Tuesday, October 15, 2019

Chasing Zebras: An NP Perspective on Being a Patient with an Undiagnosed Illness

When making a medical diagnosis, providers are told to rule out the "horses" before looking for the "Zebras". A zebra is defined as a very unlikely medical diagnosis. A good example is jumping to the conclusion that a mild headache is a brain tumor before ruling out other causes. The health care team should always rule out the life-threatening potential diagnoses associated with a set of symptoms, but also be looking for the most obvious and common causes of those symptoms. When none of the standard explanations fit, then we begin looking for Zebras.

Many of my family and friends know my saga... Numbness and hyperalgesia (increased sensitivity to pain) that began in early July. It started on my right side (first my face- leading to a diagnosis of Bell's palsy, but quickly down my arm and leg). Tests were done to rule out all of the scary or life-threatening things (Lyme, MS, Guillain Barre, Myasthenia Gravis, Meningitis, Neurosyphilis , HIV, etc). My neuro exams were always normal. The only thing abnormal was sensation. The symptoms spread to my left side and everything felt incredibly heavy. My legs and cheeks have been the worse. It isn't noticeable to others but for weeks it felt like it took immense effort to smile. My tongue was numb first on the right and then bilaterally, and any worsening of symptoms led me to feel like someone under the influence of alcohol who was trying to pretend I was sober. It took great effort to feel like I was speaking normally. After a while, these symptoms make you start to question your own sanity. None of them are testable or visible to others. I asked my doctors repeatedly if they could be psychosomatic but the feeling was that they were related to a physiologic insult. My EMG (Electromyelogram- fairly painful test of the electrical activity of muscle fibers) was normal. My MRIs and CT scans were normal. The only working theory was that I had developed a post-viral neuropathy which meant a cold virus I had before these symptoms started somehow affected my nervous system. The fact that it was on both sides and over the entire body was unusual. The neurologist told me that we likely wouldn't find the cause, but that it should get better over a period of months (from my reading I knew it could be up to one year or more).  

By August we were looking for Zebra diagnoses that explained my strange constellation of symptoms. At this point I was crowdsourcing my diagnosis (to colleagues, laypeople, everyone)... I was willing to consider any and all potentials and kept a running list of the things we hadn't yet tested for that we should consider. I was also working on accepting that likely we might never know the cause or how to make it better aside from sitting and waiting.

It was also in August, the really bothersome symptoms started- I had episodes randomly in different places all over my body of feeling like there were fire ants crawling on my skin, or of a burning/itching sensation. It wasn't traveling along a specific dermatome or nerve path. It was completely random and uncomfortable. I tried Gabapentin which I eventually stopped because I felt foggy all the time. I told my colleagues I felt like I had "gone from an A student to a B student". In addition to the fogginess I had a rising anxiety. I often felt like I was crawling out of my skin. It reached a fever pitch in September. I was able to exercise and physically could do everything I did before July, but the symptoms were getting the better of me mentally. My primary care physician was amazing and helped me navigate all of this. In mid-September, after many conversations, I mentioned to her something I hadn't thought of before: ever since last October, when I exercise and then go out into cool air, I break out in hives. The first time it happened it was disconcerting, but it happened a few times over a several month period so I didn't think anything of it. My PCP immediately suggested I see an Immunologist/Allergist who works in the local area and likes "zebra" cases.

At the same time, I took more control of the things I could control. I was back to baseline in my workouts. I started eating an autoimmune diet (thanks to the suggestion of a dear friend), and began acupuncture treatments. Two weeks ago, I saw the immunologist/allergist, who told me that my case was definitely "weird" (in a nice, "You are an NP so I can tell you that you are a zebra" way).  I told him about the numbness and the painful symptoms. Then I added in the hive piece. He immediately said "You have cholinergic urticaria". What the heck is that, you ask? It is an inducible hive disorder in which hives are causes by environmental stimuli (heat, cold, exercise, etc). The Mast Cells in the body (which are important in immune response and allergic response) are involved in the reaction, releasing histamine in the skin. (Too much of a good thing with those Mast Cells in this case).

