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Faces of Stroke - Logo 100px  transparent

Jodi C.
Jodi C.
Survivor

Tracey E.
Tracey E.
Survivor

Reciprocal Empowerment
Reciprocal Empowerment
Healthcare Professional

Daily Inspiration
Daily Inspiration
Stroke Survivor

Sheila H.
Sheila H.
Survivor

David A. W.


Survivor

The Long Journey I Never Meant to Take

It was a long hard day; I was tired, stressed like I always am. I had just returned from a banquet at one of the hotels in Clear Lake for some students and mentors from a NASA program I was over seeing. The institute that I work for as Chief Scientist and Associate Director, the National Space Biomedical Research Institute (NSBRI), sponsored it. In my spare time I was a lecturer at two medical schools, Baylor College of Medicine and University of Texas Medical Branch in Galveston. The banquet was lovely and the kids with smiling faces are eager and sometimes can be giddie to actually work for the space agency. I drove in the Honda Hybrid not knowing or imagining that it would be the last time I would be driving for some time. It was the evening of July 14. I got home a little after nine and my own boys were watching an old movie, Back to the Future, one of my favorites. So, I thought that I would watch it with them. Next, I sent a text to my wife, Fay, who was out having a beer with some friends. She texted back that she would come home as soon as the current round was consumed. Next, I put the phone down on my bedside table and walked into the other room with the boys. I leaned over to pet our dog, Lola, then mysteriously tumbled down to the floor. I tried to stand up, but my limbs were on fire. I reacted Iike I drunk, but I had no drop of drink at the banquet. My son Jon came over and tried to help me stand up. I sank back to the floor. I was confused - why couldn’t I stand up? Then boom, flat on my back again. Lola licked my face, and Jon asked if I was all right. I think I rambled, respiration rapid, sweat on my brow and wondered again, breathing heavily, what is wrong? Bad food, at the banquet? Then I realized I couldn’t really talk and that I was paralyzed on the left side. Oh God, could I be having a stroke? I had experienced a mild stroke in 2006, so I know the symptoms (it is very important to know the symptoms of stroke). I heard Jon (or was it Zack?) yelling to call 9-1-1. Then all hell, broke loose. Fay got home, Jon was on the phone with 9-1-1, the dog is barking, flashing lights. I don’t know how long the average EMS response in Pearland is, but this time it was fast. 

By the way, the boys recognized the stroke so quickly thanks to Boy Scouts First Aid training (and how to handle the situation calmly from the Emergency Preparedness Merit Badge). The paramedics checked my blood pressure, blood glucose level and determined that it was probably a stroke like the boys and Fay had told them. They loaded me up in the ambulance, somehow, I hoped, I would see home again. So, we went blazing up 288, lights flashing, siren screaming. I gotta say that was my fastest trip ever up the freeway to the magnificent Texas Medical Center (TMC), and that is the reason I considered to live right next to the TMC. I am at a loss to describe the series of event which happened next, probably I was in a coma for most of it! I have to rely on the memories of my family and friends.

Stroke, at least the ischemic stroke I had, means that blood flow to part of the brain was interrupted; hence, the supply of oxygen and nutrients was cut off to areas of the brain. Cells in the brain will start dying, and if long enough, whole areas of the brain can die. Blood flow in this event was obstructed in the main vessel because of a large clot. Clots that cause strokes have many origins, in my case I have a-fib (atrial fibrillation because of a chronic congenital heart condition). So, one medical revolution for clot break down is TPA (tissue plasminogen activator), the so called “clot-buster.” The quicker TPA is delivered to the clot, the better chance of less tissue death. The devil is in delivery. There isn’t a good way to inject it directly into the clot area. They injected TPA into my arm and then it had to travel to the brain. We waited to see what the TPA did. After 15 minutes (or maybe it was 30 minutes, during this time the doctors kept asking me questions and to do certain things), they were concerned that my condition was worsening instead of getting better. They decided to rush me to OR to do an angioplasty from my femoral artery all the way to my brain to see what was happening at the clot site. Everything went quickly from there. They rushed me up to neurosurgery. I think that they knocked me out with anesthesia. It felt like everything was out of control. I knew I was in the hands of capable surgeon. I saw the words operating room, then got scared, because I worried about my boys and in particular my daughter who was in NYC. As l later told a friend about fear, he said, “Wow, what did you do? Pray?” Just like an atheist in a foxhole, I of no opinion, no atheist lying on OR table. I couldn’t imagine who protected me other than God, of course I prayed.

