When Your Life is Taken From You

INTRO:

No one warns you how quickly your life can change or how much you can be challenged as a person.

I’ve worked with many patients throughout my career. While the majority are hospital based, some have been from outpatient clinics, some have stemmed from an Eastern medicine approach, and some have even been animals.

You sympathize with your patients. You tell them “I’m so sorry,” or “I understand; this must be incredibly difficult for you.” While their stories pull at your heart strings a bit, you are trained to do your job and focus on that job. Due to the high stress, demands, and critical situations you can be put in, you literally cannot invest yourself too much emotionally. If you go over the top with emotions, you won’t be able to do your job as efficiently and it, therefore, affects the patient negatively in the long run. You give as much as you can give without losing sight of your task. I will tell you the majority of us in healthcare don’t really think too much about “What would I do if this happened to me?” or “How would I handle it?” If we ever do venture those questions, we tell ourselves “Well I would do A, B, and C.” We’ve been around the block a few times and are all problem solvers in this field, so it’s no surprise that we make the worst patients.

With healthcare workers ignorance isn’t bliss with us and so it drives us mad when we are put in that situation.

I literally went mad.

Let’s go back a bit…

PART ONE:

January 2004

I remember sitting in History class as our teacher was drawing on the overhead and felt the biggest thud in my chest that made me sick to my stomach. My heart felt like it was racing a million miles a minute. I couldn’t catch my breath and thought “This is it! I’m literally going to die at 15 in History class. What a terribly unepic way to die.”

My friend who sat next to asked if I was okay and I told her I felt as though as I was about to pass out. So I headed down to the nurse after class. My heart rate was at 160 bpm. She asked some questions about me and eventually passed it off as having anxiety due to the stress of my parents divorce, CPS, and court hearings. I remember thinking how horrible it must be for people who have panic attacks all the time.

Then the “panic attacks” became progressively worse symptom wise and stuck around much longer.

September 2005-November 2005

December 2007-February 2008

January 2010-April 2010

June 2012-October 2012

January 2013-February 2013

October 2013

July 2014-October 2014

September 2015-Present

My symptoms manifested into numbness, feeling light headed, near syncope, vertigo, overwhelming fatigue, low blood sugar, blurred vision, unable to walk from the bedroom to the kitchen, and more as time went on. I saw every type of doctor and felt crazy. I tried every type of diet, exercise, and health lifestyle tip there was out there with very little relief. It was “All in my head,” they would tell me or “It’s anxiety.” I had one doctor throw the “Chronic Fatigue Syndrome” term at me and knew it was basically insinuating he had no idea what was wrong. I had another doctor at 18 tell me I may have P.O.T.S (Post Orthostatic Tachycardia Syndrome), but it was unlikely and even if I did, that it was a loose medical term and all I needed to do was drink more Gatorade to cure it. She said it was just “my normal” that my heart was in tachycardia a lot of the time because it was “only around 115/120" when sitting for vitals. Being 18, I obviously didn’t think anything of it. Another doctor diagnosed me with Meniere’s Disease at 22, but couldn’t explain the other symptoms (although the Meniere’s proved to be a true diagnosis and I’ve lost a lot of my hearing from it). I kept chugging along the best I could. Even after fighting to get through college, I would scan as many patients as possible, run into a room downstairs, elevated my feet, and pray my symptoms would leave before the second part of my shift. It wasn’t until 2015 while working at the hospital, that my body completely shut down.

PART TWO:

Being in healthcare for a number of years at that point, I thought “I’m going to figure this out, fix it, and lead a normal life. For crying out loud, it really shouldn’t be that difficult when I know so many people in so many different fields.”

What a rude awakening…

An MRI scan in showed periventricular white matter changes in my brain to which the neurologist informed me “It could be normal for your age or it could be early stages of Multiple Sclerosis. We will keep an eye on it.”

My TSH (thyroid) panel came back as very mildly hypo (low) to which I thought was the reason I was feeling so bad only for it to go back to normal after I was out of work for a few weeks. The endocrinologist mentioned that happens sometimes with a hectic work schedules where you work all day and are on call all night like I was. However, my IGF-1 levels came back elevated. This was suggestive of a pituitary tumor in the form of Acromegaly. As a result of this, I was sent in for another MRI.

