My name is Don Freeman. My lovely wife Stacy and myself would like to share the worst months of our lives with you.
I am a 41-year-old male, married with three sons. I had a splenectomy in 1990 due to Idiopathic thrombocytopenic purport (ITP); a lack of platelets which lead to how I became a victim of pneumococcal bacterial meningitis with a secondary infection of Sepsis. No one warned us of being a prime candidate for this disease. I was in relatively good physical shape, a non-drinker, who smoked half a pack a day, and was pretty active. What I remember happing that weekend and what really happened are two different things. I had some pretty bizarre dreams. I am unable to tell which dreams occurred that weekend and which occurred during the coma. These dreams seem to etch themselves deeply in my memories and are disturbing at times.
I do not remember the weekend I got sick and I spent the first 3 weeks of treatment in a coma so my wife has recanted the story:
It all seemed to start on Friday Dec. 15, 2000. Don came home from work and said he felt like he had a cold coming on. I went to the store to get him some Triaminic Chest Medication, he took it and felt better. When I got up Saturday to go to work Don was feeling worse again. He was going to take some medication and lie down. When I got home later that afternoon, I found Don still in bed, worse than when I left him. He told me he felt he had the flu, and from the symptoms I thought so as well. He was vomiting, had a headache, and was running a temperature. He hadn’t been able to keep anything down. I made him some soup broth and he couldn’t keep it down. He started to feel real cold and decided to go back to bed. I rubbed his back for a while and he told me he had never felt this bad before. He fell asleep and I thought he was finally getting some rest. I woke up around 5am on Sunday Dec. 17th, and Don was not in bed. I went out and found him sitting in our recliner. He said he felt really bad and was feeling so cold he was getting numb. I asked why he didn’t wake me up and he said he didn’t have the energy to come get me or even to yell. At this point I told Don he would have to go to Urgent Care. I got out the yellow pages and had to turn on the light in order to see which one to go to. I looked at Don and realized that he had to go to the ER. His skin was so white, he really had no color to his skin, other than the big red dots all over his face.
I just can’t explain how white he was. The same color of a white piece of paper. I am not kidding! I told Don that we would have to go to the ER instead, that he didn’t look good. I helped Don get dressed, then helped him into my van. Don complained all the way there of being cold. I turned on the heater, but this did not seem to help.
When we got to the hospital I checked him in, and explained he was cold. The ER nurse asked if he was having trouble breathing. I told him that he was. The ER nurse said that he was probably hyperventilating, but he would bring out a warm blanket for him. The ER nurse brought out the blanket, and when he took a look at Don he then decided to go ahead and bring him on back to the exam area. They took him back and started running test. The ER nurse came out and told me that he thought it was another disease, one that smokers get. I asked, “All this because of smoking?” He said yes, he had seen it many times before. It made me feel really bad about ourselves.
I was asked to leave the ER exam room while they took him down for x-rays. I went out and waited. They called me back about fifteen minutes later. I went in and asked Don how he was doing. He told me his necklace was on his lap and he was worried he would lose it. I took it off his lap, and put it around my neck. I looked down at Don to tell him I had it, and it appeared he was sleeping. I was then asked to help Don give a urine sample. I couldn’t wake him up to do it. The ER nurse then told me he would have to be catheterized if I couldn’t wake him up. When they catheterized Don he didn’t move, not at all. That’s when I knew he was in trouble. I’m a Medical Assistant, I know how much this hurts, and he never moved. Now the ER Nurse had to come in and tell me he was wrong. It was not due to smoking, he had Sepsis. They didn’t know how or why yet, but that is what came out of the initial testing. They then told me they would be moving him to ICU and that he was unresponsive. He would probably need a ventilator. They moved him to ICU and I went home to do what needed to be done.
I was so blown away. I thought I was bringing him in for the flu or pneumonia. I couldn’t figure how things got so out of hand. As I said before, I was a Medical Assistant and I know that sepsis kills more often than not. When I returned to the hospital that night I found Don on a ventilator. He was now considered contagious and we had to be gloved and masked to go in his room. At this point the physician asked me some more questions about when Don had Idiopathic thrombocytopenic purport (ITP). They thought he either had ITP or Pneumococcal Meningitis. They could not do a spinal tap (lumbar puncture) because Dons platelets were not functioning at this time. He was at high risk for bleeding. They had a Hematologist come in and exam Don, and run some test. It was determined that it was not ITP. It was meningitis, with the secondary infection of sepsis. I was then asked if I would sign a ‘No Code’ on Don. I said, “No, he would want to live if given a choice.” I then went home. I went in on Monday morning to find Don in a ‘critical stable’ state. He was now getting dialysis and he was purple and black all over his body. He had 15 IV’s running. I asked the Doctor what was going on and what were his chances.
