Rose Marrie

I am so glad I found your website because I am a survivor of NF and here is my story. On October 4, 2010, I started to run a low grade fever and felt very crappy. I had been very active over the summer so I thought I had the flu. I travel for my job and also to visit my boyfriend up in Wisconsin. I started to feel feverish and took my temperature and it was around 100 degrees. I was on the phone with him and wanted to say goodbye before he left on his business trip overseas and told him that I was feeling pretty crappy and I thought I had the flu. On October 5, 2010 my roommate was scheduled to be at work for his job at 2:30pm and I was just laying on the sofa unable to keep any water, juice, or soup down. I had a lot of diarrhea and could not control it. I was having trouble breathing and asked him to take me to the emergency room. At 47 you would think I would have known better than to say its just the flu. Well, I didn't make it by myself to the ER. I ultimately stopped breathing on the stairway on the way down from the second floor home in the duplex. On October 20, 2010, 15 days later, I awoke in a hospital and had no clue what had just happened to me two weeks earlier. I was taken to Resurrection Hospital on the northside of Chicago where I was immediately intibated and placed on life support because not only did I have double pneumonia, I was also diagnosed with NF, renal failure, kidney failure, and my entire body was shutting down.The kidney doctor, she placed me on dialysis, and on October 5th I was rushed into emergency surgery for NF on my abdomen. I awoke at Kindred Rehab hospital in Northlake Illinois on October 20, 2010. I was completely dazed and confused from being in a Morphine coma for a couple of weeks. I had no idea where I was and trying to remember was probably the hardest thing ever. I kept thinking it must be the flu that put me here. My sister drove in from Indiana earlier in the day and all I can remember is waking up to see her walking in the room. I guess I never woke up or had moments of being awake. Surrounding me was birthday cards and a rose plant. I asked my sister what happened and she came back and asked if I needed lotion or anything from the store. She wasn't answering my question. The look on her face really scared me because she was avoiding the question. I had no idea what had happened because not one nurse or my family would tell me that I am now missing most of my abdomen, tummy, and most of the pelvic area and all the skin. I had to piece it together from asking questions from the 12 doctors that worked on me during that time. I had 6 infectious disease doctors, a lung and heart doctor, 2 general physicians, kidney doctor, eye doctor, and finally a psychologist. All were unwilling to tell me directly what in the world was going on. One of my doctors finally told me that I had contracted double pneumonia and NF. I asked her, what is it and how did I get it? She described what happened with the surgery that I had to have most of my abdomen and tummy removed and said, its a bacterial infection that anyone can get and we are mystified why it is happening and where it has come from. I really did not understand because of the sedation and the Morphine. I tried to get out of bed the next day and I fell on my fanny trying to stand up. I did not realize that I could not walk because of the surgery. I was tied down with a sort of a straight jacket from the assigned nurse named Barbara. I felt so violated and depressed was an understatement. After asking this nurse to take it off, I was told it was for my own good. I certainly did not agree with that statement, called my family, and I asked for the supervisor and the hospital social worker. It was a nightmare for 5 days to be in a straight jacket because no one would take the time to explain to me what exactly had happened. I had to threaten a malpractice suit to have it removed. I knew I couldn't walk when I fell on the floor, and for the first time I realized that this infection was having a more direct impact on me other than surgery. I was now feeling that I was worthless and ashamed for being ill. I was attached to a wound vac and wearing a straight jacket. I became more and more depressed and alone. How could this be happening to me? Do they treat everyone with this infection this way? Finally, I was transferred to another room and given different nurses. Thank God. My healing has begun! I decided to ride out this infection with limited painkillers and sedation because of my experience with the first nurse who obviously did not care about my mental health nor my illness. The doctors called in an eye doctor to test my vision because the NF had gotten into my bloodstream and the infectious disease doctors were concerned about blindness. All went well and no damage. The doctors also sent in a psychiatrist to talk to me about my insomnia and anxiety. I refused sedatives because of the situation that occurred with nurse Barbara and sleep was not an option with all the pain. He asked me why I couldn't sleep and why I had so much anxiety and I told him straight out that being tied down was one of the reasons and that