This MRI showed the right side of my pituitary gland bigger than the other, but the radiologist couldn’t confirm or deny this being a tumor. More blood tests…

Elevated IGF-1

Elevated IGF-1

Normal IGF-1

Normal IGF-1

Normal IGF-1

“We’ll keep an eye on it.”

Multiple sclerosis, a brain tumor, what the heck?! I didn’t even care what was wrong at that point. “However severe it is, let’s figure it out, fix it, and move forward so I can get back to work. I don’t have time for this crap,” I would tell the doctors (of course in a much nicer way).

I felt defeated. My life revolved around medicine so why couldn’t I figure it out?

A few episodes of what I went through in 2004, landed me in the ER during my shift after an electrophysiologist I worked with sent me. None of the tips I taught my patients were bringing my heart rate down. After a 10 hour day of everyone trying to get my heart rate down from 150–170 (no SVT mind you — just sinus), I finally broke in the 90's that night and went home completely exhausted. We didn’t run much testing because as an echo tech I’ve been scanned or have scanned myself a million times; including when those episodes happen. The only thing I noticed with my echocardiograms was my heart reacted the way any other patients did during tachycardia. My heart was technically normal —we agreed testing was a waste of my time.

The only thing I had the PCT document that struck a chord with me after I left was my orthostatic vitals that I made her do. My heart rate would sky rocket more than 30 bpm with each position.

“P.O.T.S. This is classic P.O.T.S. How annoying and inconvenient,” I thought.

PART THREE

I went home and researched it more learning all the symptoms I had were classic dysautonomia in the form of P.O.T.S. and IST (Inappropriate Sinus Tachycardia). I just never realized the way it absolutely destroyed your body and the ridiculous amount of symptoms that came with it. I scanned myself more thoroughly this time wracking my brain out with equations and alternative techniques (yes ultrasound is more than rubbing gel on a pregnant belly and determining if you’re having a boy or girl).

Warning: To my fellow echo techs out there do not judge my scanning based on this scan. We all know it’s darn near impossible to scan yourself especially when you’re already a hard scan like I am so yes I’m “off axis”. This was also on an old machine that was being looked at for the issues it was having:

Cardiologists and techs look at the LVIDd (Left Ventricle — main pumping chamber of the 4 chambers) right away which in my case is 3.77cm. It’s normal according to ASE guidelines so anyone would move on in this case.

Here’s the thing though — when we take the time (which is unrealistic with the ridiculous quota demands of a hospital) to calculate the LVIDd/BSA it can make a difference. We get 2.28 in my case. ASE guidelines are 2.4–3.2. Being at 2.28, my LV isn’t where it should be. I followed suit with my other chambers and found that overall my heart is just too dang small. This coins with the term “grinch heart syndrome — a heart two sizes too small.” Although the theory has been disputed by one research study, it seems to hold true with my heart and many others.

I felt dumb. This had been missed and I actually work in the field. How many other patients had been missed?

I have major family history of cardiac issues including congenital. I should have known.

For good humor, I went to a cardiologist I didn’t work with (you know in case I really was crazy) and presented my findings (poor mans tilt table test, echocardiograms, EKG’s) to which she instantly agreed this is what I had. She mentioned a lot of physicians are still being educated on it and it’s more serious than “a high heart rate”. For those who care to take the time, Brittany Murphy’s brother did a documentary on dysautonomia that helps shed light on it more (he believes it contributed to her death):

Now the question is “Was is it still possible I could still have a brain tumor if I have elevated levels return?” It’s possible. “Could I still have MS?” Maybe. I suspect that I don’t though, but plan on following up once a year until I don’t have to anymore.

PART 4

Depression is an evil aspect of life and one I wouldn’t wish upon my worst enemy. It consumes you in the worst ways leaving you feeling defeated, worthless, and you wanting nothing more than to throw in the towel.

I got worse. I became fairly bed bound from October 2016-December 2016. My symptoms became more extreme than they had ever been and then came full on syncope to top it off. I was a flight risk.

I hated life.

It wasn’t even a life because I wasn’t living. I was getting by; I was surviving and I worked too hard in life to do just that.

With that being mentioned, I believe in being real and up front.

