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How to Hydrate for Your Ig Infusion

Hydration is key for Ig infusions, whether you’re doing IVIG of SCIG. I’ve learned this the hard way over the years. Once, I didn’t hydrate well enough before IVIG and my blood pressure plummeted so badly in response to the medicine that I almost ended up going for a ride in an ambulance. Now I do Subq infusions and while I don’t have the same problems with blood pressure taking a vacation, if I don’t hydrate extremely well before and during the infusion I get a serious migraine. So let’s compare some of the top hydration drinks with infusion prep in mind.

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After a couple years of experimentation my favorite is Low Calorie Gatorade. I like Sugar Free Powerade, but it doesn’t taste as good and the artificial sweetener tends to give me a headache. Pedialyte is my second go-to, but it definitely doesn’t taste as good as Gatorade. Each person is different so you’ll have to do some of your own experimenting. Happy hydrating!

A Day in the Life of this Zebra

Something kind of surprising that I’ve had several people tell me since I started this blog is that it has been “eye opening.” I guess that’s strange to me because, well, it’s nothing new for me. I sometimes forget that I’m a zebra living in a world of horses; when I hear other students talking about their Friday night plans I automatically think “Sillys. They’re forgetting that it’s infusion night tonight;” when I spend all of my breaks bouncing between doctors appointments, I forget that, that’s not the purpose of school breaks for everyone. Some people can’t imagine what it is like to have a malfunctioning immune system or a head that is always hurting–I can’t imagine what life would be like without them. So whether you’re a horse wondering how a zebra spends her days, or a zebra wondering if you’re the only one, here’s a day in the life of this zebra. (This is a Monday from a couple of weeks ago, but still overall a pretty good representation of an average day)

Monday 8:30 am

I wake up even though my first class isn’t til 10:00. I don’t like having to rush in the morning.

I start my day with cranberry juice and emergen-c. Mostly to prevent UTIs but also just as an immune booster. Then I get dressed (with thermals underneath my clothes because I’m already that cold), etc. and have breakfast.

9:50 am

I’m off to Fundamentals of Creative Writing. Today we are workshoping our poem #2 for our poetry portfolio. Maybe I’ll let you guys see it once I’ve revised.

11:00 am

Creative Writing is over. Normally I’d be heading home but instead I have to go make up the French test I missed on Friday because I had a bad migraine.

12:00 pm

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Home again home again. If niece number two isn’t already asleep then I’ll probably sitdown to do a nap time with her. Nap time with this aunty means we snuggle on the couch watching simple songs on YouTube until she falls asleep. Then I either do homework or also fall asleep.

1:00 pm

Nap time is over. I’ll grab a quick lunch and then head off to French.

1:30 pm

French. We’re starting a new chapter today. I’ll also find out how I did on the test. I hope I did ok–it was hard studying this weekend with a migraine/migraine hangover. (I missed one question, but all things considered I’ll take that quite happily).

2:30 pm

French is fini and now I’m off to Approaches to Literature. We just finished reading the Tempest. Now I think we will be writing a paper about it. Woot woot.

3:30 pm

Done with classes for the day! I head home and change into sweatpants and a hoodie. I sit down to steam and watch Netflix for a bit. Probably the Great British Baking Show since they just put up a new season. Steaming helps prevent sinus infections and also seems to help ease the aching of my head/face.

4:15 pm

Now that I’ve taken a break it’s time to get down to business, as it were. Let’s see what should I start with? Probably the essay for WWI Lit that’s due tomorrow that I haven’t started…

5:00 pm

Been working for 45 minutes, made decent progress. I deserve a break. So I go out to the living room to see the girlies for a minute.

5:15 pm

Ok back to work. I can do this. I want to finish the rough draft so I don’t have that much to do tomorrow, though it’s not due til midnight.

7:00 pm

Whether or not the rough draft is finished, I can’t think in cohesive sentences anymore. Time for a dinner break.

7:30 pm

For niece number one it’s time for a pre-bedtime breakdown. For me it’s time to choose which is more important– my French hw or finishing my WWI Lit reading for tomorrow. I think I’ll go for the reading. Takes less brain power and by this point my head is hurting at least medium from looking at a screen for so long writing the essay. So I get comfy and dive into All Quiet on the Western Front.

