Learning something new

I am of the firm belief that there is something new to be learned every single day. Today I learned something interesting that had never really been explained to me before. For several years now my WBC has run high, just about 14.5. There was not ever an infection to explain this, and we just assumed it was just another part of my weird normal. This summer after starting Plaquenil, my WBCs dropped to a normal 8. Being tested again today, it was still 8. I mentioned this to the hematologist, more as a side note than anything else. He explained that high levels of epinephrine causes a release of a specific kind of WBC that is from the peripheral vasculature. So, at last a reasonable explination for something. Using the Plaquenil did not change the epinephrine, but as it limits the immune response, the release of WBCs was also reduced. I thought this was proof that there is always something new to learn, and something new to discover about your body. Even if nothing else comes from this visit, it was worth it just to learn. Oh and to be reminded that I need to shave my legs before visits...oops. :)

Lemon tree very pretty...

What, you may ask, does a lemon tree have to do with dysautonomia? Consider the classic drug induced ballad by Peter, Paul, and Mary "Lemon Tree". In the song the lemon tree is very pretty, but the lemon fruit is bitter. Imagine a hapless fellow walking into an orchard of lemon trees, their blossoms lovely, and the air redolent with citrus. An unknowing person might take up a lemon and, unsuspecting, take a bit of that fruit. The inside of the fruit is not what it looks like from the outside. And this is the great irony of invisible illness.

All people who battle a disease or disorder that is not visibly obvious to others have what is called an invisible illness. We may have a lovely countenance, much like the lemon (although some of us are a bit riper than others), but like the song says... the fruit is impossible to eat. Our bodies have betrayed us just as much as anyone with an obvious disorder, and yet we are always doubted for the lack of proof. The other side of the coin is that we are able to hide our diseases from others if we so wish. We can pull ourselves together and push through a holiday or special event, but inside we pay a price. There are moments when I think how much I would like to have a display for my vital signs that I could wear on my sleeve or chest, so everyone around can see that while we are chatting my resting heart rate is 120 bpm, or my BP is 190/150. Even better, then they could see what happens when I stand up. But I think of the lemon tree, and am reminded that it does not have to advertise for people to know what is inside. One bitter taste and you get the hint.

But you are always tired!

I often catch myself saying "I'm so tired" over and over again on bad days. But "I'm tired" doesn't begin to describe it. Have you ever had the flu? You know the bone crushing fatigue that makes you miserable, that is what I feel most of the time. On days when things are looking up, I feel more like just after the flu, and days like today, I feel like full-blown so sick you can't stand it tired. My body feels like it is being crushed by a lead weight that holds me down. Each movement is difficult, and takes strength of will to complete. I don't know that I ever knew what normal energy levels felt like, but I know this is wrong. It is not as simple as "tired" it is more like soul sucking exhaustion. So when I complain about being tired, forgive me for whining, because it is either that or give up entirely and not get out of bed at all. Oh and don't make fun of the pajamas!

School Break

One of the great ironies of my life is that while I am busy in  a class I can't wait for a break. When that break finally comes, after ten weeks of hard work, I feel quite bereft. It makes no sense, but the routine of checking the discussion board, reading, doing homework, writing papers, and complaining about the whole mess, is missed when I am free of it! I felt the same way when I stopped working. How does someone miss the incessant alarms and chaos of critical care? Easy, stop doing it. Hope this reminds everyone that sometimes it is the hardest things in life that bring the greatest rewards. Or at least entertainment.

How high is too high?

Let's talk catecholamines. Epinephrine, dopamine, and norepinephrine are catecholamines that are made in the adrenal gland and regulate heart rate and blood pressure in the body. These chemicals are regulated in the body by the autonomic nervous system. Norepinephrine is the primary neurotransmitter of the sympathetic nervous system, also known as the "flight or fight" system. As medical professionals we all know the role of epinephrine and dopamine in the body, and have often given these as drugs to assist in a patient's hemodynamic stability. But most people are less familiar with norepinephrine. In critical care we may know it better as the drug Levophed. It causes systemic vasoconstriction and increases HR and BP. In patients with the hyperadrenergic form of postural orthostatic tachycardia syndrome (POTS), all catecholamines may be elevated, but more so the norepinephrine. It is the very high levels of norepi that are caused by inappropriate sympathetic response to any and all stimuli. This means that whereas the normal person may have a slight rise in HR when they are standing, or when they are cold, or hungry, the person with H-POTS gets a wildy inappropiate spike in HR, and often, BP. So how high is high? Well, the normal person has a norepi less than 400, even when stressed. The diagnostic criteria for H-POTS is a norepi of greater than 600 when upright. The last time mine was tested it was 984. It can go even higher for some patients, but when it gets over 2000 it is time to consider an adrenal tumor such as a pheocromocytoma. So there is the answer...

Nashville and Vanderbilt

Last week was quite the adventure. Having waited now for months to be notified of an appointment date at the Autonomic Dysfunction Clinic at Vanderbilt, imagine my shock when they called me the Friday before last to remind me of my upcoming appointment! Oh yes, I had an appointment at the much vaunted Vanderbilt on the following THURSDAY. So not only did I have to stop my cardiac medications (and clonidine how I missed you) but I also had to stop my IV fluids, all while trying to find a way to get to Nashville from Louisville. Needless to say, I was a little stressed, and without a way to limit the sympathetic outflow, I was a wreck. The upside was I had gobs of energy, the down side was my HR and BP were through the roof. I didn't sleep for days. But, my good friend Robin agreed to take me to my appointment, and girl vacation was on! Two crazy ladies and a dog hit the road and made it to Nashville with only a little misdirection and much much laughter.

