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 John was born in England and from an early age was involved in sport; he played Rugby until he suffered a serious shoulder injury which prevented him from continuing. John served for 2 years in the British Army and was part of the peace keeping force in Korea. He loved the physical training aspect of the army, and became a PT instructor.
In 1996 – 1997 John had an operation for carpel tunnel. In 1999 he was referred to a Cardiac specialist for slight shortness of breath and some loss of energy. In 2000- 2001 John was treated for arterial fibrillation and in 2002 a pacemaker was fitted. Early 2003 John’s condition was slowly deteriorating and he was sent for a number of tests, Cat Scans, Cgs, Ultra Sound & Gall Bladder. He had a throat infection and neck problems. But also his energy levels were dropping at an alarming rate. At this stage I was getting quite concerned and demanded to go back to the Cardiologist. John underwent Electro Cardiogram and other tests and was diagnosed with AMYLOIDOSIS.
They were not sure if this was primary or secondary and a bone marrow test was carried out with no sign of the protein entering from that source.
The Haematologist and Cardiologist advised John of the seriousness of the illness and predicted only 2 months to live. They decided to start John immediately on treatment of Melphalan (Chemo) and steroids Unfortunately the steroids had a devastating effect and John experienced Bipolar disorder, so seriously he was admitted into a Psychiatric Intensive care unit for 10 days. John’s energy levels continued to deteriorate with symptoms such as severe itching, bloating and fluid retention. The treatment of Melphalan and Steroids ceased straight away, and John was mainly medicated for fluid retention, the Bipolar and heart tablets. After a few weeks John had recovered from his Biopolar and was then given anti-depressants , he continued with long sleeping, itching, and bloating until 2004 and with nothing to lose the Haematologist started John on Thalidomide, just a small dose, in the hope there could be some improvement and give John a chance of more quality of life.
After a few months with no change the dose of Thalidomide was increased to eight capsules every night with a small dose of Melphalan. These drugs were administered to John over a period of nine months from November 2004 to August 2005. John was deteriorating and his sleep was increasing to eighteen hours a day with me assisting John to shower and dress, and his appetite was also low. We contacted the GP and specialists and it was decided to stop all medication, except for the fluid tablets. The change in John was quite dramatic - he showed a little more interest in life and was able to have some conversation, he would read the newspaper and watch some television. I was able to take him out for short drives, and he was now able to go to the bathroom unassisted. His family managed to witness some improvement for a short time. My daughter Helen administered Reiki healing at different times throughout his illness, I think John found this a comfort, and enabled him to relax during his restlessness.
John started to deteriorate again but the symptoms were different in that he got very little sleep and was very restless his legs were like ice and he felt the cold so much.
John passed away peacefully in the early hours of Christmas Morning, December 25th, 2005.
John’s treatment was under the diagnosis of a Cardiologist and a Haematologist and GP in Perth. To date (2006) there are no clinics or specialists that independently and solely specialise in Amyloidosis in Australia. The internet offered information for the families concerned, from America and the United Kingdom, that such Amyloidosis clinics and specialists do exist overseas, which, if the disease had been caught earlier, different treatments could have proved more successful.
He survived for 2½ years, slightly longer than the specialist predicted. I always have felt if the diagnosis had been much earlier I think the drugs could have controlled the increase of protein around John’s heart and his quality of life would have been so much better. The information on the internet from the Mayo Clinic confirms this belief. John’s mother lived to the age of 91 years and his father is still alive today at 95 years old.
Wife: Maureen Butts and daughters: Susan and Helen and families,
Perth, Western Australia.
In loving memory of
Husband, Father and Grandfather
John Harold Butts
11.07.34 to 25.12.05
12 February 2006
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