Allen Schuman

My name is Allen Schuman and I am a survivor of Necrotizing Fasciitis (NF). I survived this deadly disease after the doctors gave me less than a 3% chance of surviving NF. I would like to share with you and other survivors of this disease my thoughts and my family thoughts and how it effected all of our lives. Allen Schuman 9459 Ruffner Ave North Hills, CA 91343 aschuman@socal.rr.com Allen's Recollections of Necrotizing Fasciitis It started rather suddenly, one day I was feeling fine and the next day I am in the emergency room (ER) at the hospital not quite sure what am wrong. I had a sore throat and my breathing was sallow. Maxine (my wife) notices some redness around my neck. She called our doctor and described the symptoms. He advised her to get me into ER at the Encino-Tarzana Regional Medical Center. I remember a nurse taking me into this room and from that point on I do not remember anything until I woke up in intensive care unit (ICU) three weeks later. Most the information regarding my multiple surgeries came from my family who described what the doctors had to do to save my life. My sons, brothers and their wife's all came to the hospital to give support to my wife. For that I will always be grateful to my entire family. My wife was by my side every moment reminding me of our promise to each other "No One Leaves, No One Quiets". Both of my sons picked up the responsibility of running the house and were also by my side every moment. For this I will always be grateful to my boys. The ER doctor (Dr. Bell) was the first to examine me and immediately diagnose the problem. He said that I had necrotizing Fasciitis, better known as flesh-killing bacteria. He immediately mobilized the following doctors: Dr. Kerner (Ear, Nose and Throat Specialist), Dr. Khaw (Disease Specialist), Dr. Chandra (General Surgery) and Dr. Kasnitz (Pulmonary Specialist). From what I have been told by the doctors, my wife and family, I was rushed into surgery within a few hours after arriving in ER. Dr. Kerner was the first to operate on me because all the doctors felt that was where the bacteria had started. After Dr. Kerner had clean the area around my neck and was sure that the bacteria was no longer in that area he hooked me up to a ventilator. All the doctors were concern because the bacteria were growing at very rapped rate. My blood pressure was so low the doctors were unable to draw blood from me. My lungs started filling up and my heart rate was dropping. After the doctors consulted with each other it was decided that Dr. Chandra would perform the operation which would include making five cuts on my chest and not remove the skin, but just fold the skin back while they started to kill the bacteria by letting the air and washing the area with medicine. This process went on for two and half weeks. My wife told me that I was awake during that time but I do not remember any of this because the doctors had me drug so I would not remember the pain. At the end of the two and half weeks Dr. Chandra had folded the skin back with over 200 stitches. By now I had become fully awake and found myself in Intensive Care. Although I had many questions I was unable to speak as I was hooked up to a ventilator, which was helping me breath. At one point during the two and half weeks I had am out of body experience in which my nephew (Ken) came to me. We did not speak any words, but he just smiled at me, as if to say "Uncle Allen you are going to be all right". I also had another experience during that same period. During this experience I found myself on a train that was going up to the sky. I was unable to move and there were people around me in some sort of uniform. I try to move and call out for help, but was unable too. At the time I was not sure were the train was going, but eventually I found myself back on earth. Dr. Earl Schuman (My Brother) Recollections of Allen's Necrotizing Fasciitis I have seen and treated many cases of necrotizing Fasciitis but never appreciated its ferocity until I experienced it with Allen. It remains amazing to me that we were all having dinner together at the Hunan Pearl restaurant on Friday night (Dec 27, 2002) and by Monday night Allen was on full life support with this deadly disease. As Allen recounted to me he began to feel ill on Saturday with fever and feeling weak. Maxine noted that he took 2 naps that day both over 2 hours. He needed to rest while walking to the gate for his flight home from Portland. On Sunday he had a sore throat and felt like there was a pimple on his right neck, but nothing was visible. Maxine called the doctor who prescribed antibiotics. Later that day he felt slightly better, but was still weak with a sore throat. There was redness on his right neck. Sunday night he had trouble breathing and tried to sleep in a chair. Monday morning he was very weak and Maxine called his doctor. He was then taken to Encino-Tarzana hospital. The ER doctor recognized the problem and with Dr. Cole, put together a team of physicians to battle this overwhelming disease. There was a general surgeon, ENT surgeon, Infectious Disease, Cardiologist, pulmonologist, and a nephrologist. All were needed. Allen body systems were shutting down due to the toxin from the infection (Strep). Within 2-3 hours of being called, Marvin and Bill were at the hospital and stayed by Allen and/or Maxine side for the next few days. They were helpful, supportive, communicative, and showed the loving support that is a hallmark of the Schuman family. Later on Monday he was taken to the