Richard Bindahneem

2009

By sharing my story I hope others see the difference organ donation makes.

I had my heart and lung transplant on the 26th of June 1992.

Until May 1991, I was completely unaware that I was sick. I just thought I was unfit. I put it down to a pretty badly ruptured disc injury I sustained in 1981 and having to stop all of my usual activities so my back could recover.

During this time, I qualified as an interior designer and worked for a company in the city at the top of Thomas Street and all our clients were based in the Terrace. I would walk to appointments and meetings; up and down the stairs at the office for exercise. About three months in I started catching the free clippers because I couldn’t walk the distance. Time went on and I got to the point where I just couldn’t get up the stairs. I would stop half way and pant. People would ask if I was ok and I’d always say that I was fine. I didn’t take any notice of what was happening until one day when I was at home in the garden. All of a sudden I got light-headed, sort of like when you get up to quickly from sitting or lying down but it was worse and it lasted for a minute or so. That’s when I knew something was wrong and I needed to get checked out.

My GP did blood tests and this and that but didn’t find anything so I just kept doing what I was doing. I remember about a week later my son Ricky got quite sick and had to be taken to Princess Margaret Hospital. I was still feeling terrible but I put how I felt aside and only worried for my son. Two days later when I had to return to work the tired and exhausted feeling returned. That’s when I went to see a cardiologist Dr Ireland and had my first ultrasound test...  I remember sitting in the doctor’s office with my partner at the time and Dr Ireland said:

“I’ve got two lots of news - one good and one bad. Which one do you want first?”
“The bad news,” I said.
“The worst case scenario for you is that you will probably have another three months to live.”
 “What?” I said.

He explained my condition - primary pulmonary hypertension - but it didn’t sink in. I was still thinking about his comment of only having three months to live.

“So, what was the good news?” I asked.
“We might be able to extend those three months to six with medication,” he responded.
“But we need to do more tests straight away.”

I was at his mercy really. He admitted me into Royal Perth Hospital and his diagnosis was confirmed that night by an angiogram. When he came to me and told me the situation I was very numb, very, very numb. The first thing that went through my head was…

“What have I actually lived for? I’m 30-years-old and what have I done?”

I wasn’t so much worried about me and what I had achieved for myself but who I might leave behind like my son Ricky who was only five-months old at the time.

My doctor said the only way they could do anything for me was to list me for a heart and lung transplant. I didn’t know anything about the procedure other than I needed it.

Close friends and family came to visit me in the hospital that night and I just couldn’t tell my father what was going on. A lot of thoughts went through my head that night and I was very concerned about the people I would leave behind. It was this that affected me more than anything else.

In the end I left it to the Almighty and believed that what would be would be. That was the only way I could look at it and from that time onward I kept that focus.

“Whatever happens will happen - I can’t dwell on it.”

Till this day that is what kept me going as well as my son Ricky who was my ‘little inspiration’.

After the tests were all done the doctor knew the seriousness of my condition and he wanted me to get over to Melbourne for a transplant. I couldn’t go on my own; I was pretty bad by that time. To make things worse my back started to play up as well. I remember being at home trying to breathe; I couldn’t sit, sleep, and lie down without struggling. Things I was going through I would not wish on my worst enemy. I couldn’t shower, I couldn’t put on my own shoes and socks without feeling totally exhausted. It was the simple things that I had previously taken for granted. I had three days to prepare myself before they flew me to Melbourne.

The day we arrived in Melbourne there was an industrial strike. I had to be in a wheelchair with my oxygen tank next to me and a doctor by my side. We arrived at the airport and because of the strike or some reason they couldn’t take me out by the normal route so there I was being taken down to the tarmac by forklift. I could see the funny side of it.

From there I was taken to the Alfred Hospital and that was when it hit me. I was enclosed by four gloomy walls. Back at home I had family and friends around which meant I was ok, psychologically anyway. At the Alfred, I realised the severity of the situation and got bogged down with the thought - “This is it!”

About three days later I really went downhill. I was getting to a really critical stage; the doctors knew it and had me in intensive care. They tried some new treatments and also put a state-wide search out for organs. I was zonked out while all this was happening. Luckily for me on the tenth day a donor was found.

