There are few things that will make you jump like pissing blood will. Anyone reading this who either has a spinal cord injury or intimately knows someone who does knows exactly what I’m talking about. Living with the numbness and nerve damage and paralysis is one thing, the secondary effects are what drive people like us nuts if we’re not careful. There is little money thrown at SCI research as it is. By the time the folks racing to find a cure take the lion’s share, as they should, those intrepid, dedicated few researching the day-to-day stuff get next to nothing. The trickle-down effect of this lack of research is a raging river of misinformation, disinformation and no information available for the everyday medical professional when they encounter someone with an SCI falling under their care.
Last month I wrote about the lack of preparedness on the part of the medical establishment. Little did I know that three days later I would be in the emergency room with a massive UTI, blood draining from my bladder and a blood pressure reading of 198 over 116. I was living out that very nightmare. Maybe Karma’s a bitch and I should have kept my mouth shut or it only strengthened my resolve to shout into the storm that faces those of us trying to keep healthy. I may be pissing into the wind here, but at least I can now say I’m doing it free of infection!
My story goes something like this…
Friday, April 24, 2015:
A hot shower and in bed by 12am. I am a night owl sometimes. I slept most of the night, but awoke in the early morning and noticed strange sensations in my abdomen and lower back. I fell back asleep and woke up the next morning.
Saturday, April 25, 2015, 10:30AM:
I ate a normal breakfast and responded to a few morning emails. Without warning while having a conversation with a family member I began passing blood and lots of it. Within twenty minutes I was in an ambulance on the way to the ER.
Saturday, April 25, 2015, 11:30AM:
I was laying on a gurney in the ER hallway of a local hospital that will go unnamed with a case of Dysreflexic Shock that would make an Elephant miserable. My bladder was having spasms and contractions, it could not empty itself so my blood pressure was through the roof. The pain and throbbing in my neck was excruciating. The only family member there was my mother and knowing how fast things can escalate she had to watch with frustration and amazement as nurses walked past and chatted, filled out paperwork and spoke on the phone like they were running a day spa on the beach at Malibu.
Saturday, April 25, 2015, 11:45AM:
My mother politely informs the nurse of my Dysreflexia and asks, “Do you know what that is?” To which she responds, “Oh yes, it’s when the Foley Catheter needs to be removed!” I was not wearing a Foley Catheter. Autonomic Dysreflexia can be caused by a myriad of situations, from a fold in your pants to a blister on the skin and a triage nurse in major hospital in America did not know it.
So went the day. Fortunately we were able speed things along, but for two and a half days I had stay on top of every doctor, nurse and aide to make sure I did not have any other issues. This included adamantly reminding the resident Urologist at least four times that I should NOT, under any circumstances be given blood pressure medication because once the pain was under control my blood pressure would return to normal. If I had blood pressure meds in my system it would have caused a severe drop in pressure causing a reverse effect and possible death! Both the Urologist and the attending Physician had no idea. Holy Hell.
After 48 hours on an antibiotic IV I was much better and they sent me home. Fortunately I am ok. I have a few more tests to check on my kidney health and so forth, but I am certainly relieved to be home and healthy. It simply reinforces my belief that those of us in chairs need to take our health seriously, eat right and exercise so we can prevent these dangerous situations. It is a sad thing that we must protect ourselves from the very system established to protect and heal us, but we can and should.
This past Memorial Day weekend marks the beginning of what promises to be a beautiful summer. Help honor the Vets by also supporting a cure for Spinal Cord Injury at The Big Idea. Many veterans suffer physically and emotionally as a result of their sacrifice from this absurd injury.
Much love to all of you and thanks for reading!