of that ready to go in one place is valuable for both me and the nurse. I also have a document of it for my own records to take to the doctor.
• I also keep any IV bag changes, pump changes times in there too so I can make sure my rates are what they should be.  For example, my IVs suck and die fast.  When I remember that I have a new bag at 7:00 AM I can do the math and see that there is a huge problem if I am barely a third into it by 1:00 PM.  

Constipation:

One of my bolus demands.  I am on the max does of meds I
can tolerate, so I generally do not do this much.  

• Take something.  Ask, beg plead from your doctor for something medicinal to help if you are on Zofran it is simply irresponsible to take nothing for constipation.  
• Use a stool under your feet. If you don't believe me when I say this well help, feel free to google "GI health and elevated feet or squatting" and prepared to be dazzled by lovely cross sections explaining WHY it works.  Personally, I'd be cool taking my word for it -- it helps.  
• Suppositories hurt like a mother !@#$er.  The box won't tell you so, but OMfreakingG they made me want to die. 
• Tucks pads.  Get them.  Keep 'em in the fridge for added coolness.  
• Talk with your doctor or nurses about how bad it is getting, constipation is potentially very serious if you don't get relief in a reasonable amount of time and you may need medical help. 
• Don't kill people when they tell you to eat watermelon and other water rich foods.  Categorize your shows of restraint here right with the people who "cracker" and "ginger" you and consider the money saved in bail as a nice savings for buying yourself something special after the baby is born.  

Site Issues:

• If you are getting red welts, sore areas, warm areas, etc: Describe them to your doctor/nurse team to make sure it is nothing serious.  If it is "normal" then try heat and or ice to help relieve the pain.  Some people find greater help with one versus the other, some people need to alternate.  
• My nurses recommend "warm moist heat" like a washcloth that was in really warm water.  I found this both annoying and uncomfortable/short lived.  I also dried my poor skin out this way even more.  So I used a rice sock, worked much better.
• Benadryl can help site reactions, ask about it.

Day to Day with the Pump:

• How do you sleep with it? I spoon it with it resting on a pillow that I cuddle with and curl around.  Some people leave it on a nightstand because the tube is pretty long. Some people hang it from their headboard somehow.  I also use a lot of pillows to prop myself into position so I don't roll.
• Showering?  Easier to leave it off in my opinion.  This said keep those showers quick and careful.  Sit down if you can because you are likely weak and fainting-prone.  
• Hurts to poke yourself?  You can go fast, you can ice the area before to numb it, or you can buy these thingies which I am told helps and fits the parts I have.  Double check before buying because they are nearly $30.  This video shows you how they work and it makes sense this would help if you have needle issues in particular.  
• How do I wear it?  Pre-maternity clothes I just had it high enough that my pants were below it and it just came out from under my shirt.  Now that I am in maternity clothes, I turn the tubing to face up so that the tubing feeds out of the top of my pants.  I almost always wear my pump in the purse thing on my left side across my body.  So it hangs on my right shoulder cross my body with the pump is on my left side.  See the picture that I cannot believe I am putting on the internet LOL  (and no, I did not edit it, that is the selfie setting on my phone)

• When the catheter is on my right side I just aim the tubing to my left so it still comes out my left side of my shirt to lessen the chance of the tubing getting caught on anything.
• If your tubing gets caught it will terrify you at first, but its really not as big a deal as you think.  Chances are it will do nothing, but if it pulls it will just pop the snap piece from the tubing off, leaving the part IN you untouched and unharmed.  Just snap back on.
• P.S. In the above picture of my 19 week pregnant gut you can barely see the lines left from the tubing resting against my skin and if you look really closely you can see little spots.  Those spots are my old Reglan sites.  Compared to the giant red welts and bruises that Zofran left me with my tummy looks about a million times better.  

That is everything I can presently think of.  If you have any questions please feel free to ask.  I do not have a PICC line and my IV is gravity fed, so if you have an IV or medicine infusion via PICC I cannot provide you with any BTDT ... yet. I might at some point, but I do hope to avoid it.  I will be working on a post or two about IVs and hydration soon too.  

HG Treatment Post 3: The Site

This is the third post in my HG series on Zofran/Reglan Infusion Pumps.  To see the intro post, which will list all other posts in the series and link you to them, please go here.  If you are here because you are about to start an Infusion Pump, don't worry!  For all the garbage that may come with them, it is by far better than the crippling illness that HG is.  

