|August 25, 1926 - April 24, 2007|
I write this in memory of my beloved mother who lost her life due to this terrible disease.
My mother had rheumatoid arthritis for nearly 25 years. About 12 years ago she developed a rare complication of the RA - fibrosing alveolitis in both lungs. She was put on steroid medication for this and was told it would be for the rest of her life. All her doctors assured her that the dose she was taking was very low and the side effects would be minimal. However, in the end, the medication destroyed her immune system and made her unable to fight back against the NF.
Last August, just before she turned 80, she fell in the garage and hurt her knee. There was no fracture or any apparent injury but the knee gave her a lot of pain and she had to start using a walker. Her doctors tried various painkillers in increasingly stronger doses but nothing seemed to help. In March this year someone told us about Emu Oil which was said to help in easing this sort of pain and I ordered some for her. The results were amazing and she started to feel much better and even talked of walking normally again without the walker. She was so much happier that last month because she was finally having some relief from the pain which had been there for 8 months. I could see the relief in her face - she actually looked so pretty again.
Around the 17th or 18th of April, she complained of a pain in her left thigh. The painful knee joint was also on this same leg. She told me that she must have sprained a muscle as she had been trying to exercise her leg. Neither she nor I took it very seriously. I rubbed a pain relieving gel on her thigh and she felt better keeping a hot water bottle on the site of the pain. However, as the days went on the pain seemed to be getting worse and she said it was painful even to touch. We still didn't take it too seriously because with her long history of RA pain in the leg was not unusual but on Sunday 22nd I took her to the hospital. She was seen by the orthopedic surgeon who had treated her knee and although he commented that the thigh felt warm, he didn't seem particularly concerned. He gave her an injection to kill the pain and something to help her sleep better and said to see him again if it didn't clear up after a day or two. I was very relieved. While waiting to get her medicine she complained of feeling extremely thirsty and I went down to the hospital cafeteria and bought her a bottle of water. She seemed fine once she got home - she stopped to look at the garden which she loved very much, she had a good lunch and enjoyed her food, she had some of her favorite ice cream and we watched a movie on TV together. Later that evening my brother who lives overseas, phoned her as he always does on a Sunday and she talked with him and his two kids for over an hour. That night, she was restless despite the sleeping pill, she kept complaining that her leg was hurting and it was difficult for her to turn in bed by herself. I had slept in the same room since she fell last year and I had to keep getting up to turn her. I noticed she didn't get up to go to the bathroom as she usually did a couple of times each night but I thought it was because of the sleeping pill. The next morning I woke up as usual and went to open the windows and put the coffee on. She seemed drowsy so I didn't disturb her. When I made the coffee I came back and asked her if she wanted to get up and she said yes but when I tried to help her up I noticed she couldn't stay upright, she was kind of falling over. Her speech was also slurred and her breathing was irregular. I thought she had had a stroke and asked her to put her tongue out (something I had read about somewhere) and she did as I asked. I asked if she had a chest pain and she said no. Then I looked at her leg and the thigh was very swollen and faintly red. I called for an ambulance and she was rushed back to hospital. The doctors in emergency saw her leg but because of her irregular breathing they seemed to go off on a wrong track and sent her for a chest X-ray. The orthopedic surgeon and her physician were then called in and the physician said she should be transferred to Intensive Care. The orthopedic surgeon pressed her thigh and felt a crackling under the skin - he got me to feel it too and he said he didn't like it and that it hadn't been there when he saw her the previous day. That's when the nightmare began. They put her on oxygen and nebulized her and gave her physiotherapy to clear what they said was mucous in the lungs - my heart broke to see them pummeling her back. She kept complaining that her leg was hurting and wanted to turn but when she was turned it was still hurting and she wanted to lie flat again. Although her speech was still slurred she was concerned about me as usual and asked me if I was hungry and told me to go and get something to eat.
