Catching up with Perth's Shirley Tower... 8 years on
Lung transplants are now performed in Perth, but back in 2001 Shirley Tower had to make the decision to leave Perth and move to Melbourne while she waited for a double lung transplant.
Shirley's appointments are at Sir Charles Gairdner Hospital (SCGH) in Perth under the excellent care of Dr Weng Chin and Sue Moray who look after the post transplant patients.
Shirley and her husband Bob have recently returned home after a three month journey in their camper van which took them across to Melbourne and then up through NSW to Far North Queensland, returning via Outback Australia. Along the way they caught up with friends and called into The Alfred.
What led to you needing a transplant Shirley?
I had Bronchiectasis all my life as a result of never getting over whooping cough when I was two years old. At 18 I had the middle lobe of my right lung removed at Prince Henry Hospital in Sydney. I have never smoked and always looked after my health. I had attended the Respiratory Department at SCGH since 1971 when my husband and I moved here from Sydney. My lung function got so bad and my quality of life was so poor, I really got very depressed. I knew one good dose of flu could be fatal so I dreaded every Winter.
I worked to keep myself busy and this kept me positive most of the time. I worked as a part time Doctor's Receptionist for 16 years and finished work one month before going to Melbourne for the final assessment for the transplant program. Most of the patients at the Doctor's Surgery just thought I was retiring and no-one knew I was so sick. My nasally voice was just passed off as hay fever and that terrible cough got a few comments. Little did people know it was permanent.
Funny thing about lung disease I never really looked sick. But if you saw me trying to walk up a slight incline or do something physical it would be the give away. My 75 year old neighbour would call in every morning and see me struggling with my household chores and sometimes make the bed for me. She would also help bring in my shopping out of the boot of the car on occasions. However, I was very stubborn and tried to be as independent as possible.
Dr Ryan arranged an appointment for me and my family to meet with the Melbourne Transplant team (Dr Trevor Williams and Jane Harris) on their visit to Perth in March 2001. Dr Williams advised that my lung function was so poor I should seriously consider going to Melbourne as soon as possible. We were told the average waiting time was 12 to 18 months. A few days after the session with Dr Williams, I decided to go to Melbourne. It was a very emotional time for our family.
The Move to Melbourne
Bob and I started to get things in order to go to Melbourne with Bob taking leave from his job as an Engineer (eventually he lost his job as it could only be held for six months).
Arrangements were made for us to go in mid June 2001 and we were very apprehensive about arriving in Melbourne for the start of Winter. Sue Moray from Sir Charles Gairdner Hospital had arranged accommodation for us in a Unit in St Kilda. Soon after arriving I went into hospital for three days of tests. After waiting two weeks for the test results, I was accepted for the Transplant program. In the meantime our car arrived from Perth and we started to plan how we could occupy ourselves during the waiting period.
The Waiting Period in Melbourne
While attending the exercise classes I bonded with the other nine WA patients and their families. We had a lot in common all being away from home, family and friends. After our classes we had our little coffee group in the cafe at the hospital and all became friends. The Melbourne weather was always a talking point as the sky was almost continually GREY, so it could get quite depressing.
We did of course meet some people from other States and the locals! In the gym I met Len Hain who was also waiting for a transplant and we became good friends. It turned out that we had the same AB blood group and eventually he had his operation on my Birthday. Len's wife invited us to their house for a Melbourne Cup BBQ and during our time in Melbourne their hospitality was greatly appreciated.
We also renewed our friendship with a Melbourne family we had met many years previously and spent many hours playing cards. Their hospitality was also very much appreciated.
It was just a matter of keeping busy and filling in our spare time away from the hospital. Living in a Unit and not working for the first time in our lives was a bit of a shock - we suddenly had so much spare time. We contacted the local Council to find out what activities were available and also joined the St Kilda Library.
Being a woman I kept myself busy but generally after my hospital visits I was worn out. We bought a second hand computer in Melbourne so I sent lots of emails home and also made cards. I also did lots of crossword puzzles and read books to keep amused. We went to the movies at Southland Shopping Centre regularly.
Bob did a few courses with U3A (University of the Third Age), meaning for us oldies. Each week he also did computer volunteer work for the Smith Family charity at its head office in Collingwood.
Being a keen sailor he was lucky to get a weekend position crewing on a yacht at Sandringham Yacht Club. He sailed on a trailer sailor for over a year and they did very well in the races. Bob called it gentleman's sailing on Port Phillip Bay compared to the racing in WA with our Fremantle doctor, as it gets pretty rough in Perth.
So besides his own twice weekly gym session and doing most of the household chores, Bob was kept busy. He also had to learn to cook as I had always spoilt him - unfortunately I was the Guinea pig! He did cook a great spaghetti and also made a great healthy Date and Carrot loaf which was always handy to have in the freezer.
