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5 Years of Ig Infusions

Last week I celebrated my 23rd birthday, which is hard to believe I know. The day before my birthday marked five years exactly since I had my first Ig infusion.

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I was diagnosed with a primary immunodeficiency towards the end of my senior year of high school, after many years of sickness, infections, tests and endless doctor’s appointments. As I think is typical, it took a while to get insurance approval for infusions and get set up with the specialty pharmacy.

Finally on June 17th 2013 an infusion nurse came to my home and gave me my first dose of IVIG. The next day I turned 18, and the day after that I graduated from high school. Before heading out to school that fall I started self-administered sub-q infusions. And now five years later here I am.

When I was diagnosed and told about Ig infusions I was excited, I was hopeful, but I didn’t know what to expect and honestly did not expect them to be as life changing as they have been. That first year I was on infusions I went almost an entire year without an infection; before I started them infections were almost constant. Since then other bodily incompetencies have brought me down a bit, but the infusions still help tremendously. ms-95DmfR

At some points over the last five years the realization that these infusions are life long
has been daunting. Sometimes on infusion night I’ll drag my feet. I’ll think, I just really don’t feel like doing this today. Then the thought that when I’m 30, 50, 70, 90–I’ll still be
doing these infusions, well that’s a bit of an exhausting thought.

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But the truth is, it’s just part of my life now. And man I am so grateful for that. It’s hard to believe I’ve been doing them for five years already. It’s gone by fast. Week by week, month by month, and suddenly five years have gone by. And though they’ve certainly had their rough spots, it’s been a great five years.

I look forward to the next 60-70ish years with my infusions–til death do us part.

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!

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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