What he said next really had me intrigued: people with chronic hive disorders often have a prodrome (an early symptom that indicates the onset of a disease or illness). This is often described as transient and patchy, either itching, burning, or painful sensations. The fix? An antihistamine like Loratidine (Claritin) every day to prevent the histamine release. He told me to try that for two weeks and if the painful symptoms improved, we know they were caused by the chronic urticaria. He said he couldn't fix or explain the numbness, but again reiterated there was nothing to suggest it was life-threatening. That said, there was hope that perhaps we had an answer to the painful symptoms. Two weeks later and the claritin is working. Today I had an episode of post-workout hives but I think that was in part due to eating some new foods I hadn't been eating on the autoimmune protocol diet. 

So apparently I have two unrelated issues, and the numbness and hyperalgesia have been making the hive disorder feel a lot worse than it had previously. Even on a day like today when the symptoms flare up a little, at least I know we have a path and a plan. I wouldn't have chosen to be a Zebra, but I'm thankful for persistent healthcare providers who helped me get to the bottom of things. (At least some of the things, since the numbness and hyperalgesia are still an issue, but I am hopefull they will improve).

Tuesday, July 16, 2019

I love mysteries... I don't love being one

In 5th grade, my parents met with my teacher because they were concerned that all I would read was Nancy Drew books. The original Nancy Drew series, the 80s reboot "Nancy Drew Files", all the Nancy Drew/Hary Boys crossover books, and the choose your own ending Nancy Drew books. I wanted to be Nancy Drew. The teacher told my parents that my reading ability was not in question and as long as I was devouring books I could read whatever I wanted.

As a pre-teen and teenager I wanted to be Nancy Drew. It was years into my nursing careeer that I realized solving medical mysteries brings me a lot of joy, and that in my own way I get to Nancy Drew the heck out of things. What clniician doesn't love getting thattidbit of medical history that no one has- that nugget that leads to an unexpected diagnosis. Pulmonary embolism is one of my favorite diagnoses because it often mimics other things. For my healthcare friends, there is a great book entitled "Mastermind: How to Think Like Sherlock Holmes" that lends some insight into looking at things differently. 

So on to my medical mystery.  I'm sharing because if you work with me you have likely seen me as a patient this week, and I am open to other thoughts/suggestions. Here are the highlights:
- After fighting a cold (sore throat, cough, etc) for a week or so, on Saturday July 6  I noticed in the morning that my right cheek felt numb. When I say numb, I dont mean without any feeling, more that "pins and needles" feeling you get when novocain at the dentist is wearing off or a limb is waking up from being asleep. My motor activity was still intact. No slurred speech, no facial droop. My healthcare friends will understand this: I knew I would not consent to tPA just for this facial numbness, so I didn't rush to the ER. I was thinking perhaps Bells Palsy. I eventually went to the ER, got lab work including testing for Lyme, and antibiotics for possibly Lyme.
- Sunday July 7- I woke up and the numbness was still in my face but also down my arm. ER trip #2. CT and CTA (CT scan with contrast to look at the blood vessels) of my head and neck. Brain and carotids looked great. Then an MRI of Brain, C, and T spine. All totally blissfully normal. I was now on Valtrex in the event it was shingles or another viral issue, and Doxycyline. At this point we ruled out some of the scary things: stroke, MS, carotid artery stenosis, ALS, and a variety of infectious disease.
- Wednesday July 10- woke up and the numbness was going down my leg (now on my entire right side). A neuro exam showed I'm actually hypersensitive to pain but have the constant pins and needles (the good news there is I don't have to worry about getting an injury and not feeling it).
I ended up back in the ER so my very awesome neurologist could assess me, and they ordered a Lumbar Puncture. My cerebrospinal fluid was normal, except for a high number of lymphocytes (a type white blood cells) which suggests there had been an infection. 
-Thursday July 11- Developed a wicked spinal headache from the LP. I have a pretty high tolerance for headaches after 30+ years of migraines. This was pretty horrendous. Caffeine and hydration are the antidote. The alternative is a blood patch but we saved that as a contingency if the conservative management didn't work.
- Saturday July 12- Woke up to pins and needles on my left side. (Not nearly as bad as the right, but there nonetheless). Saw the neurologist and since motor function and reflexes were totally intact there wasn't really anything to do but wait. He still thinks this is a post-viral syndrome that will burn itself out. 
- Monday July 15- the spinal headache was still unbearable. Went to the ER where we tried IV caffeine (IV caffeine...all the coffee drinkers reading this are thinking yeeeesssss!). It was about the equivalent of 9 Mountain Dews. I was shaky but the headache persisted. 
Image result for mountain dew
So that led us to the blood patch. Not my idea of a good time but at some point you just want to feel better. 
Image result for blood patch
Tuesday July 16- My back is sore for sure, but manageable. The numbness is still there. It hasn't gotten better since it started. As I've described to alot of colleagues and friends, my tongue feels funny so when I speak I feel like an intoxicated person who is trying to sound sober. (But my speech actually sounds normal). The ongoing opinion of neurology is that this is the effect of a virus I had previously and it should hopefully improve over time.