So here we are, at the part that may be freaking out the most.

Allow me to preface this post by saying that while I am not a masochist, I am not a person with needle issues.  I, under normal health, have no problem with seeing skin get poked.  The troubles I have had with IVs (another story for another time) has made that less true, but the infusion sites themselves are no biggie to me.

I know that is not the case for everyone.  If you cannot stand the idea of poking yourself perhaps you have someone who can support you.  I know my husband, for all his manly, bearded Eagle Scout glory, cannot stand needles and gets light headed just hearing me talk about this garbage.  I respect that, in all seriousness.  He is my support network in the ways I need, I don't need him to do this.  You may, and that is okay.  Did you hear me, that is okay!

Now if you have no one who can help do the poking, trust me you CAN do it!

You may also get used to it.  Bottom line, I think the ickies of this are far more tolerable than anything HG dishes out when unmedicated.  It is worth it, you are a warrior, hang in there!

Now to the details.  Deep breath, I will include pictures of everything except me actually piercing my skin.  This said, for the really squeamish, there will be pictures of the catheter IN me, though you can't see anything I know that bugs some people.  

So this is the Orbit.  It comes in a little sterile pack with the tubing and catheter ready for use.

This is my supply set up initially.

The trucks are not necessary, but my fan kept blowing the stuff around and it helped.  LOL

My set up looks different now, but I will include both.  Taking this one part by part first .... that looks overwhelming and is really cluttered.  I did not take the picture for the blog, I took it for me so I would have a check list of the stuff I would need.  So it isn't very pretty, and things like the Notebook are not necessary for the purposes of site change (but it is necessary as I will discuss in post 4).

So in that picture we have the Orbit, which is the actual catheter and tubing (more detail in a sec).  The clamp is there so that you don't accidentally give your self a bolus of medication while changing sites, but I don't use it anymore.  I just take the tubing off of me first thing so that if I accidentally squeeze the syringe it won't push meds into me.  Seemed easier.  Skipping the Tegaderm in the center for a second, then there is a bandaid for the old site, alcohol wipes, the sharps container to drop the new site's needle in.  Also the medicine syringe is necessary and the instructions and paperwork are in the background there because I always had them at first. I am not even sure where they are now, I just don't need them.

Now that Tegaderm.  I have ridiculously sensitive skin.  All adhesives make me react, so the prospect of having anything stuck to my skin 24/7 was daunting to me at first.  Initially my nurse gave me Tegaderm, which is like the love child of Saran wrap and super sticky tape.  Tegaderm is often used in IVs, you can see the clear stickery sheets in almost all of my IV pictures, including this one:

Tegaderm is the clear sticker under everything,
everything sticks to it and not me to try to reduce my reaction.

So I would sterilize the area with alcohol, let that dry and stick the sheet of Tegaderm down.  Then I would actually pierce through the Tegaderm so when the Orbit stuck down it did not touch my skin, it was all resting on this Tegaderm.

Not a good picture, but you can see the plastic-like stuff
stuck to me around the circular part?  That is the Tegaderm.

Since Tegaderm is supposed to be hypoallergenic (a word that makes people as allergenic as me laugh) it was supposed to help.  In a lot of ways it did, but it is the stickiest stuff ever AND because I had to change so often (10-12 hours) that stuff was still in its prime.  Thus, it hurt like a mofo to remove.  Add to that I had those nasty site reactions mentioned in post one?  Oh it wasn't pretty and it certainly hurt.  So we switched to this stuff, Skin Prep.

Skin Prep is weird, it wipes on like an alcohol swab (which it has in it, so it is sterilizing as I use it) but dries like a thin almost waxy coating.  The adhesive of the Orbit then sticks to that, not my skin.  It has been very helpful.  If nothing else, removal of the Orbit is no biggie because while it stays in place okay it does not bond with my skin as strongly so it comes off better and with less trauma.

Now this is my present set up.

See. less stuff and it is easier for me now.

Now the Orbit pack itself.

First there is the tubing, which screws on to the syringe and delivers your meds to the catheter.  

The catheter initially looks like this on top, the part you hold.

The underside of it has the needle with the catheter around the outside of it.  This one still has the shipping protector thingy around it so it will look huge.

You can also see the paper backing for the sticky part that actually will go against your abdomen (or thighs).

Now to take off the paper and the shipping thingy.  Here is the catheter around the actual needle you use.  If you look closely you can see the catheter stops like half way down the needle.