It is my hope that my stroke will inspire others to take care of themselves, or be it in your hands! Stroke is a type of TBI (traumatic brain injury). According to the Centers for Disease Control, in the United States, 800,000 people have a stroke each year. Another way to put that is to say that every 40 seconds an American has a stroke. The effects can include movement, balance, cognition, and of course speech. I am here to tell you that you can recover and relearn to walk, talk and eat. When you get that the angioplasty through the femoral artery of your leg - you feel powerless! Once they started the anesthesia, I saw things through an anesthesia mask and then lights out. I honestly don’t remember anything really for days after that! I rely on friends and family to recall this part, because for me it is like a dream (or possibly hallucinations?). I talked to my brother, I heard the voices of coworkers. I thought it must be a big deal if all these  people were here. I realized that I had something stuck down my throat. Turns out it was the ventilator.

The TV was turned on the NASA channel, and I was thinking I worked for them, and sad because I figured I had probably worked my last day. Apparently, what I thought was only a couple of days stretched out into more time, what was to become nine days in the ICU. It doesn’t seem that long because for most of it, I was in a drug induced coma so that I wouldn’t fight the ventilator...and no! I did not have an out-of-body experience.

I was uncomfortable because I was feverish from a pneumonia aquired from aspiration and IV-antibiotics were prescribed. Ironically, my research work was with pneumonia, though I had never had it before. I had a raging case of it now, and I’m pleased to report that it is every bit as terrible as I describe it to the medical students at BCM and UTMB during lectures. I am an expert on pneumonia and here I was with a classic case. Pneumonia is an inflammation of the lungs. It was the least of my hurdles. I don’t remember all of the visits by the team of Stroke Neurologists. But after the ventilator was finally removed, they came by and examined me. I couldn’t speak! Then I realized that I couldn’t swallow. Even my saliva could choke me. I couldn’t walk. I was paralyzed on the left side. I was terribly shocked though, but family was in the room so I tried to remain calm. Was this the way it was going to be? The boys and Fay insist we watch the Crossfit Games on ESPN2, but I couldn’t make it clear that it depressed me too much to watch the fittest individuals do what I could do only days ago, but I apparently could not do that. Physical Therapy came, and I felt like I was sunk but set goals. The first session, I couldn’t even sit up without assistance. I suffered a setback, a seizure. Turns out that the stroke damage to the right side brain lead to instability in that area and resulted in the seizure. The seizure was very scary, I remember Fay being there but not really. I couldn’t speak and I was trembling. 

Walking seemed like an impossible goal because I was too weak. I was tired. My brother Mike and good friend (and sort of like a brother) Doug told me, “Don’t lose hope.” They’d seen my determination to conquer other obstacles in the past. It made all the difference. They reminded me that I am a strong and stubborn person. I have tackled other problems just as formidable.  For goodness sake, I plodded my way to a PhD in a hard science. The Physical Therapist told me the same thing.

Finally, I moved to neuro critical care and away from the noise and chaos of the neuro ICU. I had many more visitors, including my family, and received flowers and get well cards. I couldn’t swallow food, and the doctors didn’t want to leave the feeding tube in my nose. I had coughed it up twice already. They put in a peg tube instead of the feeding tube running down my nose and back of my throat into my stomach. The tube goes through a button-hole from inside the stomach to the outside so nutrition and pills can be directed to the stomach without swallowing.

Of course everybody is encouraging, but they haven’t the blow of realizing, understanding you just learned you are essentially helpless. I mean helpless: eat through a tube of seemingly mysterious brownish liquid that is dripping into your stomach and giving you reflux, indigestion and horror of diarrhea (when you can’t get up to take care of yourself). Yes, very encouraging, but different fight. You have to fight your mind, because what the medical staff (and your family) is telling what you must do is take nutrients, although your mind is telling you: 1) do it and vomit or have diarrhea (which would you pick?); 2) you are sure they right. In end, I let feeding formula continue and concentrated on learning to swallow by doing exercises given by the speech therapist. Before I could even get anything by mouth instead of feeding tube I had to learn to swallow and pass a test given by the speech therapist. With the help of the speech therapist, exercises she assigned to me, and Ross coming in and making me do them with him, I surprised the therapist and passed the test for thickened liquids and pureed foods before I left the hospital three weeks after the stroke. Unfortunately, until I started to gain weight and could swallow pills, they were determined to leave the feeding tube called a peg tube in my stomach. The pureed food was some of the most God-awful food with a pasty texture (even a baby would turn its nose up at it). I never saw any documented mention of any foods tasting bad after a stroke, but I can tell you that, for example, garlic and smell of coffee was repulsive to me. Still fought my mind and ate in an attempt to get better and stronger.

I also got a little lesson in humility one day. A big leap was when I got a toilet chair. I was so constipated (from the liquid diet), it was a joy each time I could successfully go (yep! Stroke causes an inability to frequency to “go”). The procedure was to call an orderly and they are supposed to aid patient in transferring to the chair and watch the patient so they do not fall off this perch. Well, the orderly didn’t stay and yea, I fell off the toilet seat. Since I couldn’t get up and I couldn’t reach the call button, I lay there on the floor screaming, “HELP, HELP!”  ‘til someone came.  Then I realized that we all need a little help.

