Ian Pavey

My story starts at the beginning of July this year (2007). My husband had a bad throat, his neck started to swell up so he went into the local walk in clinic to see a nurse expecting to get some antibiotics. The nurse said it was a virus and that it would work its way through his body just drink lots of fluid and take paracetamol. His neck kept swelling up and within 24 hours I was calling an ambulance. It was about 10 30pm, we were put in a cubicle for about an hour, and then Ian was examined by numerous consultants who were totally baffled. They then put a camera down his throat and after a quiet discussion they whisked him away to surgery, there they put an airway down his throat as it had nearly closed. They sedated him and gave him a scan. It was 2 in the morning and I got put in the family room, where I stayed until 6am when a consultant came to see me. He told me that Ian had some abbesses that needed to be removed and they were going to do it straight away. I waited until 7am and rung my daughters who then arrived at about 9. Ian was still in the operating theatre. A consultant came to see us at lunchtime when he told us that it was NF he had contracted in the back of his throat. He said his condition was critical and we were to expect the worst, He might not make it. Some 12 hours later, the 16 surgeons finally finished operating and he was still alive. So when we finally got to see Ian he was in intensive care on a life support machine and the next 72 hours were crucial. He made it through those hours and was on the life support machine for 2 weeks. During those 2 weeks, he was taken into surgery again to debride (clean the wound) and make sure all infection was gone, they paralysed him during surgery to make sure he didn't move. In the third week, he started breathing on his own. In the fourth week, he was taken to the head and neck ward and the surgeons said it was a miracle he was still alive. They had never seen so much poison in one place of a person. He had a feeding tube through his nose, he couldn't eat or drink. They put a tracheotomy in his neck so he could speak to us. 4 weeks later he had his feeding tube taken from his nose and put into his stomach to make it more comfortable, we were told then that he would never eat or drink again. The following week his tracheotomy was removed and he was left with 3 bandages on his neck and was 3 stone lighter. After having the feeding tubs in for a few days, they said he was allowed to come home. We were given a weeks worth of food for him and the nutritionist worked out a feeding plan for us. It was difficult to adjust, we put the feed on overnight for 10 hours, and through the day, and we syringe some into his stomach. We have a good routine going now. This week Ian went for a swallowing test and we are trying him with some real food. He has to have 3 teaspoons of pureed food at meal times and a few sips of drinks, for the next 2 weeks. He must keep a diary for the speech therapist about how things are going. He then has to have an x-ray and a barium swallow; this involves them putting a substance down his throat with some dye in so they can see if it is going into his stomach and not down his airway into his lungs. We try to stay positive and hope that Ian will be able to eat and drink again. The hospital cant say yes or no as they have never seen a case like this before. Ian has extensive damage to his throat, which will take a long time to heal. Will keep you informed of how things are. Fingers crossed. UPDATE April 24, 2008 Ian is now eating and drinking normally. His feeding peg has been removed and he went back to work part time last week. He has put his weight back on (plus a little more). He still has no feeling in his ears or throat but we feel that is a small price to pay for his illness considering what he has been through. I still find myself looking at him and thinking it is a miracle he is still with us. Thank you for printing my story, it's nice to have a happy ending. Best wishes to all NF sufferers that are going through this terrible ordeal at the moment. I just hope you get more happy endings.