by Molly B Cox
About two years ago, I was diagnosed with equine protozoal myeloencephalitis, an often-fatal horsey disease. Thanks to some expensive medication and a lot of exercise to strengthen the muscles, I am alive and sound today.
I have always been a selfless, caring horse (modest, too); but now I am even more sensitive to the challenges faced by others.
About the time I was recovering, one of the council’s ardent volunteers was beginning a harrowing journey. Jane Garnett is a lifetime Girl Scout; she was a Girl Scout Brownie in South Charleston, WV, for three years and has been an adult volunteer in Botetourt County for 30 years. She has three children — two boys and a girl — and four grandchildren. Her daughter has her Gold Award!
I asked Jane if she would share her story on my blog. So she did.
Jane Garnett, at the Roanoke “Boots & Bowties” gala
I thought I had a cold. I had been taking Nyquil and resting. Sunday morning, February 9, 2014, I woke up with a fever of 103. My husband, David, took me — still dressed in my pajamas — to Velocity Care. I was seen right away by the doctor, who after placing an oxygen mask on me, immediately called an ambulance. I remember being loaded into the ambulance, the sirens blaring, and the attendant asking questions. Then, I passed out.
My next memory was four weeks later, seeing my daughter over my hospital bed saying, “Mom, you’ve been really sick, but you’re going to be all right.” Four weeks! I had missed two of my three children’s birthdays. What happened?
Yes, I was awake, confused, and in tremendous pain. I couldn’t talk, I couldn’t even roll over, and my vision was blurry. IVs were in both arms, an IV in my leg, a Foley catheter, and a rectal tube. Doctors paraded their medical students into my room. I tried to decipher what they were saying. No one addressed me. Maybe they told me what was going on, but it was lost in the confusion of medications, hallucinations, and critical illness. I did hear the word “critical” many times. I wondered why I was in El Paso, Texas, why my nurses were on roller skates, and why Elton John visited me — all hallucinations.
So what did happen?
H1N1 influenza and double pneumonia. I was admitted to Carilion Roanoke Memorial Hospital from the ER to ICU. I was placed on a ventilator and put into a medically induced coma. My family had to wear gowns and masks to see me, as I was in isolation. Then, February 18, nine days later, I crashed.
February 18, I developed a blood clot in my leg. That led to a moderate pulmonary embolism; the clot traveled from my leg through my heart into my lungs. Entering through my neck, then my heart, and into my lungs, a Greenfield filter and catheter were placed to infuse a clot buster medication. My family was called to say good-bye to me. My husband was asked to sign a “do not resuscitate” form (he declined). The procedure had caused me to crash, and I had to be shocked twice. This procedure caused my kidneys to fail, requiring kidney dialysis. A port was placed in my upper right chest for dialysis.
February 28, the ventilator was removed and I had a tracheostomy. This is why I couldn’t speak. I also had a belly hematoma requiring a blood transfusion. During the CT scan of my abdomen, the doctors found an ovarian cyst unrelated to my illness. I was too weak for surgery at this time. This was also the first day the doctor told my family that I would get better. My family had been through 19 days of uncertainty.
March 5, I woke up! I remember seeing my family. I was still confused, but I saw faces I knew! My husband explained my legs and right arm were paralyzed. The doctors didn’t know why. I was terrified. I must have had a stroke. My right arm was curled up on my chest. But I was reassured that the MRI did not show signs of a stroke. The doctor asked me to wiggle my toes and I could! I knew that was a good sign. My kidneys were “jump started” and began working on their own. The port is still in place just in case I should need it.
While I could move my left arm, it was extremely weak. I’m right-handed, but I tried to write with my left hand. I had to hold a marker fisted like a two-year-old. I had little control. But I tried. I worked with a picture board, pointing to images such as pain, eyeglasses, yes/no. At this time, I was given my glasses and while my vision was somewhat blurry, I could see. I was too weak to change the channel on the TV, but I really didn’t care to watch anything. Although I had to chuckle to myself when my nurse, trying to make me comfortable, put on a cooking show. I was being fed through a nasal tube and she turns on a cooking show! I could read, but I couldn’t remember all four of my grandchildren’s names.
I started physical therapy and occupational therapy while in ICU. They would get me to a sitting position on the side of the bed. The pain was horrible, but so is the fear. During one of my many MRIs, the staff placed the emergency button in my paralyzed hand. I can’t protest, because I can’t talk. Panic sets in during the MRI and I am trapped! I could hear the MRI staff laughing!! I am living a nightmare.
March 7, I was moved from ICU to PCU, Progressive Care Unit. I still had the tracheostomy, so I couldn’t talk. I used a blank white board to try to communicate. Writing with a weak left hand, I would try to say pain, bedpan, etc. It was a difficult process. One nurse became frustrated with me and took the white board away saying it was “messy.” So for an entire night and day, I had no means of communication until my family arrived that evening. That situation was quickly rectified, thanks to my daughter.
I coughed nearly all the time. They gave me a suction tool to suck up the sputum. The nurses also suctioned my trachea, a painful process, but it did help with my breathing. After a few days, the doctor downsized my tracheostomy tube. Another painful and frightening process — no one wants their airway messed with. While lying in bed, I worked to move my fingers. What an accomplishment when I could touch my index finger to my thumb!