8:15-8:30ish pm

Either I’m finished with the reading or my brain is finished for the day–either way it’s time for some healthy hot cocoa (raw cocoa powder, honey, cinnamon, turmeric, pink salt and a touch of grass fed butter) and an episode of Stranger Things. My sibs have already finished the new season but they’re watching it again with me so I can get caught up. I only have two episodes left!

9:15ish pm

The first episode is over. Now I have to use all my willpower to tear myself away in the 15 seconds before Netflix starts the next one and I’m committed to another 45 minutes. Time to hop in the shower.

9:45ish pm

Shower done. Now time to clean out my sinuses with the neti pot thing and do my nightly stretching. As you can see I spend a decent amount of time each day just trying to prevent sinus infections, which are my bane.

10:15 pm

Take melatonin. Read. Pray. Brush teeth, etc. Fill up humidifier for the night. Set alarm for tomorrow. Take cough medicine. Rub Vicks vapor rub on chest (been doing the last two ever since I got whooping cough in Sept). Lights out by 11:30.

 

How to Help a Loved One with Whooping Cough (As Told by a Two-Year-Old)

I’ve been coughing for about six weeks now and in that time my two year old niece (who I live with) has developed a fool-proof treatment plan for Aunty’s whooping cough.

Treatment 1: Back PatsIMG_0027

The first and most important part of treating a loved one’s whooping cough is to always be on hand to pat them on the back while they cough. This means constant vigilance–you must always be listening and prepared to run as fast as you can to them whenever you hear coughing. Additionally, you must tailor the intensity of your back pats to the intensity of their coughing– if they are only coughing a little than a gentle, slow pat will do, but if they are coughing very hard you will need to hit their back much faster and really throw your weight into each one. Finally, if they are somewhere you cannot reach them, say in the bathroom, and you hear them coughing it is perfectly suitable to freak out and expect something horrible will happen because you are unable to pat their back as they cough.

Treatment 2: Keep Vomit Bags on Hand

As I have said before, hospital vomit bags have been super handy for catching whatever comes up during a coughing fit. Your role as a loved one then, is to always make sure their bag is right by them. If they leave it in their room and are watching tv in the living room, you must go and get it for them. If they leave it on the floor and they are on the couch, you must hand it to them. It is also important to note that in order to make them feel less gross about carrying around a vomit bag, you should probably come up with another name for it such as “yucky baba.”

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A yucky baba

 

Treatment 3: Bear Hugs

IMG_0026This past Thursday I had the worst coughing fit I’ve had yet. I guess good old pertussis wanted to prove it still had some power of misery over me. To make it worse, the whole choking, gasping, vomiting repeatedly thing happened right in front of my niece. She was super worried about me and didn’t understand why her mom kept taking her out of the room. As I sat on the floor catching my breath afterwards she escaped from her mom and came barreling into my room to give me a high-velocity bear hug. And let me tell you, being love-tackled by thirty compact pounds of adorable did make me feel rather better.

Treatment 4: Share your Toys

Later that same day I was sitting on my bed watching Downton Abbey–still recovering from that horrible fit– when my niece broke into my room again. She walked up to my bed matter-of-factly holding her little wooden camel in one hand and her little wooden rooster… between her teeth. She placed first the camel, then the slobbery rooster into my hand and climbed up to sit on the bed with me. So you see the key here is 1) share your toys, 2) the more slobbery they are the more love bestowed, and 3) just be there for them.

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Well there you have it, four ways you can take care of a loved one with whooping cough!ms-F7fOC7

It’ll Pass

One of my favorite book series is Anne of Green Gables. In one of the later books after Anne is married she befriends the old sailor Captain Jim that runs the local lighthouse. Captain Jim is a lovably simple fella, but sometimes he says things deeply profound. One of those quotes, which I am sure I will butcher, has stuck with me and always comes to mind on particularly rough days. He said something along the lines of “Even on those days when I’m hurtin real bad I feel sorta cheerful cus I know sooner or later it’ll pass.”

Sooner or later it’ll pass.

Captain Jim would know–he weathered plenty of storms in his time as a sailor.

