Autonomic Dysreflexia, Mark it Down, Could Very Well Be My Demise

It is the bane of my existence and perhaps the most dangerous medical condition that affects those with spinal cord injuries – autonomic dysreflexia. If bodily functions are monitored and maintained properly it can hardly an issue, but as you will find out in this blog, it can be life-threatening if not treated as the emergency that it truly can be.

Autonomic dysreflexia (AD) is a malfunction of the autonomic nervous system brought on by a pain sensation where a person with a spinal cord injury has no sensation. It is mainly caused by episodes in which a urinary catheter becomes blocked causing the bladder to distend to abnormal sizes and triggering full on AD characteristics. AD can also be brought on by bowel obstruction or impaction, hemorrhoids, or a number of painful stimuli that attack the body. The main characteristics of AD are an extreme pararoxsymal hypertension (an extreme and sudden onset of abnormally high blood pressure), profuse sweating from head to toe, low pulse rate, flushing of the skin, and (due to high blood pressure) a headache that is indescribably intense and overwhelming.

After years of having an indwelling Foley catheter and the constant urinary tract infections that go along with them, I suffer from bouts of AD on almost a weekly basis. There are rare instances where the effects of this malady are caused by bowel obstruction or even passing kidney stones, but the most often culprit of these attacks is from sediment produced by my kidneys clogging my catheter and “backing up the plumbing.”

Within 20 minutes there is a risk of stroke and/or heart attack and with each second that passes during these attacks one’s blood pleasure continues to climb. Needless to say, the faster a resolution is found to this situation the better. AD can be overcome by nothing more than a simple flushing of the catheter with sterile saline to unblock the clog of sediment or, in many cases, the changing of the Foley catheter. Unfortunately, autonomic dysreflexia is not a common occurrence in nursing homes, so the knowledge of how to solve this issue is not widely known by medical staff.

Just to jump out of the flow for a second, I would like to describe my rehabilitation. After spending nearly 6 weeks in an ICU in Montgomery, Alabama I was shipped to Lakeshore Rehabilitation Hospital near Birmingham. There were no illusions to what I would be doing at a physical rehab hospital, I would not be rising to my feet after a couple of weeks of physical therapy to defy the odds and walk out of the facility on my own volition. It was pounded into my brain over and over that I was a “complete injury,” which meant that my spinal cord was severed at the third cervical vertebrae and thus I would never regain sensation or use of the muscles below my collarbones ever again. I was to spend the next 8 to 10 weeks learning how to teach others how to take care of me. I had to learn each step in the process of doing my range of motion every day to prevent the atrophy of the muscles that I could not use starting at the pinky finger and covering every muscle down to my pinky toes. I had to learn how to talk a complete novice through the steps of bathing my body, emptying my catheter bag, transferring me from the bed to the wheelchair, and every other minute step necessary to keep me healthy. And yes, autonomic dysreflexia and quad coughing were most definitely part of the curriculum I had to pore over daily. One of the main responsibilities I face is making sure that I can not only communicate this information to those responsible for my care, but that they understand me and can perform the steps necessary. With this said, I continue…

Just as it is important for me to know how to describe the intricate steps in relieving my body from the effects of AD, it is absolutely essential that the medical staff realize with what immediacy the situation must be dealt. That is not always reality living in a nursing facility.

A most recent occurrence that I can describe has to do with the nursing staff completely disregarding my directions and pleas for a relief of my distended bladder from a blocked catheter. When nurses start at the facility they spend three days in orientation. During this period they learn the ropes of whatever set they are placed on and the rules and regulations of the facility as well as abiding by the rules set forth by the state of Alabama. These orientees are extremely common due to the turnover rate in my facility. When a nurse is on orientation I make sure to introduce myself. I also try to find out as much information about them as possible. I am not being nosy, but if you can remember that a certain person has two daughters, two shih tzus, or has worked with someone familiar to you it can absolutely build a bond between the two of you.

When the most recent nurse that works the weekend night shifts was in orientation I made sure to cozy up to her and make conversation as often as possible while she was going through orientation. Although she was quite close lipped for the most part, I did find out that she had been a nurse for more than 30 years and had worked nearly every position a nurse could face with the exception of a nursing home. I took her standoffishness as just a personality quirk, but I had no idea how incredibly close minded and inept she would become until her second weekend working after orientation.