It is not very big, the needles they use for IVs are massive comparatively.

Once you prep your skin (with alcohol or Skin Prep or whatever as long as it is sterile) then you pinch up what you can fat wise in your abdomen, flank, or thighs and push that needle in at 90* angle.  Once you did that it will look like this:

It isn't comfortable, but the faster you get it over with the better.

Then you remove the needle part by pinching those tabs on the side and pulling out gently.  You don't really feel anything except maybe emotional relief at this point.  This is the needle without the catheter on it.

Take that needle out and this is what the site will look like now.

That is the exposed catheter thingy, no giant hole in your side. There is no visible hole there, really.  I know there is some kind of something but its not whatever I had in my head when I imagined it.

Now you snap the tubing's end piece on.

Boom.  You did it!

Now you have to push the Yes/Start button on the pump a few times to resume the session and keep the meds flowing.  This was all discussed in post 2.

Now, if you are wondering what the catheter itself looks like, this is one that I have removed from myself.  This one was in me, so there is medication in it if you look, but no blood and gore.

Not so bad, right?

Oh and there is also this thing in the Orbit packs.

I have no freaking clue what it is or what it is for.  LOL My nurse didn't either so it is apparently not important.

Once they are in I don't feel them now that I am on a medicine by body accepts.  With the Zofran I had a pinching feeling initially that increased to discomfort the longer a site was active.  Reglan has been accepted by my body and does not hurt.

As I have lost weight, a double edged sword to say the least, poking myself has gotten a little harder.  When I started I was padded enough to have a decent amount of fat to poke into.  Now?  Well, I have a lot less, so it is a little uncomfortable but if I get it over with fast it isn't so bad and I have some suggestions in post four about this too.

When I remove a site sometimes I have a mark from it, and sometimes a little bit of medicine (and occasionally a tiny bit of blood) will come out of the site.  Not painful either, except when I was reacting to the Zofran.  Slap a bandaid on it and move on.  For the sake of clarity, this is what one of my Zofran sites looked like.  It is not an extreme reaction so you may look like this with it because Zofran is a skin irritant.

Now I have just dots and slight itchies from the adhesive because that is how redheads roll.

So that is the the tour of my infusion sites for the Reglan/Zofran pumps.  Next up is the random hints and tips I have that I figured I would stick in one post to try to not make each of these a total novel.  As always, please feel to ask questions and know that this is meant to help not explain. I am not a medical professional, just someone sharing her experience.

HG Treatment Post 2: The Pump

This is the second post in my HG series on Zofran/Reglan Infusion Pumps.  To see the intro post, which will list all other posts in the series and link you to them, please go here.  If you are here because you are about to start an Infusion Pump, don't worry!  For all the garbage that may come with them, it is by far better than the crippling illness that HG is.  

So this is the pump.  The device that actually holds and administers your 24/7 medication.  It is quiet as long as your med syringe is full and in the right place, and the batteries are good. In those cases it will beep at you, but I don't actually hear it running otherwise.  You wear it in a purse thingy, which you will see a little bit later in this post.

This is the pump in its little pouch.

Here is me with my bump and the pump, like 17 weeks along.  This is how I wore it, they tell you that you can wear it like a fanny pack, but my dignity and expanding waistline made this impossible to consider.

I had it like 3 weeks by that point and was more than used to it.  I had also named it Robin because it was my trusty side kick.

A nurse from the home healthcare company my insurance uses came out to teach me how to use it.  They give you packets of info and walk you through each step, it seems intimidating but it really isn't.  It feels like a ton of steps, but really it isn't.  You get used to it within a week and are a pro in no time. Ask all the questions you want to, your nurse is there to help you and will not judge you.  Even if they do judge you, who cares, you need to know this stuff!  Ask questions and keep asking until it makes sense to you.

The pump itself has the following relevant parts.

The screen display is easy to read on mine.  A monkey could do this -- or a violently ill and seriously weak pregnant woman, whichever you happen to be.

I only use my info button for two things 99% of the time.  First, I hold it down to lock and unlock the keypad, that way I don't bump it and accidentally stop the flow of medication.  Second thing I use it for every few days is to check the battery.  Simple.

The plus and minus arrows are not something I use unless I have to call the nurse for a demand dose.  Even then I rarely need it because it is just there to adjust the amount I get which I have personally only had to do once.  The nurse who came out to my house did all the set up when I initially started and when I changed medications so I did not need to actually set my pump up.