So far in my life I’ve always found this to be true. All the pain I’ve felt–migraines, broken bones, surgeries, sprains, strains, infections, gallbladder attacks, unbearable cramps, gastroparesis, depression–no matter what the pain or the cause of it, always it has passed.

Sometimes in the moment of extreme pain you can’t imagine it ever will. It seems it will last forever–that there never has been and never will be anything except this all-encompassing pain. Hundreds of times I’ve felt like I couldn’t make it til it passed, I couldn’t handle one more second of pain. Somehow I always did. Always do. And then eventually it always eases. Always passes.

I’ve been thinking about that with this cough. I’ve already been sick for more than a month. It seems so long and yet it could last for much longer still.

At the absolute worst point–when the coughing fits came about 40-50 times a day and each one left me gasping, choking, crying and each cough was agony to my ribs–I felt then I couldn’t handle it. Each time I felt like I couldn’t take even one more coughing fit. I wondered how I was supposed to keep going with my classes–or at all really. Each of the jabillion times I woke up in the night to cough and choke and choke and cough one thought kept going through my mind. This Sucks.

But each time I handled just one more coughing fit. One more day. One more night.

And then this past week something awesome happened. All the sudden it started to ease. Coughing fits were less intense. I stopped needing my handy vomit bags so much. I felt like eating more (something about regularly coughing up part of whatever you last ate makes it not very appealing…). Then coughing fits came less frequently. Somehow by the middle of the week I could go an hour, or two even without a single fit! Suddenly I could go to all of my classes and it was hard, but doable. Without even realizing it at first I had made it through the worst and it started to ease.

Believe it or not, it looks like even whooping cough passes. And it might even do so before the hundred day mark!

So head up, feet forward and be a little cheerful, cus sooner or later it’ll pass.

A Baby Disease Busted My Rib

Ok so remember how I said I had a bad case of bronchitis and then disappeared a couple weeks ago? Well it turns out I did not have bronchitis. I do almost definitely have whooping cough.

Technically the swab results from my seven hour stop off at the ER this past Wednesday

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A rare action shot of an ER patient hoping that the footsteps she hears is someone coming to tell her something useful. Also yes I’m doing hw. French.

haven’t come back yet, but my symptoms are dead on AND there has been a verified case of whooping cough at my school. Add to that my incompetent immune system that doesn’t gain immunity from vacccines annndddd. Boom. You’ve got a twenty-two-year-old with a full-blown case of whooping cough.

From the very first week of school there’s been a bad “cold” going around. I’m thinking that really, most people have had a watered-down case of whooping cough. But luckily for me, other zebras and new-borns, you don’t need to have a full case of whooping cough to give the full-blown thing to someone else.

So what does a full-blown case of whooping cough look like in an adult?

Well first you get a “cold.” It’s really not even that bad of a cold. Then after about a week you start getting a nagging cough. That gets worse for a couple weeks until you find yourself having anywhere from 15-50 coughing fits a day that are so intense you throw up and gasp for air as seemingly infinite amounts of sticky mucus obscure your airways. (In my case the very worst of the attacks only lasted for a little over a week.) Then things get just a little better. Your coughing fits are less frequent. You aren’t choking, gasping and throwing up quite so much when you cough. You stop feeling like you’re going to black out with each coughing fit. That’s where I’m at now. Apparently this bit can last anywhere from 2-10 weeks.

Oh yeah and I forgot to mention–you might cough so hard that you break, bruise or dislocate a rib or so. It freakin hurts, but don’t worry there’s not much they can do about it.

That’s maybe the worst thing about whooping cough–there’s almost nothing that can be done. If caught early enough a course of antibiotics can lessen the severity of the case, but otherwise you basically just have to ride it out.

In China whooping cough is known as the 100 days cough, because it often lasts for three months or longer. So I pulled out my calendar and counted 100 days from the day I got sick. According to Chinese tradition I should be better by December 19th, give or take a few days. I have no idea why I thought that would help. I guess I can start a count down or something. At this point I’m at least a month in so… only 70 more days to go!

This is definitely not how I wanted to start off the semester. Or finish it… But it is what it is. It’s not going to make for the smoothest semester, that’s for sure, but I’ll do my best. And that includes making a sincere effort not to vomit or pass out in class 😉

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We swiped a bunch of the ER vomit bags so we could feel like our trip hadn’t been a total waste. I carry one around everywhere to catch whatever comes up during a coughing fit.

