Dara' s Story of Hope
Story Contributor: HUY TRAN, September 7th 2017
On Valentine's Day, February 14, 2014, I woke up feeling extremely weak and fatigued. I could barely move or get out of bed that morning. I'd had a lingering cold for some time. My breathing had become increasingly labored months earlier after receiving a flu shot around the end of October 2013. Within ten days or so of receiving the shot, I felt fatigued and my breathing was growing more difficult. I didn't connect the shot with the breathing problems at the time. I thought my asthma was worsening and that I needed to see a doctor about it.
That November I began actively searching for a new doctor among those listed in the physician's directory of the new health plan I'd recently signed up for. Turned out the insurer wasn't very helpful locating an in-network physician taking new patients. Nor would they pay for one out-of-network. After many weeks of wrangling with them and searching unsuccessfully through their directory for a doctor myself, I became so ill that I was finally taken by ambulance to the Hospital ER. By then it was clear that the problem was more than asthma or a cold. My breathing was labored, my limbs were numb, my body was tingling, I was extremely weak and I could no longer walk or stand on my own.
My neighbor followed the ambulance to the hospital ER and waited with me there. I remember laying on a gurney asking her to take care of my pets and telling her I would be home the following day after I got this sorted out. She left for a few minutes to go get a cup of coffee. I must've fallen asleep. I remember nothing after that.
Later I was told the doctors had done a spinal tap to check for Guillain-Barre Syndrome and that I had pneumonia. I was told that I'd been communicating with the doctors all along right up until I was ventilated the following morning. I have no memory of any of that. The next thing I remember was waking up several days later paralyzed on a ventilator in the neurointensive care unit.
Luckily, I was taken to a teaching hospital where the doctors did a spinal tap to test for Guillain-Barre Syndrome. I learned while researching GBS later that people with this syndrome are often sent home from hospital ERs. GBS is fairly rare and not the first diagnosis most doctors look for. Mine was severe, I couldn't breathe and I may not have lived through the next day unventilated if I had been sent home.
I remember the lights overhead being extremely bright and my name being repeated over and over very loudly. I dreamed that I was hovering above looking down over a nurse's shoulder reading my medical chart. The next sensation I had was opening my eyes, looking up at the ceiling wondering where I was and what had happened. I saw the medical equipment around me and realized I couldn't move my body. My anxiety soared and I started panicking. I had to stop the momentum of the terror I felt. All I could do is move my head from side to side. I tried to be rational, to be calm while I assessed the situation. I did a lot of self-talk to soothe myself through those first panic-filled moments. I couldn't let the terror of the situation consume me; I had to get a handle on it. My "solution" was to distract myself, to make my mind go over everything I could remember--every detail of anything I could recall, from the time the ambulance picked me up to where I found myself in that moment. If I fell asleep, I'd start the process over again remembering--obsessing--over every detail that I could recall.
I didn't know then what was wrong and I wasn't being told much--not that it really mattered since I was retaining very little of what they were telling me anyway. The ventilator prevented me from speaking to the medical staff. All I knew was that I had something called Guillain-Barre Syndrome--which I was having a hard time remembering the name of--and that it was rare. Great, I thought. Of course, I would have something rare.
Between the drugs and the GBS, my brain wasn't processing or retaining much at all. More than anything I craved uninterrupted sleep and relief from that unrelenting jittery, jangling sensation in my body. There's numbness, paralysis, hypersensitivity, and that tingling/jangling sensation that's like a nerve-wracking vibration that you can't escape. As I understand it, the nerves have been unsheathed by antibodies attacking the myelin sheath that surrounds them. It feels like ungrounded electrical impulses surging randomly throughout the body causing this incessant jangling sensation.
I lay there hot, dripping sweat, struggling for breath, sleep deprived, exhausted, and aware of how serious the situation was. The main disease symptom (paralysis) seemed insurmountable to me in that frame of mind. At one point I lip-synced a request for hospice. If recovery wasn't an option, I didn't feel that I could live as a paralyzed quadriplegic for the rest of my life. I didn't want to die, but I didn't want to live that way either. I remembered a quote from Deepak Chopra that became my mantra whenever someone gave me news that wasn't encouraging: Believe the diagnosis, not the prognosis. Which I interpreted to mean: the prognosis was within my power to determine.
About 3 1/2 weeks into my stay in the neurointensive care unit I had a tracheostomy. A few days later I was sent to another facility that supposedly specialized in tracheostomy care. It was a dismal place but they did put a small device into the tracheostomy apparatus that allowed me to speak again. I still couldn't move my body, but slowly small movements began returning. Their occupational therapist gave me an oddly shaped twisted fork to practice feeding myself. My fork-aim landed everywhere but in my mouth. The flexibility in my upper body was returning a tiny bit at a time and I was beginning to feel more hopeful.
Two weeks later I was transferred to a rehab hospital. I slept for the first three days I was there. I was exhausted from weeks of restless sleep on an egg crate mattress intended to prevent decubitus ulcers, but very painful for someone with GBS. GBS leaves the body numb, paralyzed--and hypersensitive to touch or pressure of any kind. After laying on these mattresses for six weeks It felt like my back and sides were covered with bruises. At the rehab hospital, I finally got to sleep on a regular mattress and had the first restful sleep I'd had since being admitted to the hospital. Sleep heals. After sleeping for 3 days I felt able to get into a wheelchair and--hallelujah!--take a shower. At the end of the seventh week, more of my upper body movement was returning.
Thereafter, physical therapy and self-care were the focus. By the time I went home three months later I was still in a wheelchair, but I was forcing myself to get up and walk a few feet at a time--albeit painfully, with the walker. Learning to walk again was no fun at all. Still, I sent the wheelchair back and made myself walk with the walker, then with the cane. I was wobbly and my balance was poor. I would walk out of my slippers and leave them behind without realizing it. I couldn't feel my feet. Every day began with me stretching my legs and feet in order to get up and walk. It took about a year and a half before I could walk without stretching out my calves and feet first.
It is now three years later and I do have some residual symptoms remaining from the GBS. Fatigue, and numbness in my feet and lower legs. My hands tremor sometimes; I do still have to stretch them out before writing in longhand. And I have 59% of my lung capacity remaining. The prognosis was far less optimistic than the outcome has been.
The one thing I would like to see come from this experience is finding an easier, more effective way for paralyzed, ventilated patients to communicate. It's traumatizing enough to be suddenly paralyzed, but being unable to speak or otherwise communicate takes that trauma to a whole new level. Communication empowers the patient and the caregivers attending to them. I can't stress enough how important it is.
In August 2016 I received a very fateful email from a former patient who had been treated in our neurointensive care unit. Dara was admitted to our ICU more than two years before in February of 2014 with a diagnosis of Guillain-Barre Syndrome. It was a quite treat for me to receive feedback from a former patient, especially to see how much improved she had become since her time in the ICU, while in the throes of her disease. At this point she still had some minor residual effects from the disease but had regained the ability to walk. It was instructive and somewhat vexing for me to learn of her suffering and tribulations while being a patient in the ICU. Being paralyzed for an extended period and completely dependent on another for all your basic needs was bad enough, but the communication barrier, I learned, greatly compounded the problem. Having a sense of hope is of paramount importance to weathering the storm of this tumultuous disease process. To that end Dara has devoted herself to developing a communication device to help patients in similar situations. Furthermore, she has graciously offered to volunteer her own time to come in to the hospital to speak to patients with GBS who may be in the same despairing situation in order to provide them with a sense of hope.
By: HUY TRAN
University of New Mexico Health Science Center