Had My Life Ended?

For most teenagers in Australia during the 1970s, life was great. They were discovering what life was all about by going to discos, parties, sporting events, and of course the beach.

In 1978, I was 17 years of age. After Dad took me to the GP, my health got progressively worse. I threw up at least once or twice on most days and couldn't hold down any food. I got cramps in my legs and didn't have any energy.

My uncle had a heart attack and passed away in South Africa, so my mum had to go to the funeral and support her family. My brother Pearse moved home to be with my dad. Dad wasn't sure what was wrong with me, just that I was pretty sick.

I got worse, and my dad got more worried. He had a tendency to think that things would be fine and being sick was only temporary. After all, the GP had said that I was fine. Dad tried giving me different food. I believe he thought I might be allergic to what I was eating, possibly because the GP suggested as much.

I saw the GP in May or June. By November, both my ankles were swollen about three times their normal size. I hadn't seen any other doctor at that point, but I was definitely very sick. I had no idea what was going on. It was getting near my exams and I needed to study, but I couldn't focus at all.

The day before my life was turned upside down, I went to school as usual. The first lesson was maths. As I sat down, my teacher said – I thought jokingly – 'You look a bit green today, Phil. Are you OK?' I laughed it off and prepared for the class.

Before the end of the class, a head office representative came into the office and said that Dad had made an appointment for me to see another doctor. I had to meet him at the front office after class.

I was totally unaware of what that appointment would mean for my future. It certainly changed my life.

As my dad drove me to the doctor, he was unaccustomedly quiet. When we got to the surgery, we were taken straight in. The nurse took my blood pressure and I gave a urine sample. After checking out my ankles, the doctor rang the Royal Prince Alfred Hospital to discover when I could see a specialist. He then took a blood sample and told me I needed to stay home from school and come back the next day for the results.

I didn't sleep very well that night; I was throwing up, having leg cramps, and the usual symptoms. At least we were due to see the doctor in the morning. When my dad and I walked into the surgery the next day, the doctor had already arranged me to be admitted to Royal Prince Alfred Hospital Renal Unit for tests. He wanted my dad, who was getting very worried by that stage, to take me to the hospital. We did so after stopping at home so I could pick up the stuff that I thought I would need for one night. I was wrong ... When I was admitted, the medical staff did a whole lot of tests, as they suspected that I had a problem with my kidneys. It looked like I was in end stage kidney failure, but they weren't sure if it was permanent. I was in shock, and I think my dad was in shock as well. I can't remember much about that first day, apart from the fact that part of me was relieved. Another part of me was angry at the first doctor for diagnosing a sprained ankle when my health issue had nothing to do with a sprain.

The main problem at that point was that I was not passing any urine. I was just retaining f luid. The toxins in my blood were very high. They decided the one way to bring the toxins down quickly was to put me on peritoneal dialysis.

In those days, peritoneal dialysis was quite primitive. They inserted a hard plastic cannula, or tube, into my peritoneum. The peritoneum is a membrane that lines the walls of the abdominal and pelvic cavities in the human torso. In dialysis of this kind, the cavities are filled with a liquid that draws toxins and waste products through the membrane, so they can be removed. I was not entirely clear about the process. The urea and creatinine building up in my body were probably impacting my thinking.

My first peritoneal treatment went on overnight. The worst part was when the f luid was removed from my peritoneum. They used a small pump to suck on the inside of my abdomen, which was very painful. These days peritoneal dialysis is a very gentle treatment used by a large number of dialysis patients as part of their normal regime.

The one thing that was still working for me was my appreciation of attractive women, especially nurses, and there were a few. The nurses seemed to enjoy looking after me, which I didn't mind at all.

After more tests and probably a week or so of dialysis treatments, the doctors had enough information to confirm what was wrong with me. I expected good news. There was another young bloke in the same ward who had come in with end stage renal failure as well, and they had just told him that it was only temporary. He was going to be fine. In my head, that was the way it was going to pan out for me as well.

When the doctors came in to tell me and my dad the results of the examinations, they basically said that my kidneys had shrunk, which they believed was due to what they called 'reflux neuropathy'. That was the cause of my end stage renal failure. They couldn't understand how I had not come in earlier – my blood results were extremely toxic, and any normal person would have been dead. So in one sense I was lucky.

I thought they could do something to increase my kidney function, and I would be fine like the other young guy in the ward. But it wasn't meant to be for me. It could have been a scene from Star Trek, but sci-fi did not come to my rescue. On the positive side, though, the other young guy really was fine.