The green button, or yes/start button is what you push to start your pump or to agree to something.  Inversely and equally obvious, the stop/no button halts the flow of medication or is the no command if you are doing something.  If you have to actually DO something, like a demand dose of medication they walk you through it over the phone or in person.  It is really simple even if you are sicker than a dog.  You will need to use these buttons independently when you have to change syringes when your meds run out.  (See this post for that.)

The FF and Back buttons move the syringe's plunger pushy thing.  Technical term, of course.  You need to use that when you load a new syringe.

Last is the on/off button and I think that you, even at your most nervous and unsure can figure that one out.

On top of the pump is the arm that holds the syringe in, the bed the syringe sits on, and the plunger pushy thing for the syringe.

So here is the pump ready for a new syringe, old empty one still in there ...

Here it is empty, ready for a new syringe ...

The tube coming off the syringe is part of the "Orbit" set.  That is the next post and the one that may be freaking you out the most because you have to poke yourself.  Again, not as bad as it sounds.

You wear the pump in this little case thingy on a day to day basis.  As the pump costs like $5,000 to replace I advise keeping it in that silly case.  If you want to leave your pump on and shower they give you this clear case.

For the record, that is the first time I put it in there.  It is awkward and the $5k price tag scared me, so I always time my showers with syringe changes when I can.  You do have to be careful though with this plan, I have made myself violently ill being off the pump for too long.  It wasn't pretty at all because I was on Zofran so my body wanted to fight the vomiting but needed to do it ... I will spare you deets, but it ranks as my WORST puketastrophe as of yet.  You are not allowed to submerge an infusion site that is in uses, so no baths or swimming.  Bummer, floating in water can be so soothing for me.

Anyway, those are the parts in post four I will talk about some tricks I have learned with the pump (like how to sleep with the damn thing).  For now, we move on to the part you may be dreading the most ... the catheter site, or in other words, the part where you have to poke yourself. (Spoiler, it is no where near as bad as HG so hang in there!)

Next post in the series is here!

HG Treatment Post 1: The Meds -- Zofran and Reglan

This is the first post in my HG series on Infusion Pumps.  To see the intro post, which will list all other posts in the series and link you to them, please go here.  If you are here because you are about to start a Zofran/Reglan Infusion Pump, don't worry!  For all the garbage that may come with them, it is by far better than the crippling illness that HG is.  

So here, we go, right?  The meds.  While this may not be the first post in the series that you clicked on if you are set to start a pump -- because let's be honest you wanted to understand the pump and the poking-yourself part, amIright? -- it is in no way unimportant.  In fact, I slapped it as the first of this series because I would happily argue that the meds are the most important component you need to understand if you are walking on your own (or supporting someone through) hyperemesis gravidarium journey.

Initially I started on oral Zofran.  The pills were actually the generic Zofran, Ondansetron, which some people react to differently than the name brand stuff.  It certainly helped me a little, I felt better but it wasn't enough.  After 2 weeks I called my doctor's office miserable and dehydrated because I couldn't keep hardly anything down.  I wound up having a ketones level of 4+ which is the worst on that scale.

I was also miserably constipated.

A quick word about Zofran and Ondansetron ... the constipation you most likely will experience will be extreme.  Pills OR infusion pump.  Seriously, I made my nurse choke one day when I checked in over the phone by describing it as "pooping glass shards, assuming I am lucky enough to actually poop."  I joked here about how desperate the constipation got.  While I joked, eventually I was genuinely worried I was going to cause some kind of permanent damage to my body, even with colace three times a day.

It only got worse on the Zofran pump, mainly because the amount of meds I had increased.  I tell you this not to scare you, because you may not be as bad as I was.  I tell you to prepare you.  A friend who had HG and was on Zofran joked with me that she wished she could have taken the pills with a milk of magnesia chaser.  Seriously.

Example of the redness around a catheter
site.  Not the bet picture but it gives
you an idea.

So when the pills failed, I went to the Ondansetron/Zofran pump.  Then it got really miserable (for ME, don't panic if you are reading his and about to start Zofran).  Aside from the constipation, I also was having a nasty reaction at my infusion sites, where the catheter goes into my abdomen.  I address the Orbits and infusion sites in post three of this series and I will talk about this there too.  But for the purposes of this post, Zofran is an irritant to your skin.  the sites became very sore and I had to change them about every 10 hours due to the severity of my own sensitivity (I am a freakishly sensitive person though so you may not be as bad).  They would swell and turn hard, get red and warm to the touch.  And they hurt.  Sometimes a lot.  I did use a product called Skin Prep (more in post three) and that helped my reaction to the adhesive on the Orbit.