operating room. He was on 3 drugs, running wide open, to keep a blood pressure of only 60. Undergoing surgery in this condition was very risky but clearly needed. While trying to keep him alive they opened his neck, made multiple incisions on his chest to clean out the infection and performed a tracheotomy. That night his blood pressure remained low, his kidneys were failing, his clotting mechanism was not working properly, and his lungs were filling with fluid. The outcome looked grim. I was in frequent contact with Marvin and Bill as well as Richard. We made plans to catch the first plane to Burbank on Tuesday AM. With the lack of progress through the evening I became increasingly worried. Knowing the chance of getting through this was slim, I feared each phone call. Around 11 PM Bill called to tell me that Allen's status was worse. He did not have any specifics, but knew the doctors and nurses were constantly attending to Allen with no encouraging reports. I tried to sleep, knowing the next call would be Bill telling me Allen was gone. Finally, the alarm clock sounded (about 4:30am) and I got ready to go pick up Richard. We had a quiet flight and went immediately to the hospital. I was able to see Allen and assess his status for myself. He was on 6 or 7 medications simultaneously to support his blood pressure, treat the infection, supply adequate fluid to his body (the toxin causes the blood vessels to dilate and act like a sieve, so lots of fluid is needed to fill up this leaking jar), strengthen his heart and keep him comfortable while his wounds improve and the respirator breathes for him. The one good bit of news was that his kidney function (creatinine of 3.4 on Monday) had improved (a normal 1.4). With multiple visits during the day we could see his vital signs wax and wane. I met some of his doctors, who were kind, respectful of Allen and willing to explain his lab and x-ray findings to me. I could then relay my interpretation to the rest of the family. I tried not to think of the fact that only 10-20% of patients with multi-system organ failure survive. Allen made it through another day with no worsening of his blood pressure or signs of infection. Many family members arrived and we had a large group go out to dinner. On Wednesday Allen had a dressing change that I watched. His tissues were swollen with fluid (he gained 20 pounds in 2 days) and were bulging through the skin, but the underlying muscle was pink and healthy, as was all of the skin. It had been expected that some of the skin would die due to poor blood supply from the low blood pressure. Allen was pale, but the skin in the surgical areas looked no worse than anywhere else. This was relatively encouraging. Part of his pallor was due to anemia (the toxin shut down his bone marrow so he could not produce red blood cells) and they gave him transfusions. At this time nutrition was started by vein through a catheter in his left groin. His blood pressure was improving, aided by a switch in medication suggested by the cardiac anesthesiologist who was on for the second surgery. Allen kidneys were really working now (he put out 4 liters in one day). This was also encouraging. There was a set back on Wed evening into Thursday when Allen went into atrial fibrillation (abnormal beat of the upper chambers of the heart). An ultrasound exam of his heart was done to rule out an infected heart valve. Fortunately, Allen heart was fine. This was just another effect of the toxin, but it did not even hurt his blood pressure another good sign. By Friday, Allen looked like he had a good chance of surviving his blood pressure was staying normal with only one medication, his heart rhythm returned to normal, his clotting mechanism was normal and he was tolerating the nutritional support. The nurses and doctors were an incredible group of caring, competent, professional and understanding health care workers. I will be forever thankful of their talents and the decision of Maxine that brought Allen to that hospital. It is an enormous undertaking by the hospital staff to get a severely ill patient through this major ordeal. Encino-Tarzana hospital made the commitment to excellence that provided the opportunity for recovery from this frequently fatal disease. During the week the family made many discoveries. There is an outstanding Gelsonâ store near the hospital with a Starbucks and Wolfgang Puck outlet in the store. Across the street was a good deli with adjoining bakery home of the now famous (and my favorite) black and white cookie. They also had old-fashioned butter cookies in every form and with all the good toppings and fillings. Food is dear to this family. But most importantly we discovered what a wonderful family we have. Schuman power ohana was quite evident. John was always there for us. Mary provided a phone card to allow us communication from the hospital. Peter, Erik, Sharon, Nicole, Louise, Sue provided help in any way they could. The family present on Dec. 31 acknowledged the New Year, but no one was ready to celebrate, as yet. We did watch some important bowl games and celebrated in subdued fashion when USC won the Orange Bowl. By the weekend, Allen had stabilized and Richard and I were heading back to Portland. The next week Tam and I were heading to Hawaii for a meeting, but Richard was returning to the hospital. I stayed in touch with Richard and the doctors by phone. Richard had learned how to be objective and relate pertinent data, making me feel like I was still there. Unfortunately, Allen had taken a turn for the worse his