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.

Testing & Pregnancy

If knowledge is power and ignorance is bliss, that must make knowing a painful yet empowering thing. Sometimes this is absolutely the case.

Recently I have been following the story often referred to in the news as the Bucket List Baby. On facebook, Prayers for Shane has become something I check regularly. Prior to Shane's birth it was a page I checked daily to keep my own priorities and emotions in focus as I navigate my own bumpy pregnancy. But I also continued to check it both before and after his birth because the intensity of love and beauty in Shane's family deeply touched me. 

I found myself reading the comments one day and several people indicated in one series of replies about their own refusal to have medical testing done in pregnancy in honor of Shane. These parents-to-be wore their no testing status as a badge of honor, firmly stating testing would make no difference in what they would do, so they didn't want to have it. 

While I am a firm believer in "to each his own" I have to say I disagree with those people, but perhaps not for the reasons you'd think. 

At ten weeks pregnant the option for a blood test was offered to my husband and I. This blood test could detect a great number of things I never knew was possible so early. By seeking out the fetal blood in my own blood stream they could determine the chromosomal health of my unborn child. 

I honestly was both amazed and terrified. 

My knee jerk reaction was: Nope. Don't want it. Like the people on those prayer threads and replying with genuine good intentions on that beautiful facebook page I asserted that knowing would make no difference. 

But my husband, ever the practical non-emotional-knee-jerk kind of guy gave me pause. 

What would we do IF we knew. 

Usually the darkest of options is what pops into our heads here. If something were horribly wrong, knowing gives you the chance to terminate. However, we wouldn't. It wasn't a possibility we would consider, this why I didn't want the test. Why I thought it was not valuable to us.

But there is more to life than black and white. There are a lot of grey areas. 

What if knowing meant we'd be prepared, emotionally? Shane's astounding parents were prepared, this the amazing acts of love and devotion in giving their son a lifetime before he was even born. He only was on this earth for less than five hours, but there was no shock and confusion int that time. Just love. What an overwhelmingly beautiful gift his mom and dad and other family members were able to give him because they knew. 

Beyond the most tragic of possibilities there are other things knowing can gift a family with. Time to emotionally prepare, research, seek treatment options, discover early interventions that can be taken ... ask parents of any child with special needs of any degree, these things are priceless. 

While my children are overall quite healthy their lives have not been without medical challenges. None of their challenges would appear on any of the screenings I am aware of in pregnancy, but I know what it is like to give birth and have the terror of things not being what you expect. 

Anything to remove or lessen the possibility of that is utterly priceless. 

So we had the blood work. A week later we were told that as far as the test could tell, our child has been graced with health and no chromosomal abnormalities. 

While I will be scared until I see this baby, and likely some lingering fear thereafter, it is one less worry. And that is priceless. 

So I don't judge parents who opt to not know, I urge those who do so to know that it isn't fear or dark motivations that prompt all parents to know. Sometimes knowledge is power, the power to face whatever it is that life may hand you in a way that is both dignified and prepared.  That is a powerful gift, not one I will turn down.  

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.

Nine Circles of Pathetic

Ever heard of the Nine Circles of Hell?  I loved Dante when we read it my senior year, I am weird, I know.

This is like that. If your rolling your eyes and thinking "Lawd, I hope this isn't anther depressing HG post" ... well, sorry. Come back in like a year, I might be done by then. Right now it's rather consuming. 

I'm presently waiting for doctor authorization and insurance approval for another round of continual IVs and a new medication for my pump.  I feel like I got run over by a semi and have not kept food or liquid down with much success for .... a while.  Time is a blurry thing.   And I am bored.

So without further adieu:

First Circle: Fantasizing about the food I will eat when I can, simultaneously gagging at the thought of the food I cannot possibly eat now. 

Here your punishment is dreaming about all the stuff you want to eat.  You can't do this all of the time, but when the waves of nausea abate enough that you find yourself with the energy and ability to dream of "normal" you let your mind wander to all the stuff you will binge on once you won't automatically vomit at the site of food.  Of course, these fantasies make you puke ... and the cycle continues...

Second Circle: Sobbing over anything because I'm pregnant and that happens, then sobbing because tears are a huge waste of hydration.

Hormones tearing through you at nine thousand miles an hour, you find yourself moved to "ugly cry" over a video your perpetually single facebook friend shared of her cat.  You hate her cat, but suddenly it is the most breathtakingly adorable thing ever and you find yourself weeping with the sheer overwhelming flood of emotions Mr. Twinkie buries you in.  Then you realize that you are weeping out the shit that is probably dripping into your arm via IV because you haven't been able to drink in ... a while.  So you cry over the senseless waste.  Spilling more tears.  And that cycle continues too.

