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What is Primary Immunodeficiency?

April was Primary Immunodeficiency Awareness Month, but I was so overwhelmed with crazy end-of-semester stuff and crazy body stuff that I totally goofed—I didn’t write a single PI awareness post on my blog about PIBut better late than never right? So let’s talk about it. What is a primary immunodeficiency and what is it not?

What PI is:

  • A hereditary/genetic defect in the immune system.
  • A defect occurring in one or more components of the immune system.
  • A blanket term to describe more than 350 rare, chronic disorders in which part of the immune system is missing or functioning improperly.
  • Lifelong.
  • Treatable, but not curable.

 

Basically a primary immunodeficiency is a problem with your immune system that you’re born with (although they can develop later in life and often aren’t diagnosed for many years either way).

 

What PI is not:

  • Contagious.
  • An autoimmune disorder.
  • Just a “bad” immune system.
  • Visible.
  • A defect in the immune system caused by something else—like AIDS or chemotherapy (it’s not “acquired”).

So when someone tells you they have PI don’t get all weird about it. They’re not contagious. Most likely, they’re not dying. Just be cool.

 

What having PI means:

  • Increased susceptibility to contagious illnesses.
  • Increased susceptibility to infection.
  • Infections that are recurring, chronic, difficult to clear up, severe, or caused by unusual organisms.
  • You don’t build immunity from a previous infection (whether viral or bacterial).
  • You’re a medical zebra—PI is rare, so it’s a “zebra” condition instead of a more common “horse” condition.

Let me explain—no there’s too much. Let me sum up. Having a primary immunodeficiency means you get sick a lot, because your immune system doesn’t work like it should. Since it’s a genetic/hereditary disorder, having PI usually means it either runs in your family, or you’re really lucky and your genes mutated…

To better understand PI it’s important to understand how the immune system is supposed to work

How it Works – The Immune System

There’s two basic parts to the immune system: the innate immune system and the adaptive immune system.

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The Innate immune system starts, like all of the cells that make up the immune system, in the bone marrow with a stem cell.  The several types of cells that make up the innate immune response (neutrophils, monocytes, natural killer (NK) cells, complement proteins) are ready to go straight to work once formed. They require no additional training to do their jobs.

In most cases of PI the innate immune response is a-okay. The problem occurs in the adaptive immune response.

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The Adaptive immune system also starts in the bone marrow. There they become either  B-cells or T-cells, the two major parts of the adaptive immune sytem. Then they are split up. T-cells go to the Thymus to finish developing and get trained for their jobs as Killer T-cells, Helper T-cells, or Regulatory T-cells—which all basically deal with the body’s adaptive response to foreign substances (ie viruses) and make sure they don’t attack the body’s own tissues (as in autoimmune conditions).

B-cells stay behind and get edumacated in the bone marrow. They mature into Plasma cells, which in turn can mature further into Memory B-cells. Plasma cells are responsible for producing antibodies, which are highly specialized proteins that fit “invaders” like a key in a lock. Memory B-cells remember the invaders that you’ve encountered before so a rapid response can be mounted if you encounter it again.

In a lot of primary immunodeficiencies the main problem is with the B-cells. They don’t mature like they’re supposed to. They don’t pay attention in bone marrow class or just skip it all together. So they don’t make antibodies like they should and they definitely don’t remember past infections. It’s like your adaptive immune army is made up of a bunch of cats—they just do whatever the heck they want, which is usually nothing. So bacteria and viruses waltz in again and again, and even if they’ve gotten in before your cells are perpetually unprepared.

Basically your B-cells look like this:

 

 

So you can see why they might not be super effective…

 

 

 

Subcutaneous Ig Infusions Part Two: Infusing

Ok so here’s a video (well three technically) of me doing my subq Ig infusion. Below the videos I’ve outlined the steps to doing an at-home infusion. Happy infusing!