lungs had filled up with fluid and he required lots of oxygen to maintain adequate levels in his blood. This was another frightening episode, since I had seen many patients not recover from this. As with his brief kidney failure, Allen started to improve very quickly. My only concern then was the risk of a secondary infection from being on the ventilator so long (I am paid to worry, so I look for all the possible complications and try to forestall them). Allen continued to have a fever, but his cultures were all negative no sign of pneumonia. The doctors finally changed his IV catheter to a new site and the fevers improved. With the prospect of Allen waking up that weekend (his 3rd week in ICU) Tam and I decided to come home via Burbank. His doctors assured me he was close to not needing the ventilator a major sign of progress. He had been on a drug called Propofol to keep him sleepy and comfortable while the machine breathes for him. It also provides amnesia for the time it is running. Because of its white color, we call it milk of amnesia. When Tam and I arrived, we were able to see Allen off the ventilator and trying to talk through the trach tube that had been placed at the original surgery. This was a thrill for me. When he woke up he asked me about a study I had told him about many years before and he wanted to know how it might effect his recovery. His brain was intact!! That signified a complete recovery to me. When the larger tube was exchanged for a smaller tracheotomy tube it allowed Allen to talk more easily. Of course he started immediately, asking about his illness and course in the hospital. By the following week Allen was starting physical therapy, eating food, and getting stronger by the day. His release from the hospital was a joyous event, with a press conference to cap it off. It is a wondrous story to tell he beat the odds and survived that terrible ordeal with his mental functions intact (or at least back to his baseline), his sense of humor intact and a compassion for others that has been his hallmark over the years. When I think back over those weeks of watching and following Allen course from near death to miraculous recovery I feel the gamut of emotions his course reflected. The fear of a phone call from Bill that first night is as memorable as the fear and awe I have for this disease. Why and how Allen got this will never be known. The bacteria are a common Strep that is easily treated. The fact the Maxine got him started on antibiotics on Sunday helped to fight the infection. This disease process usually occurs in-patients with immune compromise or other significant illnesses. Allen is basically healthy and does not fit the usual pattern. Watching my brother lie there in ICU with all those tubes, IVs, respirator, etc. reminded me of seeing mom like that after her chest surgery for her hiatal hernia. Her course kindled my interest in medicine. Allen re-kindled my interest and made me proud to be in that profession. The hard work, compassion and professionalism of the entire team involved in his care were a joy to see. The joy of watching this strong, caring and loving man fight for his life was most impressive. I lived in constant fear while Allen was in the hospital, knowing so many things could go wrong. The ability to see him via the news conference on the web helped to finally put that fear to rest. Spending time with Allen and Maxine in Palm Desert gave me another chance to assess him for myself. Although some facets of his well-being may have changed, the core of Allen Schuman is intact. This experience has likely changed all of us. Allen has many questions trying to recover the 3 weeks of his life that he lost. Some may be answered. Nevertheless, he is well and it is time to move forward. Jill's ( My daughter-in-law) Recollections of Allen's Necrotizing Fasciitis Dear Dad, First & foremost, I thank God you are with us today. Your light always brings peace & joy to my life, & I truly feel blessed to have you as my father-in-law. During your ICU stay, I prayed for you, & Mom, to wake up healthy and continue your vivacious life with us. Miracles do happen. Not seeing you at the hospital was actually a benefit for me because the only picture I held in my mind was you playing with Jade, Kelci, and Harley. However after seeing your horrible stitches & scars on the video interview, the shock of reality hit me. I cannot imagine the immense fear, pain, & anxiety that you all experienced at the hospital. I am proud, though, to be a part of this Schuman family showing true emotions, strength, and compassion. That's what 'ohana is about! On the night of Dec. 30, when Uncle Earl called about getting on the next flight to see you and when John called about the hospital staff not allowing him & Mom to see you, I knew something was terribly wrong. When Uncle didn't even say, "oh, your dad will be okay," then that meant trouble. I felt scared & helpless watching Richard experience the fear of losing you. Remembering what I experienced from losing my parents, my heart went out to Richard and John. Of course, my heart also went out to Max with the fear of losing her soul mate. I just knew suffering was not to be an option and to stand strong for the weeks to come. My way of sanity and control. Fortunately, you and mom raised 2 smart, brave sons to take care of the family. Once I finally understood what you had, I called the girls' pediatrician to check if they could contract the NF being exposed to you. Counting the amount of days since your NF diagnosis, we were safe