If you DO have a reaction at the infusion sites (which I have never heard of anyone having no reaction) just know that heat and/or cold will help.  I used ice packs and a rice sock thing I have and alternating between the two helped me, some people have better luck with one over the other.  But, you want to treat them ASAP because it will help!  Additionally, you can technically go two days without changing your sites, but if you are really uncomfortable they will urge you to change more frequently.  The longest I could handle was 12 hours.  Some people may actually get better after a week, so my nurse told me, like their bodies get used to the Zofran.  I was not one of those people.

Between the sites, the constipation, and the headache -- all known symptoms of Zofran for peeps who do not respond well to it, we decided to change to Reglan after 2 weeks on the pump with the Zofran.

The Zofran is the orange syringe. The yellow one is Reglan/Metoclopramide, different medication with different focus but same intent.  Zofran slows the gut, thus in many people reducing vomiting and nausea.  Reglan forces the stomach to empty faster, so the same final hope but different means of getting it.

The biggest issues people have with Reglan are anxiety, depression, and heart palpitations.  For some people this can be crippling and even dangerous.  I was nervous to try Reglan for these reasons, I have a history of anxiety if nothing else.  But I am SO glad I switched.  The infusion sites are nothing comparatively, the headache is gone, and I can *ahem* go to the bathroom with some degree of normalcy again.  My nausea is also much more controlled though it is not gone.  I occasionally feel my heart race a little, but I will happily take that over all the other garbage Zofran did to me.

Bottom line, *I* did not respond well to Zofran, but *I* am responding much better to Reglan.  You may not be the same as me.

I also have the oral Zofran pills to take when I need them, and I take Phenergan at night.  Phenergan knocks me out so it is not a valuable option for me during the day, helps me sleep fabulously though at night.  Additionally, I alluded to Colace before.  I take Colace three times a day, and occasionally I am allowed to swap out Colcae for Peri-Colace.  Colace is a stool softener, Peri-colace is that plus a laxative.  I have also tried suppositories but found that it was a lot of misery for no real result and
diligently sticking to my Colace and trying to get hydrated (mostly buy IV which I will address later) got me past that constipation until I switched meds.  Last but not least, acid production is an issue for HG sufferers and mine is mostly controlled with regular Pepcid AC at present.  

Regardless of what meds you take, speak very frankly with your healthcare provider regarding symptoms and your needs.  There are other oral medications you can take, and some of these may come in infusion pump form.  I have not had a need to move on from Reglan at present.

Looking forward to the next post in the seires regarding the pump, it does not matter which medication you are on.  My pump machinery itself did not change at all.  Just the syringe I stuck in it.  What *I* do to change things does not change between the two.  So if you are reading this and about to start one or the other the info all applies to you unless I state otherwise.

The next post in this series is about the pump itself.

HG Treatment Intro: Everything I wanted to know...

I keep meaning to do this, I know I wanted posts like this when I first was told I might be getting a pump so I could hear how other people handle it.  So here we go!

The everything I wanted to know about the Zofran/Reglan Pump series!

Both Zofran and Reglan (and probably some other medications that I am not aware of simply because I found one that is working for me right now) can be taken orally via pill or via infusion pump.  My doctor switched me to infusion pump Zofran when my vomiting was severe enough that I could not reliably keep down the pills I had been on, and the pills were really not doing much anyway.  It was typical to vomit more than 15 times a day, quite a lot more than that honestly because I just stopped counting once I hit double digits.  Its depressing (and exhausting) to puke so often.  On my worst day I imagine it was 30 times or more and I had given up any attempts to eat or drink as they seemed completely futile and miserable.

I think in all things medical, it is important to be your own best advocate.  This is hard when you are so ill, so hopefully you have an amazing support team/person who can help attend appointments and ask questions.

In the beginning I don't think I even realized how bad I was.  I was too busy surviving it.  I did not bother to worry about what it all meant, I was too busy just coping.  My husband was the one who started urging me to talk to my doctor because even though pregnancy always makes me miserably sick, this seemed worse.  This is my third child and my fifth pregnancy.  I did not experience HG with either of my miscarriages and my prior two successful pregnancies never made me this ill.

