Thursday, March 13, 2014

Surviving Infusion Centers

Many of the new drugs coming out to treat autoimmune diseases are infusion-only. This means that most of us spend a fair amount of quality time sitting in an infusion center with an IV in our arm. I know that's how I started out my morning today. 1000mg solumedrol: even better than coffee. I have picked up a few tricks for making the process a little more bearable, or at least a little less unbearable. Feel free to add your own suggestions or experiences in the comments; I'm always looking for new survival skills.
 
Surviving an Infusion Center Visit:
  1. If you're getting a new medication for the first time, find out ahead of time whether they plan to give you benadryl along with the infusion. Often times monoclonal antibody therapies (like Benlysta) are given with benadryl to keep the patient from having a reaction to the medication. If they plan to give you benadryl, you may need someone else to drive you home.
  2. Bring headphones/earbuds. Trust me on this one. I don't know how many times I've been stuck in one of two situations: a) Watching horrible TV because another patient likes it, or b) (this is what happened today), Listening to the life struggles, dog care philosophy, family history and all other personal details of an overly talkative patient. Gah. I really, really don't want to hear how your St. Bernard can say "outside," honestly it can, etc. Really. Solution? Pop in the earbuds and plug them into an MP3 player, iPad, tablet, or whatever. Which brings me to the next point:
  3. Bring something capable of making music. Ok, a violin is probably not appropriate, I admit. But bring some form of electronic device that plays music so that you can drown out Ms. Talkative. My personal preforance is for one of the following: an iPad or a Kindle Fire. Bonus: if you have wifi you can also surf the web. I also like both products because they fulfill the next requirement...
  4. Bring something to read. Do not count on there being a TV, or being able to control what it is showing. I don't care if you're not much of a reader; bring a magazine or a comic book or War and Peace (Full Disclosure: I've done that last one). I prefer eReaders to paperbooks in this particular scenario because they are lighter and easier to manipulate with your non-IV'd hand.
  5. Bring a snack. Chances are, if they tell you you'll be there an hour you'll be there at least an hour and a half, maybe two. Some places have a fabulous array of snacks to offer you, but some don't. Having something to nibble on when noon has come and gone and you're still stuck in a chair is a good idea.
  6. Dress comfortably and practically. For the love of everything holy, do not wear a miniskirt. Just. Don't. You're going to be reclining in a chair with your legs extended. The nurses will not think you are hot if you have said legs fully exposed. They will think you're a moron. A very cold moron. Do not be that moron; think ahead when you get dressed. Today, for example, I wore a pair of dark grey dress slacks that are a size too big for me and a nice black Vera Wang top that cleverly disguises the fact that it is basically a long-sleeved tshirt. I also wore a bright blue infinity scarf, because I always get cold in infusion centers. Note: I did not wear white. Every now and then nurses have been known to spill blood. Instead, I tend to favor loose, dark clothing that I can wear into the office after the infusion is done.
  7. If you wear contacts, bring eyedrops. Hospitals tend to be very dry. If you already have dry eyes thanks to an autoimmune disease, the combination will make you want to claw your eyes out.
  8. (From Ison in the comments): Come to the appointment well hydrated. This will make it easier for the nurses to find a vein. Also, I've been told that it can help your kidney deal with some classes of medications.
I'm sure there are many other tricks; those were just the ones that popped into my mind. A lot of my suggestions admittedly focus on tuning out the world. Don't get me wrong, I've had lovely conversations with other patients...I just don't like the ones who decide to tell the world their life history, with footnotes, graphs and pictures at no provocation. I would go so far as to say that, even if you are Amish and don't own an MP3 player, break the rules a little bit and get headphones anyway. You can just hide the end that plugs into the device, and it'll give you an excuse for ignoring Mr. or Ms. Talkative. I've heard everything from Dog Philosophy to deep religious witnessing. 

Finally, my last note of advice is this: don't be afraid to speak up. If you're cold, ask for a blanket. If you need a glass of water, ask for one. It's perfectly alright to ask the nurses for something; that's why they're there. As long as you ask nicely and respect that they have other things to do they won't mind and you'll be a lot more comfortable.

4 comments:

  1. I work in an area that provides pre-chemo education for an infusion area, but am a fairly recent reader of yours due to my "hey, let's say you have lupus cuz we don't know what else to call it". My big suggestion that we tell all patients is to be sure to hydrate the couple of days leading up to your treatment so that it's easier for them to start an IV.

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    1. Thank you for that; I will add it above. I've had some infusion centers stress being hydrated, and some not mention it at all. It's good to know that it does indeed help.

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  2. Many public libraries now allow you to check out audio books to ad to your arsenal of portable things to distract you. A really compelling thriller might help. But I love the image of bringing a violin!

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    1. It's probably kind of hard to play the violin with one arm, anyway...

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