since NF invades within 3-5 days. But I was told to be alert of any symptoms. GREAT! I was "alone" with 2 girls and 1 epileptic dog and the knowledge of a deadly disease that attacked my father-in-law possibly in Oregon in my own home. Although I was physically distant from the trauma, I managed to attract a little stress. Since January and learning the devastating results from NF, I have had my panic moments. (For those who know me, I laugh more than panic.) Kelci had 2 rounds of strep throat treatment. The 1st round alone was enough for me because initially, her throat culture test showed negative for strep. I didn't completely relax due to my new knowledge of NF. Then the next day, the nurse called, "Kelci's test overnight showed positive for strep." Well, my alarms rang crazy only because you were in ICU with NF, the same bacteria that causes the common strep. Rich & I walked in the doctor's office with our NF website info and insisted that NF be ruled out. Uncle Earl coached us on questions to ask. The doctor said it was mild, but with our Dad's circumstance, he prescribed antibiotics. Two weeks later, Kelci complained of a sore throat & had a fever. Oh man! We immediately take her to the doctor, and the insensitive substitute said she had strep; it commonly creeps up again if not wiped out by the first round of antibiotics. Then in February, Kelci contracted a weeklong virus (flu-like symptoms similar to NF without the rash but the guessing & waiting period is excruciating). Jade had an awful earlobe infection from her earring (remember, NF can enter from a thorn prick) and she too had the weeklong virus. Just now, the girls' coughs are fading away. And then Harley's weekly seizures. Incidentally, Harley had a seizure while Kelci vomited. I ran to Kelci. Rich ran to Harley. And Jade wanted to run away from everyone who got sick. Thank God for Richard's and my good health to keep us moving forward. Our goldfish had also been a tangible ray of light pulling us through all of the health challenges. From our past experience with fish, Rich & I are amazed that we still have a healthy goldfish for 3 months now. Anyway, Mom's and your courage led the way for me to cope with my family's obstacles. Now that I think about it, I didn't worry about you at all in ICU because I heard you were sleeping through the trauma. I imagined your spirit taking a short vacation while the doctors fixed your body. (Not seeing you at the hospital gave me the chance to think this positive approach.) Richard's tears when describing your body's appearance caused me to be thankful to see you in a different light. I felt thrilled to be the 1st one to tell John the great news that you didn't need skin grafting. (He just returned from London & couldn't find mom, so he called our home & Richard was at work.) Like I said before, the shock of realizing the severeness of NF's attack finally hit me when I saw your scars. It was then I felt terrified for my life & everyone in it. NF is 2 letters our family won't ever forget. Washing hands and cleaning wounds are 2 tasks our household takes much more seriously. Uncle Earl gave us an excellent book to read about NF: Surviving the "Flesh-eating Bacteria" by Jacqueline Roemmele & Donna Batdorff. I personally like the survivor stories, and the info is very helpful – scary but helpful. While you were in the hospital, Aunt Tammy emailed Rich & me informative websites on NF, which helped me understand more about your ordeal. Again, thank God you survived and faced less complications than other NF victims. If you haven't done so already, sharing your story with the National NF foundation (nnff.org) may bring peace to you and hope to others. I passed the knowledge to family, friends, and our school district's nurse. God works in mysterious and miraculous ways. I know you feel "bad" for causing your family's heartache. Well, it's not your fault. You must believe that. I believe God chose you to teach us all about NF, including medical staff, because you could handle it. I also think God chose you because you needed to learn something significant about Allen Schuman. Your strong will to survive and remain loving teaches us a lot about the human spirit. We love you, and we want you to live a long, happy, healthy life because you deserve one. Love, Jill You're Awesome Dad!!!!!!! Louise (My sister-in-law) Recollections of Allen's Necrotizing Fasciitis Allen, I cannot hope to be as eloquent or professional as Earl, but I will try my best. When we first heard that you were seriously ill, I could hardly believe it. We had not seen you as recently as had the family in Lake Oswego. Still the last time we saw you, in November, you were healthy and happy. Our first encounter with your illness was with Maxine and John who were in the hospital lobby with Marvin and Sue who had arrived before us. It still did not register how ill you were, even when the doctors came to talk to Maxine after the surgery. In fact, only later did we find out how close to death you had been. That first night when we arrived home, I went on line and found a web site founded by survivors of NF. That's when I learned a bit more about this awful disease. It was scary, but also comforting because obviously there were people who survived and went on to live happy productive lives. When we saw you in the ICU, you were hooked up to so many tubes and lines, it was awesome. Something was always blinking or clinking or buzzing. Still, to me, you did not look that awful. I did not see, as Earl did, how bloated you were, or how