Anyone with CIDP, or any autoimmune disease that requires Intravenous Immunoglobulin (IVIG) infusions will know that there is really not that much to look forward to. Just to let you know what it is like, you sit in one of those comfortable hospital recliners while a nurse sticks you with an IV and you sit there all day whilst watching the drip, drip, drip of the IVIG as it is slowly infused into your body over six hours.
I was hoping to write this post whilst I was in the chair, but I cannot move the hand that the IV is located in and typing with one hand is too hard. Unfortunately, with my poor venous access and the viscosity of the IVIG, even the slightest movement sends the iMed machine into distress so the nurse has to come and fix it.
Yes, the process is boring. Yes, it is long. Yes, you do feel like crap afterwards and yes, that day for me is tomorrow. I feel as if I have started this post off on a really negative note, but two things. First, it is not all bad. Second, there are things you can do to limit the boredom. Now there are not many people who have IVIG, but there are many people who have lengthy infusion treatments, and this should go a long way to helping them too.
Firstly, decent preparation. I find that if I have got the body going and the heart pumping a bit before I get to the hospital. If this is the case, I find that my veins are bigger which makes it easier for the nurse to put in the IV and less likely to have problems during the infusion. So on IVIG mornings I like to get up and do a bit of exercise (for me, either a session with my personal trainer, or a swim.) I like a big breakfast and lots of fluids to up the blood volume and vein size. Lastly I pump a stress ball all the way to hospital to really get the veins up. It is also important to stay warm so your veins don't shrink inside your arms.
Secondly, combating the boredom. Yes, six hours of nothing is really boring, and seeing as I can't use one arm I keep myself from getting bored by watching movies. Right now I am downloading three movies onto my computer for tomorrow. I bet you wish you knew what they were, but I'm not telling;)
I also sleep sometimes, read a book, or talk to the other patients.
Thirdly, the nausea. Although I have never actually been sick I have still felt nauseated. I find a simple remedy for this is to keep snacking. The hospital supplies a never ending supply of cheese and crackers, so I am always eating them. I used to bring a big bag of M and M's with me but they used to only last 20 minutes plus the nurses used to eat them.
Fourthly, the headache. Nasty headaches are a side effect of IVIG, and prevention is the best cure. IVIG pushes up your blood volume, which increases your blood pressure. Your body combats this by expelling water, causing dehydration. Blood pressure plus dehydration equals headache. To combat this, drink plenty of water, take pain relief (neurofen works best for me) and if all elso fails ask the doctor for a script of blood pressure meds, a beta blocker like inderal works best.
Lastly, a couple of general pieces of advice. Get someone to drive you or catch a cab. There is a good chance you won't feel like driving home. Second, be nice to the nurses. They do a great job and do the best they can. If you are not nice to them they will not be nice back to you. If I feel up to it I willl let you know how it went tomorrow. Until then, stay well:)
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