diagnosed

Who seriously drives themselves to the Emergency Room? 

I can remember messaging back in forth with my wife deciding what to do. I never thought I would decide to go to the hospital. But at some point sitting at my desk I felt this overwhelming, as clear as day, voice from God tell me to get up, get in the car and go. I’m not even sure I told my wife but I just got up and left. No joke I was swerving walking down the long haul out of the office. I honestly barely made into the car. The drive to Tri-City Medical Center is kind of a blur for me. What I do know is I cried the entire drive. I cried to God to not let me get in a wreck. I cried at God for answers, and swore up and down what I would do if he would spare me. I cried for my family. My daughter was barely 1 year old and all I wanted most was to be the best father. I swore at God to not take me from my little family. 

When I arrived at Tri-City Medical Center I knew I was not at the most top notch facility in San Diego. We had just moved to Oceanside only a few months previously and just hadn’t got around to getting our insurance all figured out. In fact, we had both been with Kaiser so long that we were just confused by anything else. But with that, my only plan was to get inside the Emergency Room and get the answers I needed. I don’t think the thought had even crossed my mind that I would be staying there long. 

I hate hospitals. I had Asthma as a kid that tried to take me away from many of the activities I wanted to do, and sent me to the hospital more than a kid should have too. The parking lot was packed in front of the Emergency Room and so I reluctantly parked knowing I didn’t want to make a fool out myself falling on my way to the front door. Gathering myself, I made the walk and was greeted with a packed Emergency Room with a huge line of people standing waiting to meet with the screening nurse. Trying to stay calm and remain standing up right in the line, my legs and hands were on fire. From all accounts on the outside I looked fine. I mean I was dressed in my business casual slacks and tucked in button up. Let’s just say I stood out to the majority of those in the Emergency Room on a Tuesday afternoon. Having now spent many weeks in four different medical facilities I’ve seen that, like any other good product, Emergency Rooms get repeat customers over and over. Standing in line, I could feel my legs getting heavier and heavier. It’s like my body was finally succumbing and giving in. My biggest fear was I would have a repeat of my meeting with my primary care doctor who literally blew me off. 

Finally next in line, I remember looking at my hands thinking how on earth do I explain what’s happening to me. How do I convince this guy I’m not crazy. Walking up to the screening doctor, I was greeted and asked how I was doing. I broke down, held up my hands and said something to the effect of, “I can’t feel my hands. I can’t feel my feet. I’m having a hard time walking. I don’t know what’s going on but I need answers.” I literally broke down sobbing in front of this man. I could see in his eyes he knew I was scared; and I was. I was absolutely trembling and I couldn’t stop crying. After a few questions and exchanging insurance I was sent to the waiting room with the rest of everyone. Hours seemed to go by. My phone had little service so I had only sent short texts to my wife that I was waiting. 

Waiting seemed like an eternity. But I felt a slight calming that seemed settled my nerves. It’s like having cried it-all-out in front of the nurse finally reconciled the emotionally charged anxiousness lurking in the back of mind with the forefront of my minds eye staring at my tingling hands. Finally they called me back. Escorted to the back I waited in a make shift room waiting for the ER doctor. Again, feeling incredibly nervous that this was my chance to get the answers I desperately needed. My mind mostly raced with the fact that my symptoms seemed to be only measurable by the amount of tears I poured out. Finally, the doctor came in and yet again I broke down. Holding my hands up and staring at them I simply sobbed. I think I could barely utter a full phrase to him. 

ER doctors are incredible, and I was lucky enough to happen upon a really good one. Dr David Pregerson of Tri-City will come up again in a later post. After stumbling over my words and sobbing through a series of questions I can’t remember. He asked me to stand up and do a squat with one foot. I couldn’t do it. My balance was barely hanging on. I think he was just as surprised as I was. He escorted me over to another small room only separated by the other rooms by a sheet. Sitting me on the bed, he pulled out a wood tongue suppressor and broke it into a few pieces. Taking off my shoes and using the sharp end he asked me to let him know when I could feel the sharp poke. Starting at the tips of my toes all the way up my foot it was completely numb. Moving to my hands and up my arm it was the same, completely numb. Back to my feet, he asked me to roll my pants up. Making his was up my ankles, shins and knee with the sharp end of a wood broken tough suppressor. My legs were completely numb up to knees. I couldn’t believe it and couldn’t stop sobbing. The doctor then uttered some crazy word asking if I had ever heard of it. I didn’t even know what he said and was literally melting down. He then reached for a marker and wrote the words, Guillian Barre Syndrom on the sheets of the bed. “I’m not exactly sure if that’s how it’s spelled. But I have only meet one person in the ER who had this.” I asked him, “How long have you been in the ER?” He then quickly replied, “Over 20 years. I know you want answers but don’t google it just yet.” He asked me to hang tight and pulled the sheet closed. Attempting to read what he wrote on the sheet I couldn’t help but hear him discussing with the nurse to contact Neurology. 

After some time he came back in the room and told me that I would likely be admitted to hospital today and he was just waiting for a call back from Neurology to come meet with me. The doctor showed some hesitance in getting ahold of Neurology by saying something to effect to his nurse, “We need to call them again and convince them that this guy has all the symptoms for this.” I later learned that only 1-2 cases of Guillian Barre Syndrome per 100,000 people occur each year. It’s so rare that, depending on the population of your area, most doctors and nurses will never witness a case in person. 