bad your incisions were. However, I knew you were really ill because you were sleeping all the time and you could not talk. I felt helpless because there was nothing really that we could do to make you better. I like to think that we helped to support Maxine in a small way. She was magnificent and a real rock throughout. She was terrified and worried and probably also feeling helpless, but she kept up her spirits and no doubt everybody else's too. I think she loved you to health. Yes, your doctors and nurses were wonderful and deserve as much credit as possible, but Maxine should get at least as much credit as they. The rest of the family, and I do not include us, were also wonderful and supportive. Marvin and Sue were there every minute they could be – which was a lot of minutes. They were there to provide help in any way they could, and they did. It goes without saying that Rich and John were great support. Rich tried very hard to be brave and find out as much as he could and become the liaison to his own family, even though he was scared and hurting. John was more visibly upset and was there to support Maxine, but seemed to need to withdraw into his own inner resources to find a way to deal with this overwhelming situation. Earl, of course, was the one everyone looked to. We needed his expertise in explaining what was going on, what the prognosis was, what the doctors were saying (and what that meant in real terms). He, more than any of us, knew how serious your illness was, but he remained outwardly calm and as optimistic as he could be, even though he did not give us false hope. When he began to relax a bit, that made the rest of us feel more hopeful. I think your medical team was happy to have him there so they could speak to him as a colleague who could then interpret for the family. Although the few times I was there when a doctor came to speak to the family, they seemed very open and cautiously optimistic, but realistic, as well. We were in touch with our kids throughout, and amazingly, Peter and Kathy both told me that they had a good feeling about you, even from Day One. I guess being twins helps you to do that since they had not spoken to one another. Erik, unsurprisingly, was more cautious but even he felt good about your prognosis. The whole family took over the ICU waiting room, we ate together, we slept in the same house for a good three days, we all were striving toward a common goal – get Allen better and out of this place. As awful as the situation was, we bonded as a family. You were the heart of it, even though you were not physically in the same room with us. When we had to leave to go to San Francisco to work, you were much better, but still not out of the woods. While we were in SF, Bill kept tabs on you and Maxine by calling every day. He remained optimistic the whole time, even when you were in the hospital. He said he knew from that first night when the doctors told us that your blood pressure was rising that you would make it fine. Little did we know how fine. It still amazes me that you could be at death's door one day, and practically the next day be up and about and chomping at the bit to get back to work. You truly are a miracle (not to mention a star of TV and newspapers). We are happy to have you be so because we love you and we want you around forever. Who else can I torment and be tormented (and outrageously complemented) by? Stay well – that's an order! Love, Lou Bill's (My brother) Recollections of Allen's Necrotizing Fasciitis I just saw the pictures from your Palm Desert vacation. It's hard to believe that they could clean out all that garbage with those incisions. Those surgeons, especially the chest surgeon, are wonderful seamstresses (?). They did a great job. Yes, the scars are ominous looking, but considering what they had to do to get you well, I think they did an incredible job. I don't think the scars are bad at all. As time goes on, they will only get better and better. When I first got to the hospital and they said your blood pressure was 55-65 and you were on life support, I felt that I was losing a brother. To me it was the same feeling as when they told me mom had died. By the time I left that night to stay with Maxine to give her support and they said your blood pressure had risen to 105, I felt that your body was fighting back and you would make it. Over the next two weeks as each of your body functions began to improve (blood pressure, kidney, etc), I felt more sure of your recovery. By the middle of the third week I told Maxine that she would have to keep you down for at least one month as you would be anxious to get back to work by the end of the first week of March. She was still worried because you had not come out of your sleep. I felt that you were progressing at a very fast pace. Maxine was fantastic throughout this period of time. I don't known if I could have been as strong as she, if Louise had NF. Through her suggestion I would spend time talking to you, telling you how much we all loved you and needed you to get better, especially since I could not go on a 50th anniversary cruise with two ladies and needed your help. Therefore you had to get better. I will always remember Maxine & I going for the black & white cookies and having great meals at the Deli. We would talk about you and some of the wonderful times you both have had together and then we would discuss future plans. My portion of the write-up is short because Lou wrote a lot of what I wanted to say. We have been married so long that we think alike. Love, Bill