The Doctor would not look me in the eye, but told me the next 36 hours were critical. I thought the last 24 were. On Tuesday a Nurse suggested to the doctor about putting Don in the Hyperbaric Chamber to try and help Dons skin get the oxygen it needed to hopefully heal. So, Don then started on Hyperbaric treatments once a day for about 10 days. It saved his legs, ankles, and part of his feet. It also saved his nose and hands. Don was in a coma for three weeks, many CT scans, x-rays and blood test were done. He was also put in a blind study for a new medication to help fight the effects on extremities and organs from sepsis.
We do not know if he actually received the medication or not and will not find out for about two years, but with how fast his body did recover we feel he did. Don had many bleeding problems while in the coma. His platelets were not forming or he was forming to many, his INR was very unpredictable. They had to put an umbrella catheter in his groin so that the blood clots that were forming would not go up to his brain, heart or lungs. He did have a very small clot in his lungs, but they felt with all the increasing and decreasing of the heparin that the clot went away.
He was put on a special floating, rotating air mattress, so that more clots would not form. They were also afraid to turn him. They were afraid the pressure would form a blood clot. Don also had massive swelling throughout his whole body, even his eyes. He stayed that way for about a week and a half. The nurses and doctors never really expected him to wake up. They didn’t expect him to make it past the first three days. It’s funny, even when they were “waking” Don up they still told me that it didn’t mean he was okay. I don’t think they knew what to expect. The doctor told Don that he had been knocking on Heavens door and God gave him a second chance.
Don: I’m sorry I don’t remember everything and in the correct order. I remember waking up in an unfamiliar place. The television was on. I remember I couldn’t talk. The ventilator tube was still in at that point. I woke again and my throat was clear, but I still had barely a voice. The nurses ask me if I knew where I was. I told her either Kiser or Grossmont Hospital. She asked me if I knew the date. I said, “December 19th, maybe.” I was blown away when she said “Sorry darling, you’ve been in a coma for 3 weeks. It’s January 7th.” I couldn’t believe my ears. I was very disorientated and weak.
My little IC room was full of people doing this and that, just busy as a beehive. I was taking breathing treatments, and just a borage of different stuff being done to me. The doctor came in and introduced himself to me. He sat on the bed next to me and told me I had been knocking on heaven’s door. This was how serious the situation had been. It really didn’t sink in until a later time. He pointed out my toes to me. They look like I had been playing in the snow barefoot for weeks. The toes where black as night. I then noticed my hands had this weird crust incasing them. I also had these little scabs all over my arms and legs (sepsis). The doctor told me they were going to have to do something about the toes and feet. He explained to me about amputating my feet. I felt relieved that they weren’t going to take the whole leg. Everyone told me I was a miracle, from my family to the ICU nurses. My recovery was beginning and I had realized I was whittled down to nothing. I couldn’t even hold a spoon or fork at the beginning. I got real spiritual at this point. What was God’s plan for me? Why was I spared? I remember seeing my wife, her trying to tell me what happened and what was going on. I acknowledge her telling me, but I couldn’t comprehend what she was telling me. I probably asked the same question’s over and over and never understood the answer. My wife had placed a family photo in my ICU booth for all to see I was part of a family. With three sons at home ages 2, 6 14; just to give the nurse and doctor’s a view of the human side of our lives. I was doing okay in ICU for the first couple of days. I was still getting dialysis and CT scans every other day. A daily ritual of chest x-rays, breathing treatments and IV’s galore. I was privilege to meet some wonderful men of God while in ICU. The staff in ICU was outstanding. I had a lot of outdoor activities in common with the nurses. I also had lots of visitors, family and friends. This always picked up my spirits.
Then came a point when I was ready to leave. I wanted to go home and see my kids. I got nasty with the nurses, and called my wife with their cell phone at about 4:00 a.m. and told her to come get me, ” I’m ready to come home.” I started undoing sensors and plastic hoses that were running everywhere off of me. I couldn’t get any sleep in ICU, the lights were always on and the activity going on in the ward was too much for me to sleep through. I knew they weren’t going to start the amputations for another week or so. I begged the doctor to let me go and promised I would be right back when they were ready to operate. I remained in ICU for a few more days until my next fit, then I got my own room on a regular patient’s floor. I was ill with in an hour of being in my own room. This continued off and on during the two separate amputations of all my toes and half my left foot. After the second amputation I was ill all the time.
I had the hourly regiment of Vitals and the daily rituals of breathing treatments and chest x-rays. I began not being able to keep anything down. This went on for weeks as they searched for the cause with upper GI’s, belly sonograms, etc.