-I’m not sure why I’m upside down in the freeze frame but once you play the video I stop hanging from the ceiling-

In case you don’t have the patience to watch my awkwardness for the whole time (like me), or you missed something because of my mumbling and/or poor camera skills, here are the basic steps to doing an Ig infusion:

  1. Set out your supplies (needle set, tubing, syringes, mini spike, alcohol prep pads, gauze pads, Ig meds, etc.) on your sterile drape and/or mat. (Having taken your meds out of the fridge at least a couple hours earlier so it can get to room temp)
  2. Take any premeds.
  3. Choose your sites and apply numbing cream, with a tegaderm over it to keep it in place.
  4. Pull the cap off your Ig bottles and sterilize each with an alcohol prep pad.
  5. Attach your mini spike to the syringe and take off its cap.
  6. Stab through the rubber cap of your Ig bottle with the mini spike and draw the medicine into the syringe by pulling down on the plunger.
  7. Attach one end of the rate tubing to the needle set.
  8. Remove the mini spike from the syringe and attach the other end of the rate tubing to the top of the syringe.
  9. Prep the tubing by pushing down on the syringe until the medicine reaches your needles.
  10. Remove the tegaderm covering your numbing cream.
  11. Mark area where numbing cream is BEFORE wiping it off with an alcohol pad.
  12. Sterilize site (with alcohol wipe or other sterilizing technique provided by your pharmacy)
  13. Pull needle flaps back and pinch together then remove needle cap.
  14. Pinch skin and fat where you’re going to stick- pulling it up.
  15. Stick the needle in smoothly and quickly, keeping it straight- don’t insert at an angle, just straight in. If you have a hard time sticking take three breaths and then stick on the third exhale.
  16. Secure needle with tegaderm.
  17. Repeat for all sites.
  18. Once all needles are placed pull back on the syringe to check for blood drawback.
  19. If no blood comes into tubes you’re ready to go- place syringe in pump and turn it on!
  20. If you get blood coming back into one of your tubes- clamp off that site, remove the needle and infuse in your remaining sites.
  21. Once your infusion is done turn off the pump and take the syringe out of it, then remove your needles- put a bandaid on the site if it bleeds or leaks.
  22. Cut your needles off the rest of the tubing and place them in your sharps container.
  23. You’re done!

Subcutaneous Ig Infusions Part 1: Supplies

This past week I did my monthly order of my Ig meds (Gamunex-c right now) and supplies. Since I’ve been doing this once a month for nearly five years now, it is totally automatic. I know all the names of the supplies, the amounts I need, the sizes I need, etc. But as I was ordering this week I had a flashback moment as I was mechanically naming off the supplies I need in this month’s shipment to when I first started out–it was the weirdest thing learning all the special names for squares of plastic tape and the numbering of tube sizes and needle sizes. And I also remember it was a little overwhelming at first. So for today’s post I’m going to go over the basic supplies for a Subq Ig infusion.

Typical Subq Supplies List:

  • Premeds – Most people take premeds to help limit side effects from the infusion. The most common premeds are Benadryl and Tylenol. I use 25mg of Benadryl and 650mg of Tylenol.
    • Tylenol
    • Benadryl
  • Epipen – If you’re doing an infusion at home, whether it is IV or Subq, you have to have an epipen on hand in case of a severe reaction. When you’re being taught to do your home infusions, you will also be taught how to use the epipen.

  • Tegaderm – These clear, stretchy tape-like things are used to keep needles in place during the infusion.

  • Medical tape – You may have a variety of uses for the tape. I use some at the bottom of the tegaderm as extra help to keep the needle in place, even if the tubing gets caught on something.

  • Numbing cream – You put numbing cream on 20-60 minutes before your infusion in the places you are going to stick the needles. It helps it not to sting so much when the needle goes in.

  • Bandaids – I figured you wouldn’t need a picture. Often you’ll need to put a bandaid on each of your sites for a while after you’ve pulled the needles out at the end of the infusion.
  • Tubing – tubing, or rate tubing, controls the speed at which the medicine is pushed into your sites. Different numbers on the tubing correspond to either faster or slower rates. Right now I use F120 tubing, which is a pretty slow rate. When I was on Gammagard I used F900 tubing, which is much faster. It’s all a bit confusing at first but your nurse and specialty pharmacy will help you figure out which rate tubing is best for you.

