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Ken’s Story by his wife Netta Ken was a butcher when we met in April 1956. We were both 18 years old. We were married in July 1958, and as Ken’s birthday was 28th June and mine was 11th July, we decided to marry on 5th July which was the week in between. I used to joke with him that I was much younger because he’d turned 20 the week before we married and I was still 19 (until the week after of course). We had 4 children – Michelle in March 1960, David in December 1962 and twins Debbie & Tracy in April 1967. Ken was a hard working man and didn’t believe in taking a “sickie”, not that he ever had a reason to, as he was always healthy. It was November 1982 when he started to complain about being tired occasionally and went to our local doctor who said he probably had an ulcer. He started on Tagamet tablets on 9th November 1982. After a few weeks we realized that he wasn’t any better so another trip back to our doctor who rang a specialist and made an appointment for that same day. Ken saw Dr Lee at Penrith, NSW, on 18th November 1982 and he put Ken into hospital immediately and put him through a range of blood tests, bowel tests, heart tests and chest x-rays. One morning Ken rang me and said “I can come home this morning, so hurry up and get me”. He was waiting outside for me, looking so drawn. When he got into the car I said “OK what’s the verdict”, his next words threw me for a loop so casually he said “They’re told me I have a rare disease that will probably kill me”. He handed me a piece of paper with the word AMYLOIDOSIS on it, that’s what they gave him and also said they know nothing about the disease except the life expectancy is not good and only a few people in the world have had it, - that was it. Dr Lee said he would start him on chemotherapy and he was to be admitted to Westmead Hospital, NSW, to start the chemo on 6th January 1983. The drive home (15 mins) felt like forever. We immediately rang his family and his brother Robert said 'you should have a second opinion', he rang every avenue until he spoke to Dr Graham Young and Dr Paul Vincent from Royal Prince Alfred Hospital, NSW, who said if we could have him at the hospital at 8am the following morning they would see him. He was admitted to RPA under Dr Vincent on 7th January 1983 and was put onto oxygen as he’d had trouble breathing; he went through all the same tests that he’d had in Nepean Hospital plus a few more – bone marrow test, light down the throat and head scans. They came up with the same conclusion AMYLOIDOSIS. They started him on chemo while he was still in hospital and he was really sick from it. The chemo was in tablet form Prednisone – Melphalan 2mg as well as Melphalan 5 mg. They discharged him on 24th January 1983 and his weight at that time was 8 stone 5 pounds. As time went on we were back and forth to RPA for blood tests, heart echos and check ups which really became so stressful for him. He became very aggressive to the x-ray people, telling them they were so slow and he hated waiting around the hospital to see the doctors. He also went through quite a bit of depression. He had more chemo in February, March, April and May but it only made him sick after every session. He was at home and I had to administer his tablets. I had a little book which I wrote down how many tablets each day he took for his chemo, I don’t know how I would have managed without the book. Each chemo session went for 4 days – for the 8 months he was sick he also had 23 other tablets to take for fluid, antibiotics, ulcers, bowels, potassium, heart, hiccups, sleep & pain, so that little book was a life saver for me. We gave him a bell to ring when he needed someone, which he rang frequently asking us to rub his legs or back. He had so much pain and with aching mostly in his legs and he also had a lot of swelling in his feet. He also had blood spots on his face and pockets of blood would form in his mouth and he lost his taste for food. Our local doctor Dr Ho was wonderful and he called in about 4 times a week to check on Ken. After 8 months of sheer hell, pain, vomiting and lack of breath, I decided he needed to have something to brighten him up and as his birthday was 28th June, I thought we could have a family BBQ. We arranged it for Sunday 26th June 1983 but it didn’t go well for Ken, he came outside for about 1 hour and then said he wanted to go back to bed. The day really drained him and he told me he didn’t enjoy the BBQ at all and he didn’t want anymore birthday BBQ’s again – but Thanks anyway. On Tuesday night 28th June (his birthday) he rang his bell and asked me to rub his back which I did for 20 minutes, the time was 12.30 am and he then told me 'that’s enough go back to bed'. Sadly he passed away in the early hours of the morning (29th June) the day after his 45th birthday. His funeral was held on 4th July 1983, the day before our 25th wedding anniversary. To this day we are still wondering what started this terrible disease. We were told that “anything” could have started it, even to have been born with it. That’s about the only information the doctors could give us because they didn’t know anything except it was fatal. Over the years we tried to think what may have been connected to his illness. He’d had hepatitis, broken collar bone, fractured skull, a small tumor removed from his lip, had the sweat glands from his underarms taken out. We even thought he might have caught a germ from Bail in 1981, as he had “Bali belly” over there and also had his teeth all out and a plate put in. I believe from that day he seemed to go down hill slowly. This of course is guesswork because we “JUST DON’T KNOW” It's 23 years this June 2006 and the reason for me writing this story came about before Xmas 2005. My cousin Greg Scheul passed away and when I asked what he died of, I was told it was a “rare disease” casually I said “Oh it wasn’t called AMYLOIDOSIS was it”. When I was told “yes” I went cold, I couldn’t believe it could touch my life twice – especially as Greg and Ken were not related. I met up with Greg’s wife Margaret who put me in contact with Ellen Reid. Mrs Reid asked me if I would write a story about Ken, as I believe there is a wonderful website now which is such a help for Australian AMYLOIDOSIS sufferers and their families. Unfortunately I had nothing or no-one to help me in 1983. Much more has come to light over the years, so I hope my story can help in some way, even if it can alert the medical profession. I was told by doctors that Ken was about the 11th or 12th person in Australia to have the disease and I know since 1983 that many more have contracted it as well. Who knows how many had it prior to 1983? Ken missed so much in life. He never got to see any of our 9 grandchildren and 1 great grandson. He was much too young to go at 45 years old. On 19th October 1984 I was told about Dr Brian French who was attached to Manly Hospital and was doing a study on Amyloidosis. I wrote to him to get some information but unfortunately I had no reply. So for the last 23 years we have been in the dark until my cousin Greg’s death. Thank you for your patience by reading “Ken’s Story” In Loving Memory Kenneth George ORR 28th June 1938 – 29th June 1983 Your Loving Wife Netta
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