The doctors didn't tell me much. The consultants may have known what was wrong but the junior doctors seemed quite confused - I heard them talking of cellulitis, deep vein thrombosis and so on. They took so much blood from her, her arm was badly bruised. I was in the hospital the whole time but couldn't stay continuously in the Intensive Care Unit. I kept slipping in to tell her that I was close by if she needed anything. By evening, the doctors told me that her condition was life threatening and that there was an infection in her leg but it was not localized so they couldn't operate and clean it out. Instead they were giving her massive doses of intravenous antibiotics and hoping they would take effect. They said the tests showed that her kidneys were not functioning properly and they wanted my consent to do dialysis. I told them to go ahead. They asked if she had a wound through which the bacteria could have entered her system and I told them there wasn't. Later they discovered that it was an intestinal bacteria called Clostridium which had caused the infection. They also asked me to inform any family who needed to be informed and told me that the next 48 hours were going to be critical. I couldn't believe what was gong on - I felt so numb and acted like I was a machine. I called my brother and asked him to take the first flight home and then called other family members. Everyone gathered round and she was able to recognize and talk to them. Despite what the doctors said I actually felt hopeful because her breathing was now more regular, she was able to eat some jelly which the nurse fed to her and when someone asked her how she was she answered "very much better". I stayed in the hospital all night, sleeping for a couple of hours on the chairs in the waiting room. I tried to slip in to the ICU to check on her but the staff wouldn't let me and said I would be allowed to go in at 6 the next morning. I sat there praying all night and went in at 6 a.m sharp. When I saw her I knew she was bad again. Her breathing was irregular and she didn't respond when I spoke to her. The orthopedic surgeon saw her and said he cold now feel the crackling on her lower leg as well. He said the infection had spread. I also saw the nurses show him some horrible purple blisters on her inner thigh and I was horrified when I saw them. I asked the doctor what it was and he said it could be due to an allergic reaction to the medication but I now know from your website that this is one of the symptoms of NF. The rest of the morning passed in a blur. I had my cousin send for a priest. The doctor in charge of the ICU called me into a room and said that there was nothing that could be done and that soon it would be necessary to decide whether she was to be put on a ventilator. I asked what were the chances of her fighting the infection if she could be kept breathing on the ventilator. They said her organs were shutting down and the chances of recovery were less than 1%. I knew my mother would not want us to prolong the agony if there was no chance of survival and I didn't want to have to later make the decision to take her off the ventilator so I told them not to put her on it and that was also the doctor's recommendation. I was allowed to stay with her after that and I sat by her bed holding her hand. I asked the doctor if she could hear me and she said maybe she could so I sat there and told her that I love her and asked her to please fight the infection, please stay at least until my brother got there. By around 2.15p.m I noticed her breathing was getting slower and slower and asked if they could put her on the ventilator at least until my brother arrived. They said they would tell me when it was time to do that. A little before 2.30 they said it was time to put her on the ventilator and asked me to leave the room but I only stepped back. I noticed there was a sudden commotion and the nurses and other doctors came rushing in to her room. My step brother was with me at this time and we went to the doctor and asked what was wrong. He was a young doctor and he seemed to be struggling to find the words to say. I knew then and I asked "She's gone, isn't she?" and he said yes. My world stopped at that moment. I could only go into her room, put my arms around her as she lay on that bed and I cried my heart out. They kept her on the ventilator until my brother arrived about two hours later, straight from the airport. I sat with her until then, holding her hand.
It wasn't until I saw the cause of death on her death certificate that I knew what this terrible and cruel disease is called. I searched on the Internet and found your site. My mother was all I had. My brother lives so far away. It was just mum and me, we were like two halves of a whole. She was my friend and companion and my life will never be the same without her. I miss her so much and my life is so empty now. Thank you for your website and for making available information on this awful disease. Hopefully, if people are made aware of the symptoms other lives can be saved. Thank you in advance for publishing this memorial to my mother.
Roshini Cheryl Fernando (Daughter)
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July 5, 2007