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Doing the nebulizer. This thing is almost as old as I am and it’s still kickin! We call it the Darth Vader machine.

I Earned My Stripes with a New Zebra Record (Or Two)

Friday at , at long last, I got my Ig meds and was able to do an infusion. It had been exactly three weeks since my last infusion, beating out my previous record of time-without-an-infusion (since I’ve started infusions that is) by several days. It’s been a long three weeks.

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Had to celebrate the end of the nightmare with some Fro Yo!

Amazingly, I did not get seriously sick or get an infection this time. My previous record of two-and-a-half weeks without an infusion got me a horrible gi infection and a partially paralyzed stomach. So my family and I had good reason to be a bit worried this time, but even with classes starting and sickness already going around campus I managed to avoid any great catastrophe…

Friday night I actually set another record–the longest it has ever taken me to do a sub-q infusion. It was my first infusion of Gamunex-C (I had been on Gammagard, Aetna made me switch).

At the historic event Thursday of at last being able to set up my shipment, the nurse informed me that the rate tubing I’ve been using with Gammagard is off-label for Gamunex and so I have to use a different tubing and discard my old ones (I got to be honest this is very unlikely to happen). If you’re wondering what the difference between F900 rate tubing and 120 rate tubing is, it’s just a difference of about six inches and 2 hours. Normally I infuse (or did infuse) two 50ml syringes and each syringe takes about 30 minutes. Add in a short break in between syringes to discourage leaking and my entire infusion took 1.5 hours (not counting set up). Friday it took 1.5 hours PER SYRINGE. If you’re keeping up with my extremely complicated math, you’ll know that means it took 3 hours to infuse Friday!

Now I know what you’re thinking–shouldn’t I just be grateful to have anything to infuse? Well I am. I super duper am. But nonetheless I feel it necessary to be true to human nature and find SOMETHING to whine about, no matter how small.

How long it took is really my only complaint with the new med. Well that and I had the exact same side effects from Gamunex that I had when I infused Gammagard at twice the rate. Otherwise the only thing wrong with Gamunex-C is that it is a change–a change from a med I was very happy on and a routine I was accustomed to. But oh well. Life goes on.

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The new med!

What To Do When You Can’t Get Your Ig Meds

I apologize for not posting last week. The beginning of classes combined with Aetna drama has made for some significant insanity.

As of Friday I’ve gone two weeks without an infusion. This is not the first time that insurance problems have caused a gap in my Ig treatment. Actually it is the third time in 3.5 years of treatment, so if my experience is any indication, it’s hardly a rare occurrence. So what do you do when you run into insurance woes and experience a gap in treatment?

1) You freak out.
tumblr_neiak7IgW71svfqeco1_500If you don’t have PI you can’t fully understand how terrifying it is to go without Ig treatment, but let me try to help you: imagine that everyone is born with a car, but you were only born with half of one. Most of the time you have a supplemental second half that, though not as good as a regular car, allows your car to function. Now let’s say your car insurance hasn’t re-approved your supplemental second half, so it is taken away temporarily. Do you know what half a car is good for? Nothing. That’s what. It can’t drive. It can’t even keep out the rain. Right now I’m driving in half a car (so by “driving” I mean just sitting there hopelessly. But I get lost in the metaphor).

 

2) You prepare for battle.IMG_0002

Ok freaking out time is over. Now it’s time to get down to business. Until you receive your infusion you will be fighting a war of insurmountable odds on two fronts: on the Western Front you will need to pull out all the stops to defend against viral and bacterial invaders–AKA you’ll be trying not to get sick. So dig some trenches and fill them with hand sanitizer, germicide wipes and Vitamin C. On the Eastern Front you’ll be on the offensive, trying to infiltrate the insurance company and get access to your Ig meds before the germs overwhelm your defenses. As it is only a matter of time before your weakened immune system is smushed, your offensive efforts are especially important.IMG_0001

 

3) You harass your insurance company into submission.

