Arlene Nix

My name is Arlene Nix and I was a sepsis survivor at 55 years old. I feel very fortunate to have survived and come through this experience as well as I have. I know how lucky I am. It has been 2 years now since my nightmare started.

Around the end of January 2011, I started feeling ill and had a fever. I knew the symptoms of the flu as I’ve had it many times during my life. (Sepsis and Influenza) I never went to a doctor when I had a cold or the flu as I knew they had to run their course. I started taking all the cold/flu over-the-counter medications. Around the 6th day of being so sick with high fevers and nausea, I started having a hard time breathing and was getting weaker and weaker and feeling strange. I wasn’t coughing much at all. If I did, it was very faint. I had no appetite at all.

I told my husband I felt so bad, that I felt like I was dying and that I think that I needed to go to the emergency room. Odd for me as I never went to doctors and never have asked someone to be take me to the emergency room. That was on a Friday evening and my temperature had gone up to 103, and then it started to go down a little, so he told me to wait until Monday and call my doctor for an appt.

We had no idea how sick I really was. I went into another bedroom to sleep since I was so sick and miserable. I didn’t make it to Monday to call my primary care doctor. My temp went up to 104 on Saturday and by Saturday night I was in delirium and my husband said I was “talking out of my head” all Saturday night and into the wee hours of Sunday morning. I do not remember anything after Friday night except a few hallucinations. My husband rushed me to the emergency room early Sunday morning. This is what I was told: Randy (my husband) got a wheel chair for me and rolled me in ER. A team of nurses swarmed around me checking my vital signs. My blood pressure was 74/48, kidneys were failing, and I only had a very faint heartbeat that was hard to pick up. I was originally diagnosed with congestive heart failure.

I was taken to ICU and intubated, and put on a feeding tube. I was sedated, tied down to the bed and they had to give me the maximum of a paralytic drug as I was fighting so and pulling everything out. They had no idea how I had the energy to fight them so. Of course, I remember nothing. A lung doctor, heart doctor and a kidney doctor were called in. They put a main line in my neck and one in each arm. Three IVs – and Randy counted 14 bags of fluids and medications going into my body. I had lost almost half my blood due possibly due to anemia and was given blood transfusions. Through X-rays, it was determined that I had double pneumonia but, by the second week, doctors were finding out that the antibiotics were not working. (Sepsis and Pneumonia)  My vitals were still horrible and the doctor told my husband that I could possibly die.

It was finally determined after tests came back during the middle of the second week that I had the H1N1 virus, which caused the double viral pneumonia and then sepsis. I had also developed E coli while I was in the hospital, as if the rest weren’t enough.

I was in ICU intubated, sedated and paralyzed for a total of 2 weeks. The doctor finally decided that I needed a tracheotomy to make me more comfortable. On the day prior to the scheduled tracheotomy, my vital signs started to get better. To this day, I think it was hearing my mother’s voice talking to me that helped me start fighting again but it could also be because the doctor changed the protocol due to the diagnosis from the tests, or both combined. All I remember is waking up and not knowing where I was or what was going on. My mom was right there and I had no idea I was in a hospital bed and could not move. I remember thinking why are my parents here? They live in Florida and I live in North Carolina. Nothing was making sense.

I was over the hump thanks to a wonderful team of doctors and nurses and a whole lot of prayers (so my mom says). I had horrible hallucinations after that as I would drift in and out and could not sleep for any length of time. I thought that the doctors and nurses were trying to kill me and had convinced my family of other things that were not true. It was very strange. I didn’t know why I could not sit up by myself get out of the bed. They say you atrophy really fast under these conditions. I was having something called ICU psychosis. I didn’t even remember being sick.

After a few more days, I was taken from ICU to a hospital room where I stayed for a week. I could not walk or write and was too weak to even speak much. I felt like what it must be like to be in old and in a nursing home and bedridden. I was given sponge baths in bed. Physical therapists came by twice a day to help me sit up, to stand, and to finally start taking a few steps. I will never forget how my feet felt like jelly when I stood up for the first time. I was so weak that just a few baby steps wiped me out. I could not sit in a chair long as it would cause pain in my back as I was so weak. I would not eat anything as it all tasted like cardboard.

They taught me how to pull myself up in the bed and I was given a walker. At the end of the third week, I was released and I went home with a walker and oxygen. I had in-home health care for about 4 months and on home oxygen for about 5 months. I started physical therapy and speech therapy at Carolinas Medical Center around May/June 2010. I knew something was wrong when I came home as I didn’t remember anything and had trouble with time, dates, months, confusion and decision making. I started having a problem swallowing food. I was chewing okay, but trouble swallowing. After I quit using the walker, I walked like I was drunk, as I had no balance, so I started using a cane. To this day, I still do not have all my balance back but I’ve learned how to compensate.

When I was able to walk around the house I would try and help fold clothes but I didn’t remember how. I didn’t remember how to cook and I always loved to cook. I could not do two things at the same time. I didn’t have the energy to do these things but it was very upsetting how I forgot everything. My hair started falling out but that was the least of my concerns. I could not stand and take a shower or sit in the tub by myself as I didn’t have the energy to lift myself up. My left arm was useless and I was in major pain. My neck, back and arm hurt constantly. I had to have a chair in my tub so I could sit on that and take a shower. When I was able to drive, I would go to the grocery store for one thing and didn’t remember that one thing. I would get lost in a city that I’ve lived all my life. During all of this, I fell and broke my ankle due to not having my balance.

