Lyda Koppers

This is the story about my mother, Lyda Koppers. She is 70 years old, actually celebrated her 71st Birthday in the hospital Monday. She is an optimistic, caring and loving woman. She is not tall, but she stands tall, has a spirit and courage that are unbelievable. She has worked all her life together with my father running their own business. She found it difficult to retire but has many hobbies and her 5 children and 9 grand children are very important to her. My parents were a team, best friends and lovers and when my father passed away suddenly two years ago, she kept her promise to him and went on, for all of us. At the end of November 2003 my mother fell down the stairs. She had bruised almost everything in her body, her ribs, arms, legs etc. but had not broken anything. She was recovering real well until she developed, what the doctor thought, were vein infections in one leg. When an open wound appeared, after a couple of days, he tried to get her admitted to the hospital for better wound care. She had a large "blister", wound fluids "running" down her leg and a lot of pain. That was a Friday. There was no bed available. On Saturday the 10th of January, as I was caring for my mother with one of my sisters, I basically saw her fade away under my eyes. I would be talking to her one moment and she would be unconscious asleep all of a sudden the next moment and she had excruciating pain in her leg. I know my mother well, she can take a lot of pain, my gut told me that this was serious and that I had to get her to the hospital fast. Doctor and ambulance came and she was taken to the emergency room. I explained to the specialist what was happening, he examined her leg and immediately said that this was very serious. He started treatment immediately. Her blood pressure was almost nonexistent at that point. We were initially relieved because we thought we could stop worrying as now she would get proper care. Well, when the specialist came to talk to us, we were shocked beyond belief. He told us that her condition was very serious, that she had contracted something that even for young and healthy people would be a struggle to survive. They would do everything they could but we should realize how serious this was. He diagnosed her correctly the moment she came in, she had NF. She was taken to ICU as her heart function was not good and her kidneys were not working well. We went home for a couple of hours that night but did not sleep for a minute, scared and worrying. The hospital informed us that they were working hard to get her kidney and heart function better so that they could operate on Sunday. They had no choice, she was too weak for an operation but if they did not go in and remove dead and infected skin and tissue then she would not have a chance either. She survived the operation, and 4 more followed in the week after. Every time they removed tissue and cleaned the wounds. They kept her sleeping in ICU. They considered amputating her leg but she was too weak, it would have been a very high amputation as the bacteria had "eaten" into her whole leg over the back of it. The flesh and fat tissue was completely gone, you looked at the bare muscles. Only later when I learned a lot more about NF through this website, and by reading the book, I started to realize how lucky she is to have survived. She had all the complications, blood poisoning, very low blood pressure, kidney failure, heart failure, you name it, she had it all. She has always been a fighter and she told me last week that while in ICU, drugged and asleep, she did hear a women's voice say, "I do not think we can save the leg". She mentioned that was the moment that she thought "over my dead body" and started to fight even more. The specialist confirmed that she had heard correctly. For weeks, out of intensive care, but still in special care in a room alone, she fought to survive. She was very, very weak and they had warned us that if we had a cold, we were not allowed in, the risk for her was too great. They kept her isolated because of the danger of infection. She was swollen because of all the fluids they kept pumping into her body and short of breath because of that. After the operations, when they finally thought that they were getting to a phase where the bacteria were not spreading anymore, the specialist started treating her leg with vacuum pumps. She had two of them next to her bed. It proved the right treatment, she not only had some rest from the pain because wound care was not every day now, but it also allowed the leg to start to "heal". They gave her (and continue to do so) special shakes with a lot of vitamins etc. Two weeks ago, after 8 weeks in the hospital, they did skin grafts. They had to cover 4 large areas of 10 cm by 20 cm each at the back of her leg. The skin took (80%) and she is getting stronger every day. There are some minor problems where the "good" leg, from where they took the skin, it was not stretched out enough and the skin was growing back too tight, but those are now all "small" matters. They will start therapy now to get her back on her legs, to learn to walk again and we hope that she will be coming home soon. That could be as soon as 4 weeks, but we do not know exactly. The hospital says she'll be home before the summer. Her leg is deformed and will look strange but my mother said that although she will not be able to go onto the cat walk anymore, as long as she can walk again, she does not care. I am convinced that she only survived because she was lucky enough to get a specialist who diagnosed her with NF immediately and a very strong will to survive, a strong fighting spirit. We know that she will still have a long ways to go but that does not matter, she has survived this horrible disease. I want to thank everybody who has contributed to this site, not only for the factual information on NF but also the stories from families and NF patients as that supports you a lot when going through this difficult time. It was your experiences and comments that helped me go on and made us ask the right questions to the doctors about my mother's treatment. Thank you all, Denise Koppers