This is your offensive plan: you call them everyday, multiple times a day. You ferry messages between your insurance adversaries and your doctor’s office, hoping you’ll be able to find a resolution. You write down the names of people you’ve spoken to so you don’t get lost in the vast sea of insurance employees playing hot-potato and phone-tag with you. Yes, your ears will bleed from the grating, static-filled hold-music you spend minutes and hours and days listening to. Yes, your brain will be battered by the ever-changing information you are told ping-ponging around in your head. Yes, you will burn with frustration and anger as hour after hour of effort turns fruitless. But when you sit once more in front of the TV with your Ig juice flowing through the needles in your legs or tummy it will all have been worth it.IMG_0003

 

4) You breathe and hold onto the knowledge that this is just a temporary setback.IMG_0005

Every time this happens to me each day without Ig coverage seems endless, the insurance maze seems unsolvable and the sickness that results from lack of treatment feels as if it will go on forever. But every time the lack of coverage comes to an end, the insurance puzzle is solved, treatment resumes and health eventually returns. That being said it is still perfectly acceptable to break some stuff, punch a wall and/or cower in an extremely sanitized corner holding a can of disinfectant spray–that my friends is an inescapable part of the process.IMG_0004

 

5) You eventually emerge bloodied but victorious.IMG_0006

Congratulations. By now you probably have caught a virus or developed an infection, but at last you get to resume treatment. Your insurance woes are behind you for at least another 6-12 months. Now you just have to deal with the all the stuff you normally do, plus the physical and psychological destruction caused by your war with the insurance company. Feel free to melt into a puddle of relief that the nightmare is, for now at least, over.

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Starting off School PI Style

Monday morning I got my allergy shot, put my allergy serum in a cooler and headed to Buena Vista, VA. Well really there was a bit more to it than that. Like a whole ton of procrastination that led to a whole ton of last minute packing and general scrambling. But in the end I made it and so far it doesn’t appear that I forgot anything super duper important. So we’ll pronounce that a win.

Tuesday morning I called Aetna Specialty Pharmacy to set up my monthly shipment of infusion meds and supplies. On the bright side, I did reach an actual person relatively quickly–something I never quite achieved when I called last week. That’s where the bright side ends though I’m afraid. From there on it was all bad news.

Bad News 1) Your doctor hasn’t submitted the necessary forms to renew authorization on your infusions so your authorization has expired and you can’t get your stuff until that is fixed. Unless you happen to have a few thousand dollars lying around to pay for the whole thing yourself… (I do not)

Bad News 2) Aetna hates you and the medicine you are on because you are both too expensive. So you have to switch medicines. Also you have only one option as to what to switch to. Basically this is a medical dictatorship. Be grateful that it is illegal for Aetna to get rid of you like it has your poor Gammagard. Just in case you should probably be on the look out for assassins hiding behind piles of medical forms and bills.

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When I think of dictators…

 

Bad News 2.5) Bonus: your copay assistance is currently coming from the company that makes Gammagard so that goes bye bye too. Your new medicine also has copay assistance, but there’s no way you’ll be able to get it for this month because the application process takes several weeks and your infusion is in three days (if you even get your shipment by then, which is somewhat doubtful). So basically you’re screwed. But just for this month.

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Don’t worry though, this week isn’t all dictatorial doom and gloom. There is always some rebellious patches of sunshine. Like:

  1. I made it to school again against all odds! (namely a killer migraine Monday and a crazy amount of traffic)
  2. When I was unpacking I thought that I had forgotten one of the containers with my infusion supplies in it–I did not! All infusion supplies made it safely to school with me.
  3. I managed to muscle my way in to the family practice clinic in town this week so I can start getting my allergy shots there next week despite the influx of students trying to get last-minute physicals, etc.
  4. Did I mention I’m at school again? Yay so excited!
  5. I have spent the last two days under a figurative (and sometimes literal) pile of allthree of my adorable nieces and I get to spend the whole year with them!

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    Like this but with little girls

  6. I had a dream that when my new med came (Gammunex-c) it came with a box of awesome stuff like Minion-shaped Benadryl and Harry Potter bandaids. So I feel better about having to switch and fully expect my dream to come true. (But also in the realm of reality I talked to people in my CVID Facebook group and everyone on Gammunex-c seems to be happy with it)
  7. I got a bunch of my school books and I’m SO EXCITED to read them. (Remember I’m and english major so I get to read good stuff most of the time)
  8. Last month my IG levels were checked and they were really good, so even if my infusion is late I should still be in pretty good shape.