I was losing weight and strength very quickly. I had dropped 40 pounds within a month and a half. It was then that I really realized just how bad I was and that this was really happening to me. I couldn’t just get up and walk away from all this. It was really happening to me. I was diagnosed with pancreatitis. They also found my IV “pick line” was infected, causing the illness. They removed the one in my arm, and placed a new one at my upper chest. This cleared up the constant vomiting immediately. I was able to eat again. The amputations went off without a hitch. The staple removing, and the drain lines were pretty painful to remove. I received a six-day antibiotic treatment that was accidentally administered incorrectly and almost killed me. I was able to eat regular food now. The day to go home was approaching. After I finished the antibiotic I was ready to go home. They then decided I needed a flu and pneumonia shot before I left. They gave it to me the day before I was to be discharged and I got sick. I tried not to show it so I could go home, but I wasn’t myself because of the shots. I got discharged and the fresh air and wind overcame me as I went outside. I started to tear up, everything looked so fresh. I was in a hospital room going on two months… I was going home if I had to crawl. We arrived at my house. My kind friend, Dave, had built a ramp up my stairs so I could easily get into my house. Once I was home, I was relieved but very surprised just how weak and dehydrated I was. I didn’t have the strength or flexibility to clean myself after a bowel movement. This was the point I wanted to be normal again. I wept because of my condition. I couldn’t walk, stand, or play with my children. I was thin as a rail and I couldn’t be intimate with my wife. Slowly I started to gain weight. The glands in my neck blew up as big as baseballs twice while I was eating. I had spontaneous dizzy spells. They were worse when I sat up. I was always dreaming of running and walking. I returned from a doctor’s visit and had to slid board from my seat to my wheelchair. I then realized I could stand straight up. I was so happy inside. I practiced and then eventually walked across my living room holding my wheelchair. I did this at a later time to surprise my wife. My 6-year-old told me I was walking like a real man. I was well on the way to recovery. The dizzy spells were almost gone. I could putt around the house for a little while. The doctor said to start practicing walking. I switched medical services to the VA due to no insurance. I am almost done with the follow up visits. They have returned me to my wheelchair twice now for foot sores. I am working again. It took me 7 months to return to work on a very part time basis. I am back to proper health and am spreading the word to anyone I know that has had a splenectomy. I tell them to get the vaccine for this killer disease. Meningitis is very serious. If that doesn’t kill you, the sepsis will.
I am a very lucky man. I have been given the chance to spend time with my boys again. I feel terrible for scaring the hell out of my wife, children, family and friends. I never imagined this disease or anything as aggressive as this every happening to me, or anyone I know. Please if you have kids get them the vaccine. If you have a child under 5 please get them the Previa shot. If you have a college, high school student, or have no spleen get the vaccine, Menomonee. If I got this instead of a child, I would do it again.
My life was pretty much back to normal. I was working almost full days again. My feet were still giving me problems after a long day. I had put weight back on and I can pretty much walk around a grocery store.
I was at work about a month ago and I was eating lunch. My next memory was the ICU at Scripps Hospital in Chula Vista. Doctors removed the ventilator and told me I had suffered a Grand Mal Seizure the day before. I could only think “What?” ICU and ventilators again! I then noticed I was fully restrained. They took off the restraints and my lovely wife Stacy started explaining what had happened. I never even knew anything had happened to me. I do not remember anything from the seizure. I was at work and then I woke up in the hospital.
Apparently, after I finished my lunch at work, my best friend/co-worker said I started to fall backwards out of my chair. He caught me and said my eyes were rolled back in my head. I started flexing my arms and my whole body was shaking. My staff called 911 immediately and then called my wife. She couldn’t believe what she was hearing on the phone, then she heard the ambulances coming in the background. I am then told I tried to assault my friend and take on the paramedics that arrived to help me. They calmed me down enough to get me in the ambulance and in route to the hospital where I promptly engaged the ER staff. They restrained me and put me out. I received the full battery of screens and cat scans. I also developed pneumonia due to a piece of vomit lodged in my lung. The medical staff was informed of my bout with pneumococcal meningitis. When the doctor received the medical records from the hospital where I was first diagnosed, he said he was very impressed. I remained in ICU for a few more days. I received breathing treatments again and IV’s galore. They performed an MRI on my brain. It came back showing only a minor injury from years ago. Everything looked good. I was sent to the regular patient ward to deal with the pneumonia and my recovery went smooth. I was walking around the ward in a few days. The staff couldn’t say what triggered the seizure. I feel it was my brain settling back down after my bout with near death. I spent a week or so at home getting up to speed. It felt like a train had ran me over. Every muscle in my body was sore. I returned to work 3/4 days and the only residual thing I notice is the occasional memory lapse. I take some brain medications twice a day and they have balanced the dosage according to my most recent blood test. I always felt, even though I had a 6-month recovery from meningitis, that the recovery was going a bit too smooth. As I was reduced to literally nothing, I was back to almost full speed pretty quickly. I could feel that it wasn’t over yet. I know I am a very fortunate man to even have the hands to type this with. I just wanted to share with you what else this aggressive disease has done.
P.S. I have had no other seizures or episodes since the first one… Thank you Jesus!