I happened to be sound asleep when I was awoken by sweat pouring into my ears and down the sides of my face. As soon as I became awake and lucid I struck into action. I hit my call light and within 15 minutes a CNA had answered it. I told her that my catheter was blocked and that I was already in the throes of autonomic dysreflexia with my blood pressure already out of hand. I asked her to please ask the nurse to flush my catheter. After 25-30 minutes the CNA returned when I again had to hit my call light. She informed me that the nurse said she was busy and she would get to me when she could.

“Please, please let her know what is going on (the CNA was no stranger to this situation) and the necessity to get this unclogged as soon as possible,” I begged.

After another 30 minutes I begged the CNA to get the other nurse that works on my unit to come and if she was occupied to please page the house supervisor, I was desperate for assistance. At this point my head began pounding with every heartbeat that flow through my body. For years I suffered from migraines, but a blood pressure headache is five times the strength of a migraine. My left bicep was causing my arm to flail around in front of me and I had long since sweat completely through my comforter.

Finally, after another 20 or 30 minutes the nurse came in empty-handed. I begged her to grab a 60 cc syringe and sterile saline to blast through the obstruction in the line. She looked at me cynically and reached down and picked up the tube that ran from my urinary catheter to the catheter bag that hung from the side of the bed.

“The back has urine in it, so it is not blocked,” she said with an impatient groan.

“I am sorry, but you cannot tell if the catheter is flowing by looking at the urine in the bag,” I responded. “That is like looking at a puddle in the street and saying that it is raining. That may not be so, it could have rained 15 minutes ago or three days ago. That urine could have been in there for six hours, but there is one thing that I do know and that is that my catheter is blocked.”

“How can you tell?”

“My blood pressure is through the roof causing me to sweat profusely and my head is pounding unmercifully,” I responded.

At this point she told me that there is no way for one to tell when their blood pressure is high and that she would not flush my catheter. I swore to her that this happens all the time and that I am accustomed to recognizing the symptoms of AD and that I was perilously close to having a stroke or heart attack due to the height of my blood pressure. Her solution was to have someone take my blood pressure despite my pleas for assistance.

Of course, in a nursing home of the caliber I reside in it took a massive hunt for another half hour before anyone found a blood pressure cuff. They took my blood pressure again and again until I finally asked what number they were getting. Every time they took my blood pressure the systolic number was over 210 and diastolic was over 150. They could not believe how high it was said they kept taking it over and over.

Finally, the other nurse from the unit (who had been distracted in the room of another patient going through medical distress) came into the room and simply said that I was correct and that if the new nurse would just listen to me that I know what I am talking about and that I know my body. Another 15 minutes or so and a syringe and saline were found. Before flushing my catheter the CNA emptied the bed bag completely. Once the nurse flushed saline up my catheter and dislodged the sediment a urine stream came gushing out into the bag and over 850 mL flowed out of my bladder.

The nurse came in a few minutes later with blood pressure medicine for me to take. I refused. Within five minutes of relieving the issue my blood pressure was normal, the sweat stopped pouring, and my headache disappeared. Yet when I told her this she became belligerent believing that I was intentionally disagreeing with her to make her look bad. I told her that taking the blood pressure medication would bottom out my pressure and cause me to pass out. She argued and argued with me – even trying to dump the pills in my mouth while I was speaking to her. Finally the CNA took my blood pressure and it was a normal 110/70. The nurse left the room in disgust.

This is but a single incident with this one nurse where I have been left in a position of extreme AD for up to and exceeding an hour. Excuses vary from not being able to come because she was making out the schedule for the CNAs, because she was in the middle of a medication pass and was not allowed to leave her cart (which is not true), or simply no excuse at all – just without empathy, scruples, or morals.

This issue is a constant one. Not only do nurses not understand the significant danger that autonomic dysreflexia poses, when they are reprimanded for not acting with haste they develop a grudge against the resident and become even more dysfunctional.

I have said it numerous times to the unit supervising nurse, Director of Nursing, and administrator of the facility that one day this would be my demise. Somehow they do not seem so sympathetic.

Excerpts from the following Wikipedia page is being used in this blog entry. The page on autonomic dysreflexia and can be found at the following URL:

http://en.wikipedia.org/wiki/Autonomic_dysreflexia

A Line in the Sand

Although I have spent eight years as a resident of the same nursing home, it was only early summer in 2014 where I had finally reached a point where I was no longer willing to bend when it came to my care. After a seemingly endless parade of events where I felt as if I had been treated unfairly and unsafely by the direct care staff, I drew a line in the sand and told myself, “No more.” This entry is about that decision and how it has changed my life.

