Avoiding 'IVs To Go'

Posted by Michael Collins in Life After Paralysis on July 25, 2016 # Health

If it seems like there is a lot written about bowel and bladder care in Life After Paralysis, you are not mistaken. Those two subjects occupy much of the time of those of us who are paralyzed as, if not given the proper care, it can be life-threatening when things go wrong with either of them. That is especially true for Urinary Tract Infections, which have been common in my life since my 1988 spinal cord injury.

For some reason, I often end up as an example of what not to do when it comes to preventing UTIs. I never drink enough water and, like many of my peers, I usually ignore the long-running UTIs that have minimal symptoms. That is not always possible though, as late last month two of them joined forces and "walloped" me.

At first the symptoms were not too bad, but a headache, slight fever, painful urination, lethargy, muscle contractures and decreased but cloudy output finally became too much to ignore. After seven days on oral medication and no change in the symptoms, except getting worse, I gave in and went to the urgent care clinic.

The decision to seek medical care was made easier when I heard from a friend who was calling from a hospital where he had been undergoing treatment for a similar, and serious, UTI for over two weeks; the infection had progressed so far that his only option had been treatment with intravenous medication while a hospital in-patient. My situation was similar. The second bug which had infested me could only be treated with an IV-administered antibiotic, like Raid on steroids, so they gave me a couple of options for that treatment.

The doctors talked about hospitalizing me for the care I needed, but I lobbied against it. In my experience, mainstream hospitals are the worst places for taking care of someone with quadriplegia. I never get enough rest there due to all of the noise and interruptions and miss my routine "quad care" like twice daily range of motion, my shower chair and ceiling lift for transfers in and out of bed. Besides, the hospital TV channel choices are minimal and I wouldn't be able to accomplish any computer work while there.

My other option made more sense. I could be treated at home, with the medication received via IV; I went through that once before, five years ago. This time the course of treatment ran for seven days and the doses were administered through an expensive pump that hung on my wheelchair during the day and my bed's headboard at night. Doses were dispensed once every 12 hours.

The empty IV bag had to be changed once a day, replacing it with a fresh one that had been stored in my refrigerator. My two adult daughters joined me in the clinic with the home infusion team that first day so they could learn how to change the IV bags. Somehow they fit that into their busy schedules, so they could help assure that I had a fresh dose of antibiotic every afternoon.

The IV treatment did not always go smoothly. I had an incident during the second night when the 2:06 AM dose met with some type of problem and the alarm on the pump started blaring. That also stopped the pump, and I couldn't reach it to find out if there was anything I could do to stop the alarm.

I try to be prepared for everything because I live alone, and have learned to adapt to that. My method for dealing with nighttime emergencies is a speakerphone on my bed. I also have a small touch light so that I can see what I am dialing and to look at some important numbers that are taped to my phone.

After about 20 minutes spent listening to the squealing alarm as I repeatedly misdialed the phone I finally reached my oldest daughter, who arrived in another 20 minutes: fortunately there's not much traffic at 2:30 AM. She simply hit the start button again and the alarm stopped. Both of us were a bit tired when she changed the bag the next afternoon.

After a week of IV treatment the symptoms have abated. The infection slapped me around a bit with some pain and headaches; those headaches might also have been related to the fact that I quit coffee "cold turkey" because they say caffeine irritates the bladder. I'm going to ease back into the coffee, but in smaller quantities.

The IV has been removed from my arm, and I'm hoping the symptoms stay away. It has been five years since this happened last time, but apparently the drug they used at that time will no longer treat the "super bug," AKA Pseudomonas, that was growing in my system recently. I hope it doesn't evolve into something even more drug-resistant if this should reoccur.

There are lessons to be learned from all of this, and you'd think I would learn them, finally, after battling dozens of similar infections during the past 29 years. I need to drink more liquids, take cranberry pills, attack the pain earlier, and not wait a couple of extra weeks before visiting the doctor when symptoms reappear. I'm sure my kidneys suffered a bit from all of this; in about three months I will be getting my twice-yearly MRI where the specialists should be able to check for further damage.

Other than that, my Life Living With Paralysis is back to normal--whatever that is.

© 2016 Michael Collins

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.