I had died a couple of times in ICU and hearing about it made me upset. I also told the Dr. that having two roommates in the same room, one was on a ventilator and the other screamed for the police all night because she felt unsafe in the hospital. I asked him, wouldn't that keep you awake all night? Between not sleeping and all the traffic into the room, my sister requested another room. I was eventually moved into another hospital room and for a few days I was alone. I felt better about the situation and finally got some sleep. Kindred Hospital has a wound care team of nurses designed to treat this infection. I was lucky to have Blanca and her team and her spirit was amazing and it started at 3am when she arrived at the hospital to change the dressing and the wound vac.She would say to me, girlfriend, we are going to get rid of this thing and get you out of here as she would smile and snap pictures for the doctors. I finally had a reason to fight this instead of giving up. I was amazed how this team was dedicated to helping the patients who like me, were fighting for their lives. I was on a catheter and I started to run a fever. Guess What? I am allergic to the Catheter and it was removed. I finally stopped running the fever and after 3 straight weeks of antibiotic IVs, I started to feel better. I remember when Blanca removed the catheter and for someone on dialysis a month earlier, I was able to Pee- and a lot of it. I was assigned to the American School nurses training for nursing students. I met some of the most caring and nice people who were studying for their RN. I had a different spectrum of students from young women to a man in his 40's doing a career change from Singapore. They bathed me, washed my hair, pedicures, and makeup. The teacher signed off after each visit and we became friends. I had never been in a hospital before as a patient and I didn't know what to expect. It was apparent that this disease and the surgery that followed would be so bad. I remember that the house doctor would come in and check my breathing and heart. He just would look at me and say, I just can't believe you were on life support a couple of weeks ago until one day he came in during a dressing change and looked at the wound and heard oh god and it wasn't in a good tone of voice. He came in to discuss skin grafts for my tummy and abdomen and here I was with no muscle, tissue, skin, and just laying there with tears because I just couldn't take more than tylenol and it hurt. I had never experienced such pain in my life. Well, needless to say, they decided not to do a skin graft and did not have any stitches and it was a 22x14 hole in my body. In November, the doctors decided that I needed to learn how to walk again. Here comes the Physical Therapy dept and I had no idea what to expect. The first day was the worst. I couldn't sit up. I just sat in the portable bed down in physical therapy and learned how to use the arm bike. The first thing they did was decide to get my upper arm strength back. I couldn't even pull myself up in the bed. After several trips downstairs to therapy each day, they decided to put me on the walker. With 3 people following me and holding me up, I walked a few steps. I was crying because I thought this was it. I am never going to walk. Over the course of a month, I learned how to walk with a walker, a cane, and finally by myself. I had on a safety belt so they can pull me if I fell. I was determined to walk again even though my legs were completely numb and still are numb from the surgery. In mid November, I asked the therapist if I could do the hospital stairs and I pulled myself up those damn steep stairs to the second floor. The therapy was so intense I had leg spasms at night and needed more tylenol. They finally transferred me to a private room where I could stand up and use the bedside commode came and boy did I eat not one but two dinners. I felt really good but tired. My wound was shrinking fast and most of the pain now came from getting my leg muscles back in shape. On Dec 15, 2010, two weeks before Christmas, I got the news that I had a choice between nursing home care or home care. NO WAY was I going to a nursing home. I was assigned home hospital care and ended up with a guy nurse who really got me back to being myself. He explained that the numbness in my legs and the hardness in my tummy and belly would probably be permanent and I have to learn to live with the discomfort. He was so honest about what had happened and that I have to live differently with mobility and my eating since I had to have up to 8 insulin shots a day in the hospital. My sugar levels are practically normal now and I can walk blocks and its now March 2011. I have days where I am so tired and sore that I need to take a pain pill and a really good nap. He explained to me that healing takes up to a year or more and I am willing to do what it takes to have a normal life and activity considering I am missing allot of things like abdomen muscles like most people. It has been the hardest journey of my life and for of you who are survivors and those with someone in your family, its ok to cry, and its even better to live!