Little by little, life improved. I could sit in the wheel chair which meant that I was mobile (and could even go outside when boys helped me) and sit in a shower chair and have a shower (but it was so cold to me)! Ironically, alas during some of the hot days of August, I felt like was about to freeze in my room. The stroke had caused some sort of problem with my ability to feel warm. All this time, I had been going to speech, physical and occupational therapies. Exhausting work, but I had a goal - to get out of the “skilled” nursing facility (an oxymoron if there ever was one). PT was the easiest to graduate from. Thanks to CrossFit, I was in good physical condition before I had the stroke. The left and right sides of my body quickly learned to balance themselves out. So, I could do more of the required moves to get me out of there: balance, of course sitting and standing, squatting and kicking the soccer ball. I was eager to start going to gym. Luckily, indeed thankfully, I was able to soon learn to walk and could strengthen my right side.

Of all my challenges, the one that was the toughest was the ability to talk so be understood. I realized pretty soon, gone were smart-ass quick witted interjections during conversations. I thought folks would not see that I was still smart and quick in my brain. When I finally learned to talk it was slow, halted, there were a lot of folks who I right away could tell wrote me off. They don’t know that I once made my living by lecturing, so I know how to give speeches. Indeed, as school board president, I often spoke in front of crowds. As a lecturer, I spoke to auditoriums full of people. I lectured in Oxford, London, Copenhagan, Seville and many U.S. universities. I realize that now those days are over, and I rely on writing to communicate.

The people who have pulled through for me are my friends and therapists, and they are saints. My wife, who has proven her love through all of this, slept on the floor of the hospital. She didn’t want to leave the hospital until I was out of ICU. After that, following the advice of our doctor, she got up most days at 4:15 a.m. and went to our CF box which is just off the beltway in Pearland. The many friends, the trainers, the participants, who she say support her obvious love of CrossFit. AND course the boys were determined that I wouldn’t die and have gone out of their way to make sure I get to rehab and the CF box. The boys coach me when I work out. I have discovered much changed, that is another problem a CrossFitter has to address with a stroke.  Indeed, any traumatic injury in an otherwise physically fit individual is nagging pain in any joint. For instance, my shoulder had just started to twinge a few nights before the stroke. I did 50 pullups (not a lot, but damn much for a 51-year-old man). It hurt a little bit (just a twinge). I like everyone else who is busy thought, “I really need to stretch this out.” I was meaning to stretch it a bit. Well, as it turns out, the body given time (i.e. when you lay flat like I was for 9-10 days) starts to heal itself. If the tissue is torn then lays in one position for 9-10 days, an adhesion can build and freeze your joint. This is called “adhesive capsulitis.” The cure is to rotate and stretch the joint - but it hurts! Solution is simple, visit an orthopedic surgeon and he will inject cortisone.  But, wow it is painful - the good news, there is immediate relief of some of the joint pain - easy to see why athletes who have a shot are able to play. I am ready to relearn to do pullups, but surgeon cautioned me to be careful. I could tear the rotator cuff. The last thing I want to do, of course, is to go back to the hospital for a surgery and undo all the rehab I have undergone. Happy that the shoulder is coming along fine, thanks to a good strength coach - CHAD! ...and my on going battle with GOUT! I have battled gout for years.

When you lie in a hospital bed your muscles start breaking down, so your body has to process the proteins. During the time I was on the feeding tube I lost 20 pounds. In fact, every doctor I have seen so far from the neurologist, to orthopedist, the cardiologist, has said something like, “You should have died in July.” Luckily, it has caused us to take a close look at a living will, as alas, to let your significant other know what to order the doctors to do to me if brain dead. Now, I have to face a much bigger task, i.e. decide on my future. How am I going to go on with my profession or even if I can go forward with it. I can do detailed discussion on interactive evaluate science (e.g. I am on the committee for protection of human subjects (astronauts) at JSC. Thankfully, I still write my thoughts (you be judge of how my writing is doing). I can’t type. So, I am left at this fork in the road. I spent 30 years of cramming into my brain lots of facts about science and learned to speak in public and lecture. So, I quite literally don’t know what else to do. I hope I can contribute to the space program or otherwise to science. IF not, I hope I can contribute to inspire other stroke victims to keep trying. I am grateful that I can inspire other people if that happens, because there is not a lot left that I can do to help society in my previous life as a scientist.

Read part II of David's story - A long and winding road to recovery

 



 

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Display of the Faces of Stroke stories does not imply National Stroke Association's endorsement of any product, treatment, service or entity. National Stroke Association strongly recommends that people ask a healthcare professional about diagnosis and treatment questions before using any product, treatment or service. The views expressed through the stories reflect those of the authors and do not reflect the opinion of National Stroke Association.

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