Lessons Learned
- Sometimes you have to find peace with uncertainty. This is definitely frustrating but there hasn't really been an alternative option. We've ruled out all of the big bad things, so that is the silver lining on which I need to focus.
- 4 ER visits in 8 days starts to make you feel like a crazy hypochondriac. Friends and healthcare providers who validate your medical concerns help you to feel less crazy. (and yes...I have asked multiple providers if this could be stress/psychosomatic and no one believes it is).
- The simple gesture of a doctor or nurse pulling up a chair to talk to you when they obtain a history or perform an exam makes all the difference in the world. I know how busy nurses and providers are, but so many have taken the time for me this week. 

So many thank-yous to my hospital family, my actual family, and my amazing friends. In the grand scheme this numbness isn't a huge deal...but the journey to ruling out the big bad neuro insults and the ongoing addition of symptoms definitely led to a few stressful days. 

Friday, August 31, 2018

Lessons Learned from the Other Side of the ICU Bed

Six years ago, we lost an amazing patriarch. As the nurses in the family, and the oldest child/grandchild, my Mom and I flew to Michigan to be there with our grandfather and his wife as difficult decisions were made. Dr. Frank McDonald was a rocket scientist (literally). He was chief scientist on the Voyager spacecraft, which would exceed all expectations as it spent decades looking for the edge of our solar system. He has a wikipedia page which outlines his scientific accomplishments. Grandpa McDonald was the Sun in our McDonald family solar system. He always said he wanted to die at his desk, and he would retire from one job only to go on to the next one. On August 30, 2012, he was giving a scientific lecture to a group of colleagues. He finished his talk and collapsed. On EMS arrival he had agonal respirations and required intubation. Treatment at St. Joseph's Medical Center quickly revealed a massive cerebral hemorrhage (he was on warfarin for atrial fibrillation).

Stepping away from the emotion of losing a beloved family member, there are three very specific things that stuck with me during our experience. Things that I had to appreciate from the family member perspective in order to truly integrate them into my own practice as an Acute Care Nurse Practitioner. I have shared this story often, but as the anniversary passes once again I thought it time to write it down.

1- When delivering unexpected news, provide information in small bits and ensure family members have the information they need to take appropriate next steps. My Mom and I are a high functioning nurse and NP. We eat crisis for breakfast. Our every day at work is often someone else's worst day. On August 30, however, I vividly remember myself walking around in circles, packing a bag without actually accomplishing anything, while talking to the trauma social worker from the St. Joe's Emergency Department. She gave me step by step instructions: "Get a pen and paper. Here is the address of the hospital. Here is the airport you need to fly in to. Here is what to do when you get here." Without her to focus me, I'm not sure how the details would have gotten taken care of.

2- Color-coded scrubs truly are helpful for patients, families, and visitors.
Our hospital was just starting a conversion to color-coded scrubs when I traveled to Michigan (RNs were to wear navy, Nurse Techs a carribean blue, PTs and RTs maroon, etc). There were mixed feelings about this among staff, as it was a big change and seemed to take away some independence and creativity. On the other side of the bed, as a family member, the colored scrubs were incredibly helpful. St. Joe's had fully integrated this into their dress code, and I knew anyone walking in with grey scrubs was a respiratory therapist, anyone in blue an RN, etc. It helped know to whom to direct which questions, and provided a sense of structure. There was also a key to the scrub colors hanging on the wall in the room to clue visitors and patients into the color scheme.

3- A "Comfort Tray" is one of the most thoughtful and underutilized support mechanisms we have for family members in critical care.
After spending a night of very intermittent sleep in the ICU, I awoke to a cart in the corner that held bagels, pastries, coffee, and juice. There have been countless times I have given family members a gentle reminder to take care of themselves and make sure they sleep and eat. To have someone remove the thinking for me and give me the tools I needed to take care of myself without having to leave my grandfather's room was a huge gift. It was a reminder that the staff wasn't just taking care of my grandfather, but us, as well. With the tray was a thoughtful note from the hospital and their palliative care team letting us know they were thinking of us and offering something small to help ease our journey. I had never ordered a comfort tray prior to that experience, but now I do it often. That small gesture meant so much, and allowed us to focus on other things.

