Skip to content

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 Can an Illness be Invisible?

“Invisible illness” is a term you see thrown about a lot these days, but have you ever wondered exactly what it means–how an illness can be “invisible?” Well if so, good. You’re in the right place, cuz I’m about to explain. Or try to at least.

See these two good-looking sisters? Pretend for a moment you don’t know which one is me–just by looking at the picture can you tell which sister has an immunodeficiency? Migraines? Anxiety?

No. You can’t. Let’s be honest–you can’t even tell which of us is older (me people! Me. The one with bad vision. Everyone always thinks she is older). That’s what an invisible illness is–a condition that can’t be identified by just looking; it’s the pain that no one sees, the panic that no one notices, the everyday struggle that goes unrecognized, the illness that goes unseen, unrealized, sometimes unbelieved–that is what is meant by “invisible.”

Really almost all chronic illnesses fall under this category because so little of what goes on with our bodies is visible to the naked eye. And yes, this is good because I think most people, sick or not, prefer not to stick out. But it’s also bad. Why?

Well let’s go back to me as an example. Except for my inability to smile normally for pictures, I look like a pretty average college student (I think so at least). So people who don’t know me, who say, see me in a morning class but not in an afternoon one, would assume I’m just skipping that second class. And that, in turn, would change the way they look at me. I know this from high school; most kids I had classes with the last couple years of high school thought I just skipped class all the time. So did some of the teachers. Because they couldn’t see what was wrong with me, and because at the time, I didn’t even know exactly what was wrong with me, they didn’t believe that a teenager could really be sick that much. Therefore I must just be a lazy, liar skipping class and then making up tales to cover my butt.

We humans have a hard time believing in what we cannot see. It’s silly, but it is definitely a thing. When applied to invisible illness, it causes people to say stuff like “but you don’t look sick,” in turn causing an increased co-morbidity of chronic illness and homicidal impulses (kidding). But hearing stuff like “but you don’t look sick” or “but you’re too young to have all these problems” does get old real fast. Not that I would like people to come up to me and say, “wow you look awful!” That’s not what I’m getting at here. What I’m getting at is that all people with invisible illnesses want is for you to believe them. Believe when they say they’re in pain, they’re in pain–even if you can’t see it. Believe when they say they’re tired, it’s more than just being a little sleepy. Believe them when they say they’d love to, but they’re not feeling up to it. Just believe and be understanding. Those two actions alone can significantly lift the burden of an invisible illness.

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.

Screen Shot 2017-12-09 at 5.49.36 PM

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!

Trolls, Molds and Woman Colds

Well that title is fairly self-explanatory I think. So see you next week.

Just yankin your chain.

This week can be somewhat appropriately represented by these three nouns.

First, Trolls. 

IMG_0010

You know what hugs are great for? Sharing germs. Way to go Poppy.

My oldest niece is currently going through a Trolls phase. At least twice a day she asks for “Everybody oh oh oh.” Since she is not quite two, I can understand why the bright, song-filled movie is appealing to her. In fact, the adults of the house have agreed that the movie was either designed by a think-tank of five-year-olds, or the people who made it were crazy high the whole time. Either way I think we are all excited for this phase to be over.

Second, Molds.

I’ve been getting allergy shots for my new-found mold allergy for over a month now. I do feel that they are already starting to help–I have been sinus-infection-free since July despite the very wet September we are having (molds love the rain). The only downside to the shots is that they tend to trigger migraines. In the long run this may be a good thing, as that suggests that mold is a big migraine trigger for me right now; once I get the allergy under control my migraines will likely improve. For right now though, it does make shot day a tad tricky.

Third, Woman Colds.

The Woman Cold is a term I have decided on to describe a phenomenon as real and as ancient as The Man Cold. The Woman Cold, like it’s masculine counterpart, can of course be experienced by either sex. Its name is simply an acknowledgement that the majority of its sufferers are women.