In May, 2010, (3 months after getting out of the hospital) I felt sick in the middle of the night and got up to try to get to the bathroom but collapsed at some point. My husband rushed me to the emergency room around 3:00am after cleaning me up and taking my blood pressure. My blood pressure was 65/48. I was very dehydrated and kidneys were starting to fail again. That is when I realized that I had not been eating or drinking anything at all for a few days. No one else could tell me anything as people do not look to see if you have eaten or had fluids.

Whatever happened in my brain, I had lost my thirst. To this day, I still do not get thirsty and have to make myself drink fluids. None of the doctors will explain to me why I have no thirst or why I’ve experienced the things I have. Not even my neurologist and it’s very frustrating. I only hear from a couple of other doctors I went to, when I pry, that it’s primitive (as we all have hunger and thirst for survival) and has something to do with the damage to a certain part of the brain. I keep hearing the word “abstract.” And, still not sure what that means exactly.

I am still in the process of recovery. I’m not able to do the job that I had prior to getting sick. My brain has been and is sort of rewiring. I’m not in the horrible pain in my neck, back and arm that I had been in for almost 18 months anymore due to a compressed nerve in my neck, damaged left arm and shoulder from my stay in the hospital. It was thought I might have to have shoulder surgery due to the shoulder impingement that took forever to diagnose as so much was wrong with my arm.

Lots of therapy finally helped me get my arm back in working order. I still have pain but it is very tolerable now. I have been diagnosed with having PTSD and hypoxia or anoxia as I have short term memory loss now due to lack of oxygen prior to going to the hospital. My personality is different and I’m not the same person and I do not even feel the same. I have always been a very patient, calm and peaceful person and now I can get very short tempered and I say things I would never say before. It is things you might think but would never say. The speech therapist said that I have lost brain filters and I have had to learn new strategies to control my temper. I am starting to conquer that. My family had no idea how to deal with all my personality changes.

One positive thing is that the brain does regenerate and I know that for a fact now. I have come a very long way in these 2 years thanks to the medical field in some areas and my determination and perseverance to not give up. I am not the person that I was and probably never will be, but I’m getting used to this new person that I have become and I have finally accepted my memory loss but have shed many tears over that one as I had such a good memory prior to my ordeal.

I remember the dark days where I got depressed as I thought I would never see the light of being back to who I was and to be pain free and to have my energy back. I still do not have the energy that I used to have but it gets better all the time. I might do well for a few days and do a lot, then might have to rest for a few days. I got on my horse for the first time in October 2012 and walked her around the pasture. That is when I knew I would be okay. I hope to start going on small trail rides this spring. There were two things that I thought in the beginning that I would never be able to do again and that was to dance and to get back on my horse. I made them my goals. I have done both now…slowly. I know I still have a way to go, but I have learned so much through all of this. Even my friends are telling me that I seem to be more like “me” these days.

It’s okay to back up when you are given a second chance at life and start taking baby steps again to get to where you need to be. My priorities are finally getting in order. I thank God for all the wonderful caring doctors, nurses and all the others in the medical field who are there to help and fix us up when we are sick even when they do not understand (especially what happens in the brain). I don’t know what I would have done without my psychologist that I had to start going to as he was the only one that I could tell everything to and he helped me to understand what I was going through, and he helped and is helping me make sense of it. Evidently, I have experienced PTSD during this process, which answers a lot of questions for me as to why my behavior has been so strange. Originally, my pulmonary doctor told my husband it would be 18 months before I would be close to being back to normal. He was right. I’m close and getting better every day.

I appreciate the Sepsis Alliance Group as through reading other people’s stories, it has helped me to understand that I’m not alone in this. No one can possibly understand what you go through unless someone experiences it their self. This is a wonderful support group. I have never known anyone personally to have sepsis or to experience the things I have and Sepsis Alliance and the stories of others has helped me so much to understand that there are others that have gone through the same, some less and some worse and have survived to live a normal life after that.

I try to get the word out as much as possible on sepsis as I would have been dead in 8 days just from a flu virus eventually leading to septicemia, which was on my discharge papers from the hospital. The stories from the families of the ones that didn’t survive sepsis have touched me so and my prayers and thoughts have gone out to them when I’ve read their stories. I’m so glad that my family never had to experience that loss.

Thanks so much for allowing me to tell my story and I hope that maybe my story can inspire someone else not to give up and get depressed and to know that the healing takes a lot of time and patience from yourself. Also, you need a lot of understanding from family and friends to help a person going through this, especially the emotional part. I did not have a great support group from family and friends. Not all their fault, they just didn’t understand how much support that I needed and I never said, as I was such a strong person prior to getting sick and was too proud to complain which was a mistake. I always pretended that I was fine so not to worry anyone. As long as you look okay and smile, people believe you are okay even when you are not. That is a huge lesson I learned. Most of my family thought that when I was released from the hospital, that in a few short weeks I would be back to normal and have all my energy back and be the person that I had been just a few weeks prior. What a shocker as it didn’t happen that way and they have learned a lot during this process also.