by husband John
In 1996 we had just moved into our new house on our farm in Central West NSW, which we had built with our own hands while living in a caravan. It was our dream home and we planned to grow old together there. Jane had retired from the Tax Office due to RSI (from typing) and just after that I was retrenched in November 1993. We had fairly good savings and already owned the farm where we were planning to retire in a couple of years anyway, so we moved up there. A couple of times early in the year Jane had got completely out of breath while working hard, and almost collapsed. A visit to the doctor could find no problem but after the second time she was told he thought she had angina and was referred to a specialist physician. There was a three month wait to see him.
After an initial examination, he told her that he thought she had primary pulmonary hypertension, but was unsure of the diagnosis as he had never seen a case, so we were referred to the thoracic unit at the RPA hospital in Sydney. After spending several days undergoing extensive tests including an echocardiogram, the diagnosis was confirmed in October 1996. She was put on CCBs, the only available treatment. We were advised that she was too old at 58 to be accepted for a lung transplant at the Sydney facility.
In 1997 we spent several months sailing our yacht up the Queensland coast and back. In 1998 Jane was referred by the Sydney specialist to the Melbourne Lung and Heart Transplant unit at the Alfred Hospital. It is clear that they did not expect her to pass the medical standards needed for a transplant because of her age, but she came through all the tests with flying colors and in December 1998 was offered a place on the Melbourne Transplant list. They also changed the CCB that she was on and added coumadin – the only medication that actually seemed to improve her. Early in 1998 she started to use oxygen. July 1998 was an important month as our first granddaughter was born, with us in Melbourne for her arrival, and both Jane and myself present at the birth. Also, while in Melbourne for this, we bought a wheelchair.
Also in 1998, we found the PHA, and Jane spent some time every day reading and writing on the message board. It became a lifeline for her, and we made many friends.
At the beginning of 1999 our younger son, his wife, and the new baby moved onto the farm to help look after Jane, and to give her the opportunity to know her granddaughter. (Raymond had just finished his degree, and was looking for a job) Every three months or so we had to drive the 1000km to Melbourne for a checkup. Usually we took two days to make the trip, as it took a lot out of Jane. In Melbourne we stayed with the other son, who fortunately lived only a few kilometers from The Alfred.
In August, just after Sarah-Jane's first birthday we made one of these trips, and they decided that Jane needed another test, so we stayed over an extra weekend, but Jane became quite ill over the weekend, and when we went in for the test on the Monday, after the test she was admitted to hospital. Her condition continued to deteriorate, and she was moved to the top of the waiting list for lungs. But matching lungs did not become available and she stopped breathing at 5am, just a month after admission, as I held her hand.
Jane's corneas were the only organs that could be used, and several months later I received a grateful letter from a lady whose sight had been restored.
The following Easter, with our older son, I drove 2000km to north Queensland, and chartered an aeroplane to scatter her ashes over Thomas Island, which we had visited in our yacht two years earlier.
Almost six years later I still read the PHA message board on an almost daily basis, contributing where I have anything useful to say.