While none of us hopes to walk in the shoes of our patients or their families, it is often inevitable. Taking time to reflect on that perspective can help us to further hone our craft and provide even more exemplary, evidence-based, and compassionate care.

Monday, May 23, 2016

Charging Over the Hill

For some reason, 40 is an age that has always held a negative connotation. 40 puts you "over the hill". Technically, the average life expectancy of a woman in Maryland is 81.27 years, so perhaps 40 is mid-life.. but why is it an age to be dreaded???? I never really gave it much thought. Now, with 24 days to go, I am pumped!

Yes, things are sagging that I wish weren't, yes I will need reading glasses before too long. All things considered, I don't dread 40. I AM EXCITED to turn 40. 2016 has been a banner year so far and it isn't even halfway done. At 40, I've learned lessons I wish I had at 30. The past few years have not been the easiest, but I'm hitting my stride in my professional life, my family is amazing, and I have the best friends anyone could ask for.

I still have lessons to learn. I let the moods and attitudes of others impact me more than I should. I'm not good at saying "no" when I'm asked to take on something new, even if my plate is too full. I have learned, however, to appreciate the small things, the downtime, the quiet in between the chaos.

So as I turn 40, I embrace the last 40 years and look forward to the next 40. I am beyond thankful for those who mentor me, who put up with me when I hit a stumbling block (or have a complete and total meltdown), and those who encourage me. Here's to charging up the hill and embracing what comes next!

Sunday, February 21, 2016

"Yes You Can"

Several years ago, I regularly attended my friend Sherri's spin class. Sherri has a way of being incredibly motivating as an instructor, and often uses the phrase "Yes You CAN". She also says "you can do anything for 30 seconds (or one minute, or one hour)"... a phrase I repeated to myself often during triathlons and running races. More recently, at a different gym, my trainer Emily often says "Yes You CAN" while motivating her classes. She also says "If it does not challenge you, it will not change you." On rough days at work I repeat this phrase to myself.

Yes...these are motivational phrases used to help participants get through a one hour fitness class...perhaps not something people would see as life-changing. For me, every time I hear these words spoken, I want to work a bit harder, to push further, to realize that next goal.

It isn't just at the gym... This year I have had the opportunity to realize a goal I have attempted to achieve three times... a spot on the ballot for a position with a nursing organization I have worked closely with for over a decade. The first two times I didn't make it, but I am fortunate to have several amazing mentors who are leaders in critical care nursing... It was them telling me "yes you can" that led me to apply another time... them telling me "yes you can" that led me to believe I was worthy of applying in the first place. There are many amazing critical care nurses and nurse practitioners out there, some of whom I get to work with daily. So what makes me think I am qualified for this position in the first place? The people who told me "Yes You CAN".

So often we are focused on looking forward, on the next task or next goal. I am absolutely guilty of this at times, but also find that taking a moment to encourage someone else when I am struggling can help me to refocus. If we take just a minute, to look over our shoulders and extend a hand to someone who could use it, and say "Yes You CAN"... how would that impact the world around us? It doesn't have to be someone who is facing an immense challenge... perhaps someone who is already excelling at what they do.. or someone who could use that little push.. Take a moment to say "Yes You CAN", and see what happens.

This topic has been on my mind a lot lately...especially in Emily's class when she says those three little words. Today, a friend shared a story that has gone viral. It is a potent reminder of the amazing things that can happen when just one person says "Yes you CAN." Take a minute to read the story of Sam, the dancing Barista, and then ponder how you can do the same for someone else, even if on a much smaller scale. 

Monday, February 1, 2016

Groundhog Day: One Mom's Story of Stroke Survival

Disclaimer: This isn't my story. This is Amy's story. I was fortunate to be her caregiver, and now her friend. I have Amy's permission to share her story because stroke awareness is so very important.

If you have seen the movie "Groundhog Day", you know that Bill Murray gets endless attempts to live the same day over and over again, until he gets it right. Many of us in healthcare wish we got "do-overs" when we think we could have diagnosed a problem sooner, or treated it differently. But we don't. On Groundhog Day 2006, things went exactly right on the first try...