The transplant process started on the 26th of June but there were complications. While the doctors were transferring me which included taking my organs out and preparing me for the new organs, my heart stopped. Doctors tried to get my heart going again, twice without success. At this point they asked my partner at the time what they should do. It was impossible for her to answer and at the same time I can appreciate that the doctors didn’t want to waste the donated organs. They went back into surgery and both my anaesthetist and surgeon decided to give it another go. To my benefit they were able to get my heart started again and the transplant was a success. To this day whenever I see my surgeon or anaesthetist they say:

“This was the guy we had to toss a coin for. Lucky for him it landed on the edge.”

I was at the hospital for at least a week in intensive care before being transferred to the ward. I suppose it was quite a normal reaction that the first thing I wanted to do when I woke up was to pull all the tubes and everything else out. They had to tie me down at the beginning, until I settled. I also remember I was in constant excruciating pain because of my chest having to be literally cut open.

For the first few weeks I was in bed and I was under observation for another three months. Hospital staff really should have been doing some physio work with me while I was in bed because when I finally did get out of bed I basically collapsed because I had no strength left in my legs. I had to learn to walk again and I couldn’t drive because I had to wear a foot splint for two or three weeks.

When I came out of hospital in Melbourne I was still pretty bad but what inspired me the most was seeing Ricky walk for the first time at 11 months of age. That kept me going and gave me something to live for.

After three months in observation, I came home to Perth and tried to get back to my normal life. I knew it wasn’t going to be how it was before and I realised I had to be realistic about it.

My employer left my job open for me which was very good. As an interior designer you work with your hands and my main concern was that I might not be able to hold a pen again because the drugs I had taken post-transplant caused hand tremors. Despite this, I went back to work to prove to myself I could do it even though I may not have been able to draw.  I lasted about a month but felt guilty because I couldn’t do a complete task. The company was very helpful but I realised I had to be realistic so I decided to work from home. By working at home I could work at my own pace and if I needed to go to the hospital for a check up or any other reason, I could, without feel bad. It was then that I started a distribution business buying and selling dermatological products and still did my interior design work on contract.

My illness and transplant added to already existing stress levels for my partner and me at the time. She had just started her dentistry career and with everything I had been through she was constantly by my side. After my transplant she decided to bite the bullet and start her own dental practice. With all the stress and the anxiety, it built up to conflicts. We were married for about five years when we decided it wasn’t worth hanging on to something that wasn’t working. Our dissolution of marriage took place in July 1998 and went our separate ways. I became a sole carer for my son and we still live in the family home.

Family support had always been there, but still it has been a very trying times for both my son and I. My father, who passed away in late 2008, was very much involved in the Iranian-Burmese community and because of him I got to know a lot of people in our community which keeps me busy.  My ancestors come from Iran, I was born in Burma and my birth-mother is Burmese.

Post transplant I try to live a normal life as possible and try to do as much as I can to keep myself occupied both mentally and physically. My transplant allowed me to travel. I have been to Thailand, Burma, Iran, Pakistan, Malaysia and Singapore. I never thought I’d have the opportunity to go to all these places. I got that chance after my transplant. Some people said I was crazy to do it.

My first trip was to Thailand three years after my transplant and then to Burma, which some people would say it is the last place on earth they would go especially if one was on immuno-suppressant medication. Despite this I still went because my specialist knew I wouldn’t do anything silly. I made sure I knew where the major hospitals were and the Australian embassies in case anything happened. When I was in Burma, my birth place, I visited the local markets and villages. I thought it was pointless going unless I saw the real Burma. Funnily enough some of the places I went even the locals wouldn’t go. I didn’t eat off the street or anything like that but being there really opened my eyes and made me realise there is a lot more to life.

I learnt to appreciate life a lot more not only because of my transplant but because I realise how fortunate and lucky I am compared to most people.

One of the most challenging things for a transplant patient is to acknowledge the donor and the family. We live on for ourselves and for them in gratitude because without them we would not exist.  I tried to contact my donor family on my 10th transplant anniversary. I wrote a small thank you letter with a card and sent it through the transplant co-ordinator where I was transplanted. I have not received a response back which I understand and respect their privacy. Sometimes families of donors do not want to be contacted because they are trying to put the past in the past. At the same time there isn’t a moment or a day that goes by without me thinking and being grateful for their selfless gift.