I could go on indefinitely, but I’ll control myself. The point is this week has been crazy, stressful and hard, but also awesome.

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Real

Here’s a poem I wrote a while ago. I’m no poet, that’s for sure, but I think the message is pretty clear despite my iambic inadequacy.

P.S. the line with “gall” is a gallbladder joke–I wrote this just before gb surgery 😉

Make of me what you will,

Administer another pill,

Promise this one to bring relief,

Another lie to cross your teeth.

 

Cut me open, take it all-

It’s yours to have with no gall.

I’m in pieces anyway,

Slowly crumbling day by day.

 

Put me under, let me sleep,

I’ve been under-in too deep

For an age or five or ten,

Encased in my fleshy pen.

 

Look at me, rambling on,

Screeching out my sorry song,

Bitterly biting in the ear,

A tale we try not to hear.

 

An illness real, with no romance,

Waste of time at a glance,

No one wants to really see-

No one wants reality.

 

Instead we look to Hollywood,

Make it shining, show us could!

Present it as always, everything,

Everything always glistening!

 

My song not so sweet to the taste?

Suck it up, give me a break!

Beauty is in everything,

But not as a gory romance teen.

 

Don’t twist life in a knot,

Making it something that it’s not.

Sorry are the eyes can’t bear to see,

Real pain, real beauty.

 

 

 

 

 

Good News Annie, You Can Stay

Annie is a cat, not a person. It didn’t actually occur to me to ask them to test for an allergy to other people. I’ll have to look into that some time. It seems likely, especially an allergy to people who *gasp* don’t like Harry Potter or chocolate or other extremely important things.

Just in case that introductory paragraph didn’t make things crystal clear–I had skin allergy testing done Tuesday. Technically, redone, since I was also tested my senior year of high school. The first time everything was negative. Initially it was a let down, but it turned out to be a good thing because it enabled us to do further immune system testing…which led to my PI diagnosis.

This summer I reluctantly asked Dr. C if we could repeat the skin testing. I was kind of embarrassed to even ask, since I’ve had so much allergy testing done over the years and it’s almost always been negative. But my recurrent sinus infections and everything-resistant nasal congestion this year made me desperate enough to venture once again down that allergy avenue of insanity–doing the same tests over and over again and expecting a different result.

Well I didn’t really expect a different result. I fully expected it all to be negative. I expected this because I secretly hoped that something would be positive; I’ve found it best in the medical world to expect the exact opposite of what you hope for, so that it’s a little less demoralizing when your hopes once again fail to be realized. That may seem rather pessimistic, but it doesn’t really matter–I can never fully manage it anyways. No matter how many times I’ve been disappointed, it’s awful hard not to hope.

So when the nurse exclaimed, “Dang. One of them is trying to start reacting already!” before she walked out of the room I fought it. It probably will go back down before the fifteen minutes are up, I thought. That itching is probably just the histamine control. No, bad hope! Get back where you belong–outside of the Dr.’s office!

Hope must be a cat because it never listens. Even as I sat there freezing in my little paper gown and reading about poor Edmond Dantès and all his hopes being destroyed I couldn’t control it–hope settled in on my chest purring and kneading me repeatedly with its sharp, little claws. What if? it purred to me. What if?

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Well hope you little rebel, you were right this time. I reacted to one thing–the Aspergillus Mold. And really, I might add, I did a pretty thorough job of it.

The bad news is that Aspergillus Mold is a primarily outdoor mold that is just about everywhere all the time in Virginia. The good news is that I get to try allergy shots for it! Naturally, I expect that the allergy shots won’t help that much…because I secretly hope that they will help both my sinus infections and migraines a lot.

To prove to myself how little stock I was putting in the allergy shots, I kept my ENT appointment for yesterday. Unfortunately that kind of backfired because after hearing about the results of the allergy testing the ENT told me I definitely needed to do the allergy shots and then patted himself on the back for a job well done. So it was a bit of a wasted appointment, except perhaps, for the ENT since he got to feel very accomplished over doing absolutely nothing.