Anyway, while other pumps and services may differ, this is what my experience looked like.  I hope that it puts your mind at ease if you are here in anticipation of your own treatment.  If you are here merely from curiosity, hope that it helps educate you.

This is of course, not medical advice.  Simply my telling my story and offering advice and ideas as they may apply to you.  You need to speak with a medical professional in real life, not an online blogger who calls herself a rocket surgeon as a joke.

Please feel free to ask me questions if I need to clarify something!  Here are the posts in this series.

The Meds -- Zofran and Reglan, and everything I can tell you about them.

The Pump -- the parts and what you need to know about them.

The Site -- the pokey part, which isn't as bad as you think.

The Tips -- Living with "Robin;" hints and tips.

Oh no he di-in't!

I just came back from an OB appointment.  I am 17 weeks, HG is kicking my ass and I am having like nooooo fun at all.  I went into the OB prepared to be reasonable but to complain about the following.

• I am hooked to the infusion pump (Reglan now, Zofran was awful and not helpful) 24/7 and still spending more than 6 hours a day nauseous.  The 6 hours is an indicator the home healthcare company established.  
• I may not be puking, but I am dry heaving constantly and my body is trying to throw up daily.  I am miserable but not constantly vomiting, so while better I am not better.  Make sense?
• The reflux is horrible.
• Bolus doses of my medication make me much sicker, can I have something else on demand when needed that isn't Phenergan because that knocks me out for hours?
• The last thee IV attempts went like this:  Three ago she poked me twice (I think) and got the IV in.  It died 12 hours later.  Two ago she poked three times, blew two veins, and got it in.  Died about 14 hours later with constant intervention and flushes to keep it that long.  Last one took five pokes, three blown veins and she never got the IV in.  I am now a week without IV, my eyes are hot, I get winded talking, I feel super drained, and I am covered in painful bruises.  What can we do about this, because I do great the second an IV is in (as in I can eat and drink myself).
• Last but not least, I am obsessed with the panic that I am having twins.  My only ultrasound occurred at 7 weeks pregnant and was just an on-the-abdomen type so the image was terrible.  We saw a faint heartbeat, but everyone tells me that this is no reliable indication of a singleton pregnancy at all.  

So I wanted to have some conclusion on at least some of that.  I know there is some of that he cannot help me with ... but I had hopes that something would be addressed.

Nope.

I was offered no other anti-nausea meds and he never even addressed it.  Told me to take Tums or Prevacid for the reflux and see if that helps.  When I detailed how awful the IV attempts have been he interrupted me to say "I will not order a PICC line if that is what you are hoping for."  Um, who hopes for a PICC?!  I never said anything about one, I was concerned that is where we are heading because several nurses have commented about it.  Perhaps this has come up in reports or something because he was awfully vehement but not explanatory at all.  He said he only does PICCs in cases of parental nutrition, and I am not sick enough for that.  Um, yay?  So what does that mean.  "Let the nurses keep digging."  Uh, you offering your arm up for that?!  I cannot describe how unpleasant that is.

With the twin thing he only put the doppler do-dad on my abdomen for like 10 to 15 seconds so long enough to hit a heartbeat, but no attempt to listen for two, no uterine measurements to see if I am measuring around gestational age ... nothing.  Just commented that I have "at least one in there."  Har har, you funny Doc.

But by far the best part, that made me want to peel my ass off that paper covered exam table I was having so much fun balancing on was when he suggested I eat crackers and cereal.

Oh no he di-in't!

Then he added to that suggestion, which meandered its way into this post as shit to NOT say already, that I sip my drinks all day.

Oh so you mean I shouldn't shotgun them?  WTF! *slaps forehead* why hasn't someone told me this already?!

I actually thought of this scene while in the doctor's office.

I do sip.  It is how I force down my 30 ounces of fluids I am so proud of a day.  I also tried crackers, like 14 weeks ago.  Funny thing, when your throat is raw you start thinking about your consumption in terms of regurgitation.  Crackers hurt coming back up.  Mashed potatoes do not.  At least not as badly.  I will stick with my effing potatoes, thanks.  Blood coming up with the puke and bile is just not my idea of fun.

Ultimately, I am trying to just calm down and figure out what I want to do next.  I am writing this more to vent than anything.  HG is hard enough without having to fight for medical care that is helpful.  My doctor was super helpful and awesome before today.  Then today happened.

I want to spoil myself and wallow in my misery but other than lay here and keep trying to *ahem* sip my Sprite (the only liquid I can drink) I can't exactly do much.