I met my Malaysian wife Jency almost seven years ago (2002) through a very close friend David Heymans. Dave and I been friends for many years. It goes back as far as Dave’s last days of his lecturing career in college, where I was studying. I had the opportunity to work with him while I was still a student. We became close friends and kept in contact with each other over the years. When I came out of hospital, David by coincidence knew Jency and he used to talk a lot about me. She for some reason thought I must be about David’s age (senior) so when we first met she was quite surprised to know that I wasn’t what she expected. From there we started meeting at conventions and designer exhibitions and became friends and of course our relationship grew from there. We were married on 14th April 2006.

Jency being Chinese-Malaysian, we weren’t sure how our lives and families would work out, especially considering I am a Muslim and her parents are Buddhists. We found them to be very welcoming. Her parents came to Australia for our engagement and met my parents for the first time. Jency’s father had a lot to do with Muslims in Malaysia so our fathers got along really well... Jency and I travelled to Malaysia for a traditional Chinese tea ceremony hosted by Jency’s parents. We served tea to our elders and in return we were given a little red packet. They also gave us a huge reception which we did not expect. It was really nice; we both get along well with each others family. Jency tries to go back to Malaysia each year to visit. She has been a great support for me. She was there in the background during my separation from my first wife. Not only is she a stepmother to my son but she is also a great friend, which I think is priceless and precious.

My community work…
I was the Chairman of Heart Transplant WA for a couple of years and that was where I met Yvonne Bali. I was happy to be involved with Yvonne as she strived to establish the Heart & Lung Transplant Foundation of WA Inc. It took her a lot of courage and hard work for the establishment to come to fruition in 2004.  Yvonne invited me to be a Board member and I have been on the Board as a patient representative ever since.

I feel it is important for transplant patients of all kinds to support one another. This support was invaluable when I had my transplant. When I was transplanted in Melbourne, heart and lung transplant patients were all together instead of been separated by departments. Every Wednesday we would meet and share each others stories. It was good because some of the stories gave us hope and a better understanding to our new life. The WA transplant community was once a lot more close knit than what it is today. There seems to be a gap between the heart and the lung transplant patients now which is a real shame. I truly do believe that we should be more unified.

I like to keep myself active with Transplant Australia. I represented WA in badminton, table tennis, volleyball, long jump, track and field and chess at the 2004 Games in Adelaide & the 2008 Games in Perth. I had been training for the 2009 Transplant Games in Queensland in August until my aunty passed away at the end of 2008 and a month later my father died. That knocked me for six but I had to keep going. I play badminton with the seniors in Queens Park each Wednesday as part of my training. They didn’t know I was a transplant patient at first, not until they read about me in the newspaper.

I won four silver and three bronze medals in 2004 and two silver and two bronze at the 2008 games. I am aiming to improve on these performances at the 2009 games.

What I hope for the future…
My son Ricky and I have grown very close together over the years. He just started university at UWA which I am very proud. He is academically a high achiever and a gifted piano player and composer. He has won several awards during school for; Music, Mathematics, Physics, and Chemistry and he wants’ to become a doctor. I truly hope he gets that opportunity.

I still work from home as an interior designer and on my dermatology distribution business. I am an Australasian distributor; I work mainly by telephone, fax and email. There is a good future in this business but at the moment I am working fairly low-key. I firstly want to support my son to get up on his own two feet, which won’t be too far away. Then I hope to do more travelling and build the business further.

I am also committed to giving back to the community anyway I can by assisting the Foundation in fulfilling its mission. I take every opportunity to promote the Foundation and to educate others about transplantation.

I have been very fortunate in terms of medication side-effects and my general well being. June 2009 will be my 17 year anniversary of my transplant. Associate Professor Eli Gabbay thinks I maybe the longest surviving recipient in WA.

Not many people in the community know about me and I am not one to brag. A lot has happened; I am proud of what I have achieved and hope to do even more God willing. I have been very fortunate and will forever be grateful to my donor and the family for this second gift of life.

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