The next day was the every entertaining Autonomic Functions Testing (AFT). For people with dysautonomia it is a form of torture. They test the vagal tone by assessing the reaction to extended Valsalva manuevers, and it almost always guarantees a solid black out. They assess for changes in heart rate and BP with deep breathing, in teens this might be called pulsus paridoxus, but it is not normal in adults. They cap it off with a set of orthostatic vital signs. The good news is that they have stopped doing the cold pressor test (in which they submerged the hand in ice water for one minute). My HR at rest was 116, and standing was around 145. Not too bad. BP flat was 136/84 and standing was 134/104, then bottomed out and was unattainable. No big shock there.

So the end result is that I still have POTS, I still have an excessive adrenergic response, and I really need my IV fluids every day. Talked about some medication changes to stop the wanton high BP, and about the need to avoid any stress. I sort of laughed, because as a graduate student, I am not sure how they expect that to happen! Every one LOVED the dog. Miss Lyla was a big hit with the staff at Vanderbilt! I need to get her a patch that says "no petting, and yes that means you". :)

Overall it was a worthy venture into the land of specialty care. Robin and I had a lot of fun and Lyla was a great addition to the mix. It just makes me grateful to be close enough to get this kind of care, and to have great friends who will get me there!

A Day With LYLA

So, yesterday I brought home the first dog I have ever owned. Her name is Lyla, and this lovely girl is more than just a cute face! She is a fully trained medical alert and response dog. A black german shepherd, she has been trained to detect changes in the body that indicate certain processes, and alert her person to those changes. In my case, this means alerting when I am hypertensive or hypotensive and need to lie down and rest or take my medication. She can open doors, get drinks out of the refridgerator, bring the phone to get help, pick things up when they are dropped (great for those orthostatic moments), push elevator buttons, and all sorts of handy things. She is also great company! I mention this because I want disabled nurses to consider both the possibility of using a service dog, even for things other than seeing and hearing impairments. I also want other nurses to think about the use of service dogs in the hospital and offices. How would you feel if you came to work and your co-worker had a 70lb dog with them all day? Or if you entered a patient room and saw the dog there in bed with the patient. Would you know what to do? For instance, nobody but the dog's owner should touch a service dog. That means no petting, no offering treats, and no sweet talk (because this leads to petting). Why? The smell of too many people can confuse the dog from the scent they are waiting to smell on their person and alert with. It is also because the dog MUST be focused on their person and only on their person. Think of it like a heart monitor. You would not want your patient sharing their heart monitor with their friends, family, and caregivers! Same thing. Only my heart monitor has the sweetest brown eyes.

What is dysautonomia?

Dysautonomia is a category of disorders of the autonomic nervous system. For those unfamiliar with the ANS, it is the system that regulates all basic life functions in the body (think of it as the automatic part). It controls heart rate, blood pressure, body temperature, digestion, sleep, and a thousand other minute functions. The ANS has two branches, the sympathetic (think flight or fight) and the parasympathetic (like the great big off button in our brains). In my case, my disorder is characterized by excessive sympathetic response with some parasympathetic involvement.
As stimuli in sensed by the brain, be it physical or emotional, the hypothalamus and limbic system categorize that stimuli and order a response by the body. For example, the person is cold, and the brain recieves the message "cold", the ANS recognizes this sign, and tells the body to shiver. This is the appropriate response. In people with dysautonomia, the body may fail to recognize it, or my over respond. The person may then run a fever in response, or their body temperature may drop as no response occurs. The same thing happens with the heart rate and blood pressure. When we stand, the body does not get the message "standing" and fails to constrict the peripheral blood vessels to compensate. The blood pressure plummets, the heart rate increases (but again instead of increasing enough to compensate, it goes wildly high), and the person loses consciousness. Every basic function of the body is confused and inappropriate.
That is the most basic explination. In a later post I will describe the types of dysautonomias, including my own disorder, Hyperadrenegeric Postural Orthostatic Tachycardia Syndrome. This is complicated by Mast Cell Activation Disorder and Orthostatic Hypotension.

Welcome!

This being my first blog I think it is simply polite to say hello and welcome to the site! I graduated from a community college in 1999 with my Associate Degree of Science in Nursing (ADN). I had such high hopes for a great career, and started with a critical care internship at a local hospital. Upon completing six months of classes, including ACLS, and three clinical rotations in critical care areas, I took a full time position in PACU. It was a great fit, and over the next few years I worked in several PACU's, and later, as an agency nurse in adult ICU. An unfortunate shoulder injury led me to the NICU, where I worked in both a level 3 and 4 facility. It was during a shift in the NICU that I collapsed. That evening in the ER, I went into SVT and became profoundly hypotensive. When I left work that day and went down to the ER, I had no idea that it would be last time I would work in nursing.

So, after 8 years I have obtained my BSN and am part of the way through my MSN at Kaplan University Online. I am on the Nursing Educator track and hope to be able to teach nursing online when I am done. Nurses who are disabled are a unique source of knowledge that is being wasted, as hospitals often demand a certain degree of physical (for good reason). By seeking an MSN and a career in teaching, I can make the most of the education and experience I already have. So, I hope that those who read this blog can share in the journey to completion of my MSN, and then as I enter the career I have chosen. But moreover, I hope they can learn what life with a dysautonomia is like, and how being a nurse has allowed me wonderful opportunities to help others.