Every couple of months we would go away for a few days to help retain our sanity. It was quite a challenge to do little trips on the cheap. We would find on-site caravans for about $35 a night and also stayed in cheap friendly motels. One trip was to the Great Ocean Road to see the spectacular coastal scenery. Other trips were to Bendigo, Ballarat, Bright and the snow country (at summer time) Falls Creek and Mt Buffalo, Wilson's Prom (the most southern point of the mainland), Gippsland Lakes and Phillip Island which was my favourite. We found that Victoria is a small State and there are not huge distances to travel.
I had to pace myself and found I couldn't walk to see a lot of the sights because of my breathing or it was cold and wet. Bob would head off on the walks while I sat in the car with my flask of tea and read. But at least I was out in the country enjoying the different scenery. We really enjoyed our travels as it was like recharging our batteries and we went home to the Unit refreshed.
In addition to our sightseeing trips and local tram rides, we had lots of interstate visitors. It was like a Holiday Unit. Our daughters and their partners came to Melbourne several times and enjoyed the variety of nearby shops and the activities for young people. We always tried to live each day as normal as possible and not dwell on getting a phone call from the hospital.
At 10 months (April 2002) I got a phone call from The Alfred to come in as a possible candidate for a transplant. After being prepared for surgery Dr Williams came to my room and informed me he wasn't happy with the match so I was sent home. That was my 'nerve wracking' false alarm.
Finally after waiting 15 months, I received a phone call. At this stage I needed a nebulizer to settle me down as this felt like the real thing. I was later told I requested the anaesthetic in a wine glass! It was now 25 September 2002.
The Operation, Recuperation and Returning Home
After nine hours in the Operating Theatre I was taken to ICU. I was later told I was in ICU for 26 hours - I don't remember it.
I was in Ward 5 East in a room adjacent to the Nurse's Reception Desk. I initially felt very lonely in the Ward and didn't want Bob to go home. The Alfred was terrific and supplied a folding bed near mine and he stayed in the hospital for three nights.
They supplied meals for him but I don't think either of us got much sleep. During the first few days in the Ward I felt like I was in outer space and Dr Helen Whitford commented that I looked as high as a kite - so they decided to remove one of the substances from the epidural and from then on I started to feel something like normal.
My sister-in-law, Coral was first on the scene having flown down from Sydney to provide support for us, which was really appreciated. A couple of days later our daughters flew over from Perth and it was great to see them, they really cheered me up. Bob and the girls visited every day with their picnic lunch and they were a bubbly noisy lot. My first outing was across the road to the park in a wheelchair and it was great to be out breathing the fresh air for the first time. However I didn't feel safe with them pushing the wheelchair like a formula one racing car.
After about 10 days I had my first bronchoscopy. The all clear was given and I was allowed to go home to the Unit in St Kilda. Our visitors finally went home. We were now on our own for the three month recuperation period. I was still feeling nauseous and after changing from Cyclosporin to Tacrolimus, overnight I started to feel much better and was able to eat and not be sick.
As my operation was on 25 September 2002 the mandatory three months fell due on Christmas Day. As we had already been in Melbourne for 18 months we were very keen to be home with our family for Christmas. My final bronc was on 16 December and I had a doctor's appointment on 18 December to be given the results and the all clear to go home. We already had a flight booked to Perth on 20 December pending the results.
When the day came we were driven to the airport by a friend only to find Melbourne weather living up to its reputation, being 17 degrees and the airport blanketed with fog. Some in-coming flights were diverted and after some delay we finally boarded the plane and took off for Perth. It was very emotional arriving home and being met by our family. When we arrived it was 42 degrees in Perth, a big shock to the system. A few days later I went to Scarborough Beach for a swim and really enjoyed the clean fresh air and ocean water.
So what about your trip - was there a highlight or was it all good?
We have been back to The Alfred twice since my transplant and it's always great to see as many of the transplant team as possible. I particularly enjoyed catching up with Louise in the gym as we spent so much time working with her. She really encouraged me to work hard. I feel forever grateful for the treatment I received from the transplant team.
It is always nice to catch up with friends but particularly Len Hain as we have so much in common. We were sorry to miss his 70th Birthday celebration as at that time we were in Far North Queensland (a bit too far away).
It was very emotional to go to the 'Remembrance and Thanksgiving Service' which was being held during our stay in Melbourne. We enjoyed it immensely.
We had a great time touring Australia for 13 weeks and loved being on the road and in the outback. We did approx 16,000 km and got to visit many friends and relatives on the East Coast. Two of the highlights were visiting Kangaroo Island and Fraser Island.
Where to from now?
I feel very fortunate as my general health is good and next year we are planning more travel. In the meantime we are busy with our family and the grandchildren. We are also members of our Avan Club and have 5 weekends away each year. All this is possible because of my second chance. Every day I am thankful for my transplant.
Bob and Shirley at Newcastle, NSW