The Woman Cold refers to a cold/illness that the sufferer chooses to ignore and remain in

IMG_0013.GIF

Ron with his Woman Cold

denial about until something drastic happens. The owner of The Woman Cold will continue with life as normal, steadfastly insisting that “it’s not that bad” until they either recover or get much, much sicker.

This week I had a Woman Cold. There’s been a cold going around campus and I finally succumbed. Really, as far as the cold itself goes, it was nothing to write home about. The cold was not the primary problem though–the whole week my chest was getting tighter, I was coughing a little, then a lot, then A LOT.

Just part of the little, trifling cold I was sure. It will pass.

Eh. Wrong.

Friday morning I came back from my morning class. I set my backpack on the floor of my room. I bent over to retrieve my phone from its depths. Suddenly I was seized by an intense coughing fit that led me to discover this equation:

Intense coughing + bent over Miranda = throw up on my poor backpack.

Oops.

Now I really, really didn’t want to throw up on someone else’s backpack, so I finally accepted that it was time to stay home from class. My Woman Cold had sneakily metamorphosized into bronchitis.

Actually, as I have already mentioned, this development wasn’t sneaky at all, but as a fundamental part of The Woman Cold is denial, virtually every outcome except full recovery comes as a surprise to the sufferer.

IMG_0012

And don’t think for a second I’m saying that The Woman Cold is a good thing–if many of my professors and classmates hadn’t come down with this particular branch of the cold then I probably wouldn’t have gotten it. They were in denial, they came to class sick, they got other people sick and that ultimately led to me getting bronchitis. The Woman Cold is just as annoying and foolish as the man one. Well almost.

 

 

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.

IMG_0333

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.

IMG_0329

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.

IMG_0007

 

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.

 

 

 

 

 

10 Things Not to Say to a Zebra

1) You Should Have More Faithms-h4t1vN

  • By telling me that you are exercising too much faith that I will not smack you in the face. Faith isn’t a fix-all substance. If having faith meant you never had any problems then there would be no need for you to have faith.

 

2) You Should Get More Exercise

  • You should exercise your brain more–out of the two of us, who do you think knows better what my body can handle and what is appropriate for it?

 

3) A Couple Germs Aren’t Gunna Kill You

ms-Vo5bZO

  • Probably they won’t, you’re right. But they have a very good chance of making me very sick. And if your “harmless” germs make me very sick then they might just end up killing you, albeit in a roundabout way.

 

4) So When Are You Going To Be Better?

  • Please visit a dictionary entry for the word “chronic.” You also might want to stop by the term “genetic” and perhaps try a google search for “how to have a filter.”

 

5) You Should Try *Insert Diet Here* I’ve Heard It Heals Every Health Problem Ever

  • No. Just. No. I can’t do this with you right now–ever.ms-oyjwvd

 

6) You Need To Gain Some Weightms-TfNOJd

  • Would if I could, next. But also, did you know that it’s possible to be insensitive about someone’s weight even if they’re not fat?

 

7) I Could Never Deal With That

  • I can often never deal with a paper or other school assignment…until the night before it’s due and then I have no choice, and somehow I always manage to face what I couldn’t the day before. Either I face it, or I fail. And I really can’t face failing.

 

8) You Should Just Try Getting Up Earlierms-bLCjjx

  • For someone who has chronic illness, getting more tired does not automatically equate to getting more/better sleep. It does often lead, however, to getting sick or having a flare.

 

9) You Should Come/Should’ve Come

  • I promise you that you are not fun enough to merit a migraine, a virus, an infection, etc. If I felt like I could go (and wanted to), I would.

 

10) You’re Too Young To… Feel Like That, Be That Sick, Be That Lame, etc.ms-QyCRGr

  • Oh thank goodness! I’ll just inform my body of that and then it will realize its error and poof magically into alignment with your views of what it means to be young.

 

 

If you’re wondering what you CAN say to a zebra then try this:

If they confide in you about their illness say those two magic words–

tumblr_mzxzdepcsE1rg1ucro1_500

 

If they don’t then just treat them like a normal person!… Sick people are also just, well, people.