March 12, the doctor downsized my tracheostomy tube with a tracheostomy button. I had to cover the button to speak, but I could speak! My voice was very weak, but now I could communicate!! I’m still being fed with a nasal tube and the liquid makes me gag every time. How much I wanted a cold glass of water. However, at this time, I cannot swallow correctly. Swallowing tests show my body cannot tell if liquids/foods are going into my stomach or my lungs.
March 13, my hairdresser makes a special trip to the hospital to wash and trim my hair. How good that feels! I can’t sit up, but she is able to cut it while I’m lying down. She refuses to take any money.
March 14, the feeding tube is removed. I’m allowed pureed foods and thickened liquids. My swallowing is still unsure. I try to eat, but food has no taste and certainly isn’t visually appetizing. I mostly want watermelon and a cold glass of water. I’m still working with physical therapy just to sit up. I have been able to be moved to a chair. The pain is still nearly unbearable. Over the next few days, I am able to use a bed pan, a milestone since I had been incontinent, a horrible feeling not to be able to control your bowels. It will be a slow process back to normal.
March 17, I am transferred to Carilion Rehab. I am so apprehensive of this move. By this time, PTSD has set in. My critical care doctor understands saying, “You have fought your own war.” Before I leave, one of the doctors surprises me with a cup of watermelon. My first real food since February 8. It tasted wonderful. I thanked her for saving my life.
I arrived at rehab. I still cannot dress myself, sit up without help, bathe myself without help, and go to the bathroom without help. I eat with my left hand and nearly always spill food on myself.
I start my rehab almost immediately. The first day, I am helped in the shower (I still cannot walk), I am helped to get dress (nice, since I’ve been living in a hospital gown since February 9), and I am helped into a wheelchair (not easy since I am so weak and unable to walk). I spend at least three hours in the gym. The physical therapists get me up on the parallel bars and, with great effort, I walk four steps. Four steps! I cry a little. For the first time, I think maybe I will be able to walk again. Occupational therapy works with my arms and hands. I can move my right arm somewhat, but it’s very weak and it’s painful. Speech Language Therapists help me with exercises to re-learn how to swallow. I fail my first swallow test. I still cannot tell when liquids and foods are going into my lungs. Because of this, I am limited in dietary selections.
Back in my room, I lie in bed and do the exercises each therapist has given me. It’s so hard and so painful, but I want to regain as much as I can. I watch a little TV. I can now change channels by pushing the remote with my pinkie finger.
Each day brings more challenges. I walk a little more each day. I have the therapist write the footage on a white board so I can see my progress. My hands are getting stronger with the exercises. I can partially dress myself, needing less help each day. After about a week, I still cannot get out bed by myself, but once in the wheelchair I remain there most of the day. I can wheel myself to the window and watch people in downtown Roanoke.
March 20, I pass my swallowing test. I can now have that glorious glass of ice water! No more thickened liquids and no pureed foods!! I also scratched my nose with my right hand for the first time.
March 22, David takes me outdoors for a while. I’m still in a wheelchair, but I feel the sun for the first time since February 9, except for transports between hospitals for tests.
March 23, I begin using a walker — only a few steps at first. I’m still very weak and I have a great fear of falling. Each day, I walk a little further. My arm is moving better, but my hands are so stiff. I work each day to strengthen them. I try to keep a positive attitude and joke with the staff. But sometimes I do break down. I can’t be Pollyanna all the time.
March 27, the surgeon removes the vas-cath port that was used for dialysis. It takes about an hour; I have three stitches, and I must lie still for an hour. I’m so glad it’s gone. My tracheostomy stoma is healing nicely. The nurses change the bandage frequently.
March 28, I sign my name for the first time with my right hand. I begin practicing writing my letters and numbers.
March 29, a set-back. I have to go back on oxygen. What a nuisance to be tethered to an oxygen tank. Around this time, the staff meets with David to set up my home equipment. I’ll need a wheelchair ramp to get into my house, rails on the toilet, a tub transfer seat for bathing, and even little details such as removing throw rugs that could trip me and boarding the dog so she is not underfoot. David is taking four weeks of vacation to care for me at home.
April 4, discharge! I am so happy to be going home! I still cannot walk but a few steps, and someone has to help me from a sitting to a standing position. I come home in wheelchair and on oxygen, but I’m HOME!!
Over the course of the next four weeks, David helps me walk — using the walker — bathe, and dress. As time goes on, I have become more independent to care for myself. Home Health comes about three times a week to check my blood pressure, take blood, and help with my therapy.
Now, 10 months later, I no longer have Home Health coming by. I can cook, clean, go up and down stairs; I can use the sewing machine, drive my car, and even paint my fingernails. I still pace myself as I get tired easily. I still struggle with PTSD, but it is getting better. I no longer have nightmares about being hospitalized and being poked and prodded everywhere, shots in my arm, in my rump, and in my stomach. No more IVs, feeding tubes, or assisted oxygen. I did lose a good deal of hair due to the severity of my illness, medications, and anesthesia. It is now growing back – curly, no less!
I am seeing an oncologist for the ovarian cyst. I’ve had two ultrasounds since I was hospitalized. At the moment, the cyst is stable, but it will require surgery once I am stronger.
I had not had the flu for nearly 30 years, and had not received a flu shot for 25 years. But I sure did get a flu shot and a pneumonia shot this year! After all, I thought I just had a cold.