Third Circle: Philosophizing about which is better -- dry heaving or actually puking.

Its a toss up sometimes.  The dry heaves are violent, because your body is as determined as a three year old in a tantrum to complete the job.  But for whatever reason, you can't *ahem* get it up.  Irony, no?  Anyway, puking sucks.  Dry heaves suck too.  When you do both so often that you find yourself critically analyzing which is harder on you, you really have hit a new level of pathetic.

Fourth Circle: I watched Dora, Team Umizoomi, and Paw Patrol with the kid not in the room because the remote was too far away and energy is a precious commodity.

Seriously, that is an hour and a half of my life I will never have back.

Fifth Circle: I am like a dog ... I just want to take a ride in the car. 

Sun light.  Fresh air.  I miss anything that isn't this house.  I just want a ride in the car, but it might make me puke ...

Sixth Circle: When you can eat, you consider regurgitated texture as equal in importance to taste.  

If I am going to eat, then odds are it might not all stay down.  Why try something like bread or crackers when something like oatmeal or even baby food is the same regardless of if it is heading up or down?  Oddly this makes it feel a little more tolerable and like less work.

Seventh Circle: Mumus.  I am considering them.  

My weight keeps dropping, but my tummy keeps swelling.  I don't think my uterus is this big at nearly 16 weeks pregoo, so I am blaming the bloat from the side effects of Zofran (like constipation that could kill and elephant).  If this wasn't enough misery, it means that my normal clothes are less than comfy, so maternity clothes are the option.  Except they cover your tummy.  They actually touch your belly.  You know, the tummy that is sore as a mofo because of the icky infusion sit reactions I keep having.  Bleh.  So when you are too fat for normal clothes and too sore for maternity clothes ... mumus.  God help me.

Eighth Circle: Peed my pants while vomiting.

Yup.  More than once.  I may even admit to this being a reoccurring problem if I was an honest person.

Ninth Circle: Peed my pants while vomiting but wish I had pooped myself because at least that means I can go. 

When you are actually at a point where you are wishing you would just crap your pants ... you know its bad.  Need I say more?

I didn't think so.  

I am BatWonderWoman!

Attitude is everything. Sometimes I agree with that, sometimes I want to punt the people who say that squarely in the groin. Today, I'm going with it.

Home healthcare came out on Friday night. {It takes forever to edit and complete a post these days so they are up about a week after I write them.  This was Friday, September 26th in case you are trying to keep up.} We determined it will cost more than our mortgage per month (that was with the waver they offered, it would have been three times that) but it's not like I have all those OTHER options. Violently ill and wasting away was the only other "choice."  So "second mortgage" it is.  

So she came and I was in far worse shape than I thought I was. I thought I was maybe a bit dehydrated because I had a really good few days about three days ago where I was eating and drinking. I figured that had caught me up, and honestly I have been a LOT worse than I was at that moment so I wasn't too worried.  So when she was like "here pee on this so we can see how bad your ketones are" I was more concerned that she would think I had overreacted.

I scored the highest possible, four pluses, but this is like golf I guess and high scores make your nurse make faces at you and crank your IV up muttering things like "bolus" and "alarming."

Anyhoo, it's not such a bad process, the pump or the IV. I'm fairly confident I can handle both for now. Knock on wood.  Once the IV is done I will be more mobile and that will be nice. The IV cart they gave me is "disposable" in that I won't have to give it back. Translation: this thing could have been made stronger had it been built by second graders with Popsicle sticks and glue. 

My pump site is sore already, which stinks but isn't alarming. I may have to change it twice a day if it's a problem, which I'm not thrilled about but it's not unbearable by any means. Fingers crossed I just get used to it and the soreness fades.  Comparatively I feel great, I haven't vomited or dry heaved since the pump and IV were hooked up!  Knock on wood, again!  Nauseous, but not getting sick. Hopefully, with bated breath, my fingers are crossed. 

I will do way more detail later with pictures because I know I would have loved an explanatory blog post before I had this all done. For now, I leave you with just a couple pictures. First, my Pump itself, which I have named Robin. Because what else would you call a trusty, dependable, sidekick?

If that sucker is Robin that would make me Batman, right?

Kinda. Hee hee, I just thought it was fun to say.  In keeping with the superhero theme, which we are mildly obsessed with in this house, I couldn't help but notice that my IV bandaging looks a little like a critical accessory for another superhero...

If you squint just so, and really try hard to keep focusing on the positives it kinda sorta may look like Wonder Woman and her awesome Bracelets of Submission, no?

No?  Well I am running with it!

So Robin and Wonder Woman will be back for more later. For now I'm just going to hold still so I don't snag any tubes and enjoy not seeing bile first hand.