  • Subcutaneous needle set – For a Subq infusion you can have anywhere from 1-6 or more needles. How many needles you need will depend on the medicine you’re on, the dosage, etc. I think it is pretty typical to start with a 4 needle set and increase or decrease depending on how your body handles it. In addition to the number of needles, there are also different size needles in length and gage (width). The typical length is 9mm. 6mm is for kids or people with very little body fat. 12mm can be used if you are having troubles with leaking. The typical gage of a Subq needle for Ig infusions is 27. Your doctor will typically order the size and gage they think best originally and then you can work with your specialty pharmacy to adjust as needed.

  • Syringes – These are what hold your medicine during the infusion. In setting up the infusion you draw your med from the bottle into one or more syringes, then you hook up the tubing to the syringe and put the syringe in the pump!
  • Mini spikes – These are what you use to draw your med from the bottle to the syringe(s).

  • Gauze pads – These have many uses, but they’re kinda like the tape or bandaids–pretty self explanatory.

  • Alcohol wipes – Also called alcohol prep pads, you use these to sanitize your skin before you stick the needle. You can also use them on surfaces to sanitize– like if you have a plastic mat instead of a sterile drape to set your stuff up on, you’d need to sanitize it with the alcohol wipes before each infusion.

  • Sterile drapes – These provide a sanitary surface for you to set up all your infusion stuff on.

  • Infusion pump – Your pump pushes the medicine into your tubing and through your needles into you! Seriously be grateful for your pump because pushing the syringe yourself for hours at a time would be super tiring.

  • Sharps container — At the end of your infusion you put your used needles in the sharps container. When your sharps container is full your specialty pharmacy usually has a prepaid box you ship it to their disposal facilities in.

Ok so I think I covered all the basic supplies you’ll be handling with your Subq infusions, but if you’re still confused no worries! This is just part 1 remember? I’ll have further posts about Subq infusions in the future as well as a video showing you how I do my infusion 😉 In the meantime, if you have ANY questions about Ig infusions please feel free to ask me! Comment, shoot me an email- whatever. I’d love to help you out if I can. You’re not alone!

The Chronic Illness New Year

The start of a new year is great right? You watch the ball drop, raise a glass, make resolutions–all that good stuff. January first comes around each year and you feel a sense of a fresh start. You look back on the previous year and see how far you’ve come; you look forward into the new year that holds all sorts of possibilities. Great. But for those of us who deal with chronic, significant health issues the new year means something else as well.

It’s something we dread.

It starts not on January 1, but with the first major medical necessity of the new year.

For me, and my PI homies out there that is generally our first infusion shipment of the year.

You dial the specialty pharmacy number with a knot in your stomach, you try to sound normal as you go through all the normal shipment info, then the moment arrives– with trembling hand you hold the phone to your ear and wait for the bomb to drop. Your copay amount.

You see, the new year means that the deductible you met last year is all gone and you have a fresh pile of money you have to toss into the insurance pit before you’ll get decent coverage.

It also means that your insurance company can make all sorts of changes that come into effect with the new year–maybe they’ll move your infusion medication to a different tier on their covered medications meaning they cover less of it, maybe they’ll increase the cost of your medication, maybe they’ll make you switch to a whole different one because they no longer cover the one you’re on… The terrifying possibilities are nearly endless.

This past week the Chronic Illness New Year hit me and my family hard. I went to order my months supply of Gamunex-c and infusion supplies to be met with the wonderful surprise of my copay increasing from $250 (but actually zero because our deductible had been met with copay assistance from the wonderful folks at Gammagard before I was forced to switch) to $600.

For those of you who aren’t familiar with Ig infusions, this may seem like an impossible amount (and really it should be), but the sad fact is that this is a problem continually faced by those who need Ig infusions and their families.

Luckily most Ig companies provide copay assistance to those who use their product and need help paying for it (which is basically everybody). After my wonderful doc and I jumped through several hoops, it looks like I will be able to get copay assistance starting next month from my new buds at Gamunex. But even with assistance many families still have to shell out a considerable amount before the year’s deductible is met.

As I’m writing this I’m thinking I really, really wish that I didn’t have to know so much about health insurance already. But I’m also thinking despite the hoops, the bills, the stress, and all the wonders of the Chronic Illness New Year, I’m just so grateful to be able to have the Ig infusions. I’m so grateful that my immunodeficiency was able to be diagnosed and there is this treatment. And it does help. A lot.

So Happy Chronic Illness New Year! May the odds be ever in your favor…

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!