The nursing home industry may be powered by direct care workers (clinical nursing assistants, nurses, etc.), it may be run by the administrators and owners, it may be regulated by state and federal agencies, but it is most definitely funded by the residents. We may not be signing our names on the checks of every CNA that wields a bedpan, but be not misled – the cash comes from the clients.

I lay in my bed one evening thinking about this. Thinking of when I became a resident and how the nursing home slowly drained every penny I had in savings and now takes my entire SSDI check each month only giving me $30 to spend. I thought about the hundreds of thousands of dollars that the institution had received through Medicaid and Medicare on my behalf yet does not even provide me with simple necessities such as underwear or decent razors. All of this money that is funneling into the pockets of every person on salary and each worker that punches the clock and yet I was constantly being forced into compromising my own wishes of how to be treated by each employee. Three shifts a day I had to cater my needs to malcontents who were stuck in their ways and had no regard for my wishes or how I wanted to be treated. “That is it!” I told myself. “This is going to change right now.”

My decision was to communicate to each person that entered my abode that, whether I like it or not, they are in my home and I would not accept being treated as if any less. When they hit that clock they are no longer in control of me. When they agree to accept payment for taking care of me they will do so the way I choose in my home. I will no longer bend over backwards to coddle their sensitivities and that their preferences no longer outweigh my own.

Do not get me wrong, I am a very compassionate person. I have every sympathy in the world for the incredibly difficult job that these men and women do day in and day out, but when it comes down to it that continues to be their choice to work here. They chose this job. Saying this, most of these workers are not only my salvation and lifelines, but they have become my friends and family over the years. I know their husbands and wives, children, birthdays, and life stories. Not only are they the people that bathe me, dressed me, and feed me, but they are also my social stratosphere and in many respects most of my entertainment. I value each and every person that takes care of me and try to express that to them every chance I get. But do not let these familial feelings usurp the main purpose of each of our roles. I am here because I require a level of care far beyond a normal, able-bodied person and they are here because they made the life decision that they would provide this care as their occupation. Unfortunately for most of nursing facilities these lines of hierarchy have been totally blurred. I had allowed it to happen in the way that I allowed people to treat me and I was ready for it to stop.

My day was inundated with comments such as, “I will when I get a chance,” “Give me a few minutes,” and “That is not the way that I want to do it.” Every time I would hear these excuses I was left wanting and needing something. Sometimes these things would be important and sometimes they would not, but it is the responsibility of the employee to take care of the resident. If I were in their home I would not expect them to humor my preferences. I would most certainly expect to have a completely different set of rules in that instance. But that is not the case. However humble it is, this is my home and I deserve to be treated to my level of expectations. For instance, I would not expect to be treated any more favorably than my fellow resident and I would certainly not want to take valuable attention away from someone that is in distress and in more a need of immediate care than I, but no more waiting for two hours for a drink of water, no more suffering through painful spasms or serious medical issues while a CNA hides in a mentally disabled person’s room watching game shows. No longer would I allow myself to be a victim of apathy and lethargy.

I spent an entire day going from office to office in the facility spouting my new manifesto. I talked to the unit supervisor, the director of nursing, and a multitude of nurses and CNAs, and I even went to the administrator of the facility to tell him exactly how I had drawn a line in the sand and would no longer allow anyone to brush it away for more lackadaisical behavior. After years in a place that I would rather meet my friends in the back parking lot rather than letting them see how I have to live my life and would always respond with the name of my hometown when asked where I was from by new acquaintances. This is my home and I am staking a claim on it and assuming possession.

It has been nearly 8 months since I made that decision. I have not veered away from it in the slightest. It is only in the last couple of months that I have really seen results. Most of the changes have been because of the rapid turnover rate of staff. It is much easier to tell someone on their first day of work exactly how I want them to roll me in bed to put on my clothes or to never mix any of the portions of food on my plate together. It is far easier to communicate to a nurse that, even though I am paralyzed below the collarbones and have no movement of my limbs, that I know my body and I know when something is going wrong with it. It could lead to much more jubilant life if I only had to deal with nurses and CNAs who are making their first voyage into the world of skilled nursing care as my caretakers. I wish I could say the same about many of the employees that have spent more time as direct care workers. Many seem to be single-minded in their approach and insist on relying on routine and old but consistent ways of doing things. I feel as if I am stubborn enough to continue to insist on being treated as a fully cognitive and (some might say) intelligent man of nearly 40 years of experience on the planet that I might even be able to transform the way each of the residents in the nursing home get treated. After all, I could not live with myself if I knew that I was being treated well at the detriment of my fellow residents.