After sometime, waiting alone in this makeshift room, I was greeted by Neurologist Dr. Anchi Wang and Internal Medicine Hospitalist Dr. Mark O’Brien. I wanted more than anything to keep my composure answering question after question, but the intense emotions overwhelmed me and I just began to sob; again. Im pretty certain I recall saying something to the effect of, “I am so sorry I keep crying. Is this like a normal symptom of this thing or something?” Regardless of the emotional rollercoaster I had been riding, I will never forget the calmness that slowly began  to roll through me talking through my symptoms with these two. Dr. Wang pulled from her pocket a safety pin, and like earlier, started poking from my toes and up my leg. I confirmed again that it was completely numb. She then reached for a Reflex Hammer and asked if she could test my reflexes. I will never forget the hollow thud sound the hammer made at my knee. Zero reflex, nothing, not even the slightest movement. Moving to my arms, nothing. I had zero reflexes. I feel like my jaw hit the floor. I had always considered myself athletic, and confident in my abilities in sports and hobbies. Not fully understanding what reflexes actually are my heart sank with the thought of how I can I operate without reflexes. Unlike the numbness and me having to subjectively explain it, often leading to stupid tears, this I could not fake. I don’t remember much of our conversation after this but they told me that they would like to run more tests and that would require admitting me to the hospital today. 

A nurse escorted me back to the waiting room via wheelchair this time. At first, I began walking out of the back room on my own but found myself falling against the wall catching my balance  on the way out. There is no doubt that the intensity of the past week had reach its tipping point and my body was finally able to give in. I didn’t call my wife until after I was back in the waiting room. Even then I think it took me a while to make the call. I think our call was short and I believe I couldn’t even tell her what the Dr Pregerson had suggested it might be. In fact, after all of that I couldn’t even remember how it was pronounced, spelled or even what the hell he was talking about. I was terrified to have my wife find the worst google had to offer about it. It wasn’t until she found me in the hospital bed that I was able to tell her the proper name of it. 

At the bottom of each of my posts I plan to outline the details of all symptoms, procedures, treatments and medications. I hope these high level details will prove helpful for someone in need. Before being admitted I went through a series of tests, including a CT scan of my brain, blood draws and urine sample. Finally being stripped down to a gown, secured onto a hospital bed my wife Kenz and my daughter Emmy arrived. By now it was past 6pm, I had been in the ER for over 4 hours. Seeing my wife and daughter seemed to bolster my need to be strong for them. Full of tears, I could finally share the name of the suggested diagnosis of Guillain Barre Syndrome with her. I couldn’t even pronounce it, so I just showed her my phone with the initial googling of it. Regardless of the tears, having absolutely zero knowledge of GBS kept our conversation focused on the task at hand of being admitted, arranging help and contacting my work. Adding to the craziness, I had been interviewing for another job opportunity and had my third interview tomorrow. How do you seriously contact them and say, “Hi I can’t make the interview because I was just hospitalized with a rare disease I don’t know how to pronounce?” This was the beginning of everything else falling on my shoulders of my wife. A stress that I will never be able to fully understand, fully appreciate or absolutely being able to pay back the debt. That day Kenzie began the baring of a burden that has never let up to this day. 

The next day the doctors worked quickly to perform the tests and procedures needed to rule out other potential diagnosis. I was amazed at how much my bodies motor function had degraded the next day. Relying heavily on wheelchair and being transported to each procedure made for a long day. In the morning a full MRI was done. In the afternoon a Lumbar Puncture, a nice name for a Spinal Tap, was done. I have now had two of these lumbar punctures done, and lets just say this one at Tri-City was the better of the two. They brought be to a room with a specialist to perform the procedure utilizing a live X-ray machine. I can remember them wheeling me into the room and they asked if I could lift myself up onto the procedure table. Not thinking much of it, I went ahead and attempted to lift myself up and its like there was nothing left. The nurses rushed to catch me from falling out the wheel chair. I can’t remember sobbing at this point but I do know this was the first time I couldn’t get myself up anymore without help. The purpose of the Lumbar Puncture in the diagnosis process is to analyze the spinal fluid, looking for elevated protein with normal cell count. 

The next day the diagnosis was confirmed of Guilian Barré Syndrom. Though the diagnosis was scary the doctors were all optimistic that with early treatment the progression of symptoms could be slowed down. The current treatments of GBS are considered effective but to a point not fully understood. Because my symptoms seemed be in the early stages of progression the doctors were hopeful that Plasmapheresis would be the most effective initial treatment. Plasma Exchange or Plasmapheresis, is a process by which some of the patient’s blood is removed and the blood cells returned without the liquid plasma portion of the patient’s blood. It may work by removing harmful antibodies contained in the plasma. Though the process of Plasma Exchange is not the most uncomfortable procedure it did require returning back to surgery to have an implanted catheter in the large vein of my neck. Which I then had to keep in for the next 9 days with 5 rounds of Plasma Exchange. In the image above you can have a look to see. Much like dialysis, this catheter had two IV lines built in. One to draw the blood out and one to return the cycled blood in. 

The optimism of the doctors undeniably calmed my soul. With that and an outpouring of love and support of family and friends I couldn’t help but feel hopeful and at peace with our treatment plan.