I would be lying if I told you there weren’t days I prayed to just be done with life. That I wanted nothing more to end it all, because everything had become pointless and I had become so useless in my eyes.

I would be lying if I said I didn’t cry for my poor patients who went through this and managed to stay strong despite being told “It’s nothing.”

I would be lying if I said I didn’t constantly overwhelm myself with every piece of cardiac knowledge I knew trying to find a cure for this inconvenience in my life.

“There’s canine dysautonomia, but it comes in a more severe form than with humans (similar to how valley fever is worse for dogs). Can we study canine dysautonomia to cure humans? Do I scan an Australian Shepherd who has it and compare his study to normal Australian Shepherds?”

“I wonder if you can open up the vessels more with a mesh type graft and create a better circulatory response therefore lowering the flight or fright response in the heart? Would this possibly lead to CHF later on though?”

“Is UCLA done mapping the hearts nervous system? I need to look at this.”

“Why is the SNS system overrracting like this? Where does it connect on the mind map here? D-1, D-2…”

“Refraining from deconditioning is essential so how does this play a role in the nervous system of the heart?”

My brain tortures itself 24/7 trying to come up with a solution. It makes matters worse, because the problem is in the field of medicine I chose to study and dedicate my life to.

At the core of it all, I would be lying to you if I said I didn’t get angry with God (I respect those of you who don’t believe), but here’s the truth:

I grew up in a dysfunctional home that I won’t get too much into but to sum it up as much as possible the judge stated “It was one of the worst cases he had seen in his entire career,” as he was approaching retirement. That’s life unfortunately for a lot of kids and it’s nothing to pat myself on the back for. I had a court therapist tell us “We were likely to repeat the same pattern and that it was just statistics.” This sent a fiery rage in me that pushed me to NOT be a statistic, to rise above, to know that the best revenge was being successful, and to know that being the best role model for my brothers was the best thing I could do. However, I couldn’t wait to grow up because then that nightmare would be over and all my hard work would have paid off.

The little I had left that stemmed from me: my health, my dignity, my self worth, and a career I loved were taken though.

As humans we can’t help it. We want to scream “It’s not fair! Why me?!”

I’m guilty of doing that and truthfully, I did wallow in self pity a bit. Part of me knew that there was a good reason for this and I’ve held onto that. The other selfish half of me cried out, upset that I had already fought through enough, and wondered when it going to be my turn to enjoy life (if ever).

Depression unfortunately does that to you.

EPILOGUE

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” ~ James 1:2–4 (NIV)

Life is never what we expect it to be and it’s not about us ever. I still have hard days, I still get bouts of depression, I still hope to find a cure, I still hope to not miss anymore important events, and I still hope to work my way back into the world some day. More importantly though, I hope my experience is a match that creates a fire.

I’ve never been a “My goal in life is to have a white picket fenced house, marry the love of my life after the most romantic wedding, be at the top of my career, and have lots of babies.” No offense to those of you if that’s your goal in life; that’s a great one and I hope I get to experience those things as well, but anyone who knows me will tell you that’s never been who I am.

While sitting around a bunch of my friends in college who were mapping their future out, one had asked me what I had planned in life. I thought about it and answered her:

“I want nothing in life except to change the world in some way. If I die before I find love, but made a positive movement in the world, so be it. If I go through life suffering the entire time, but it sparks a positive change and creates a difference, sign me up. I don’t care for much in this world when I really think about it. I could not go through life not attempting to fulfill what I feel is my purpose; to use any suffering I had for a greater good above my own. I could die young and be perfectly fine with it.”

I’m human and I lose track of that sometimes, but I genuinely feel that way and have to remind myself I’m here for a very short time; I have to use it wisely and remember that it’s not about me. Differences aside, I believe God gives us a calling on our lives and we are on a temporary battle field. There’s distractions, there’s pain, there’s war, there’s suffering, and nothing but chaos with a few pieces of joy along the way. It’s a daily struggle to remember my main purpose here is to use the tools and experiences I have to help (even if it’s just a tiny bit) move the world forward in some way that is for the better.

If you are at the end of the rope and find yourself barely hanging on, please know:

It’s temporary, there’s another side, and your story will make a difference.

I can only hope mine did.