Amy's story could have gone so differently. It could have been the story of a young mother who suffered a debilitating stroke, unable to use one side of her body and unable to speak. Perhaps with extensive physical and speech therapy, her condition would have improved. It would have been a long time, if ever, before Amy returned to work. Amy's husband Chuck would have been supporting her recovery and parenting their two young sons.

Instead, thanks to an astute coworker, educated EMS providers, and a push to give tissue plasminogen activator ("tPA" or the "Clot buster") to stroke patients, Amy's story is very different. Amy was working at a local school when she developed the weakness and inability to speak clearly. Her colleague recognized the signs and called 9-1-1. EMS providers rushed her to the Emergency Department with extensive detail about her "time last known normal" and her symptoms. In the Emergency Department, staff acted quickly to perform the necessary tests and begin tPA administration. This is when I met Amy, as I helped to support the staff in giving the tPA. This was our second time ever administering it, and frankly, tPA scared us. The concerning side effect is bleeding, especially in the brain, but without it the recovery prospects may be dismal.

Within hours, Amy was moving both arms and legs...soon she was able to begin speaking. I will never forget her telling me how bothersome the bright lights had been, and how loudly everyone spoke to her because she couldn't talk back. Amy left the hospital with minimal disability. She underwent follow up care and management of her stroke risk factors, but ten years later she is a Mom of two wonderful young men, who now travels the country as a consultant to train teachers.

Simply because someone recognized the signs of stroke and acted "FAST", Amy has been able to impact countless others.
- How many swim meets has she attended in ten years, cheering on her sons?
- How many teachers has she impacted with her training?
- How many people were able to recognize the signs of a stroke in someone else because they heard Amy's story?

Ten years later, stroke care has been refined and tPA use, as well as advanced neurological intervention, are much more widespread. The key is for stroke patients to get to the hospital as soon as possible.

So what can you do? Don't ignore the warning signs of stroke. Even if you aren't sure, call 9-1-1 and get checked out. Remember to "Act FAST". The most beneficial stroke care is time sensitive.
Have more questions? Check out the Stroke Association or the American Heart Association.

Sunday, January 3, 2016

I made another Mom cry...and I'm so glad I did!

After a wonderful family getaway, I rushed to the grocery store to pick up food for diner and the coming week. Our kids have reached the age where they can be left home unless they have a burning desire to shop with me.

My first stop is always the produce aisle. As I was choosing my vegetables, I noticed a Mom with a toddler (a boy around 3) in one of those car carts.

Any parent knows those carts...beloved by children and IMPOSSIBLE TO STEER!!! The benefit of an entertained child (or two) weighs out over the muscle strain caused by trying to drive the cart.

Said Mom was picking out squash, and had placed it on the scale and gone to get a plastic bag. She stopped mid-step, and looked back at her son. "I'm sorry, did you want to help me?" He struggled to get out of the car, and Mom reached over to help him. She took him over to the scale, where she asked him to count the squash and they began to talk about how much it weighed.

I thought to myself "What an awesome Mom". I thought of the dozens hundreds of times I coaxed my kids through the grocery store with promises of "five more minutes", or a donut if they behaved. I thought of how few times I took the time to involve them in the process. I thought again, "What an awesome Mom". Anyone who knows me knows that I am a bit of an raging extrovert, and have been known to strike up a conversation just about anywhere. I didn't want to intrude on her Mom moment, so I went about my shopping.

Three aisles later, Mom and her car cart were coming toward me amidst the Taco Tuesday fixins. She apologized for her large cart. I told her she had nothing to apologize for, and that I had seen her in the vegetable aisle and thought she was an amazing mother.

With tears in her eyes, she said "My whole family has been sick. My younger daughter, me, my husband. We are finally getting out of the house after days at home and I feel like I have been so impatient with my son. You made me cry."

I told her again what a wonderful Mom I thought she was, and went about my shopping. All evening, I have been thinking to myself about how much more we could do to build one another up as mothers (or parents). So often we feel inferior because we don't make pinterest-worthy crafts, or we feel impatient, or we feel like we are barely holding it together.

All it takes is someone occasionally saying "you are doing a good job", or in my case a snowboard instructor who tells me that my son was a really good listener...It just takes a minute to make a Mom feel like they are getting it right. Why don't we do it more often????