Laurie O’Donnell wrote his moving story in October 2017 in the last few weeks of his life.
Laurie O’Donnell was the brother of Vince O’Donnell.
My name is Laurie O’Donnell. I am 65 years of age and three and a half years ago after having neuropathy problems (peripheral nerve damage to hands and feet) and shortness of breath it was suggested that I go to a heart specialist whereupon he conducted stress tests, ECG’s, an ultrasound of my heart, a fat saturation test and finally a biopsy. These tests showed there was fluid around my heart and a thickening of the heart muscles. I was referred to a Hematologist who diagnosed me with Amyloidosis. He advised that there were different types of Amyloidosis and it was very important to ascertain the type I had so it could be treated accordingly. Accordingly a sample of my bone marrow together with blood tests were sent to Sydney with results finally diagnosing Familial Amyloidosis, (ATTRv) mutation Thr60Ala. I believe my strain is the Irish strain.
I have always been an extremely active person involved in surfing, fishing, caravanning tennis fixtures, a very physical employment and active family life always going camping. Within months, I started experiencing symptoms of very low blood pressure, breathlessness and sharp and burning pain in my feet due to the peripheral neuropathy. I tried to keep on with my employment and tried to keep physically active but this was becoming harder and harder and I eventually had to cease my employment, my tennis fixtures and even give up my fishing as I was having trouble trying to pick up my legs to climb the ladder of my boat.
I attended the PA Hospital and the head of the Amyloidosis Centre Dr. Peter Mollee discussed options to help or stop this disease from progressing and give me my life back. He advised that my heart had been severely affected by the Amyloidosis so a heart transplant would not be an option nor a liver transplant. Diffusional was suggested as this could slow the progress of the disease. I started on this but within a period of about two to three months tests showed that it was affecting my kidneys so this was ceased.
My wife and I were under the impression that if you were sick there was always some drug that would help but I was being told that my disease was terminal and, for me, maybe there would be some trial in the future that could help. So this became my only hope and over the years my family and I have prayed for this miracle to happen. I have heard of trials being done overseas but still nothing was forthcoming for Australia.
I am no longer the man I was. I cannot walk even a few steps, even with the aid of a walker, without getting breathless let alone try to walk a slight incline. My blood pressure is so low that hospital staff get concerned, my skin is paper thin and breaks open allowing fluid to leak from anywhere that it can find out of the sores on me, my heart gets weaker and the muscles continue hardening causing an irregular heart beat. I have no dignity at all as I cannot control the many gastric bouts that I have each day that come so fast that I can’t make it to the toilet and knowing my wife has to clean up after me or help me off the toilet or a chair because I do not have any power in my legs to get up. I no longer go to family gatherings or out anywhere in case I soil myself in front of others. I have a peg in my stomach as my weight is down from 80 kilos to 51 kilos. I try to stay positive always hoping for a new trial to come but depression is starting to control my mind (as well as the Lyrica clouding it) as time marches on and my life slips away always waiting for a miracle. My family suffer each day and I can do nothing to help them only hope and pray for a miracle not only for me but for all Amyloidosis sufferers, my children and my grandchildren. Please help us and give us our miracle.
Laurie died peacefully in the Wesley Hospital, Brisbane in November 2017 surrounded by his loving family.