After they confirmed that I had no way of living my life without some form of dialysis or a kidney transplant, our family had a lot of things to consider. Mum and Lin returned from South Africa, my brother Josh came back from Penang, and Luke returned from where he was working in Fiji.

This was one of the most emotional times that I can recall in my life. My whole family was there to support me, and I didn't feel so alone.

I really liked music when I was 17, and my favourite musician was James Taylor. Josh brought me a James Taylor tape from his travels in Penang. It had the song 'You've Got a Friend' on it. I remember lying in bed, listening to it over and over again, during the lead-up to the doctors telling me about my options. I used to just cry because I was so worried, but I was also happy that I wasn't alone.

Each member of my family offered to provide a kidney for a transplant. But I felt that I was still young and tough, so I could handle a short period on dialysis. I felt I would get a transplant without too much of a problem. I also didn't want to affect their lives. So I decided to go on dialysis.

As part of that process, the nurses showed me what dialysis actually meant. The first thing they showed me was what the dialysis machines were, then how dialysis worked. For a 17-year-old, walking into the dialysis ward at Royal Prince Alfred was like walking into some torture chamber. But the nurses were fantastic and very caring.

It was a huge shock to me that everyone else on dialysis was old and I was only 17. It made me feel very uncomfortable. I don't know why. Maybe I felt that I was just too young and kidney failure was for old people. As the years went by, I met many more young people who were on dialysis.

Haemodialysis was a more effective routine treatment than peritoneal dialysis in 1978. I chose haemodialysis. A surgeon had to operate on the veins in my arms so that I could be hooked up properly to the machines. I had two fistulas inserted, one in the right wrist and one in the left. The right fistula was external, meaning two plastic tubes were joined internally to a vein and an artery, then brought through the skin near the wrist to be joined to the machines externally. I could dialyse using the external fistula exclusively until the internal, or AV, fistula on the left was working. The fistulas enabled the blood to get out of my body, circulate through the dialyser, and return to my body. Eventually I would learn how to insert needles into the veins in my left arm for a less exposed dialysis circuit, but the fistula there needed to mature for a few months before I could use it.

I spent the rest of 1978 in hospital, getting better and trying to convince my mum and dad that things would be OK. I am sure it was very difficult for all my family to handle that I was on dialysis and things might not be as normal as they used to be.

I think the hardest time for my family was Christmas 1978, but I can't remember what we did that year. I was still very sick. I don't think I got a pass out of hospital for the holiday.

The surgeon eventually removed the external fistula when the nurses could switch me to using the internal fistula. Initially, that process was the most painful thing I had ever felt. I needed to have local anaesthetic injected into the skin before inserting the dialysis needles. That made me feel that I was not going to be able to do it myself. The needles were 14- or 15-gauge (about one-eighth of an inch) in diameter and were over an inch long.

I needed to focus. I was determined that I was going to have a life outside the hospital. It was what I wanted most, and the only way to get it was to dialyse myself at home. I told the doctors that I would like to go home on dialysis but I would need my mum to help me. Mum agreed eventually, and I was trained how to insert the needles, maintain the machine, and dialyse over the following two to three months.

Before the medical staff would agree to let me dialyse at home, they needed to confirm that I was capable from a psychological perspective. I spoke to the team psychiatrist, to determine if I was at risk to kill myself. There had been incidents overseas in which patients had killed themselves via their dialysis machines when they got home, because they didn't want to be kept alive by machines.

My session went well. At the beginning, I said that I had one question to ask him at the end. He agreed. The psychiatrist was a very easy-going character; I guess he needed to be that way because of his occupation.

At the end of the session, he said, 'So what was that question you wanted to ask me?'

I said, 'Well, what do you reckon – am I crazy or not?' He smiled and said, 'You're just as same as I am, Phil.'

From that point forward, I felt at ease with the psychiatrist.

It was good having him as part of the treatment team, because it was not easy dealing with dialysis at 17, let alone dealing with my parents. Though I loved them with all my heart, I could not discuss some things with them. I used sessions with the psychiatrist like counselling sessions to deal with issues like convincing Mum and Dad that things would be all right and they shouldn't worry about me so much. I knew it was natural for them to be concerned, and I did appreciate the concern, but sometimes they were too much.

The most important things to me were that I wanted to live as normal a life as I could, and I did not want to have a negative impact my family. I was glad that I was the one going through this and not one of my siblings. The James Taylor song 'You've Got a Friend' hit home then and now. My brothers and sister were there for me, and are still my best friends.

Even though my family probably couldn't believe this was happening to one of us, I felt that I would survive and could handle what was coming my way, at least for a short period. Unfortunately, it ended up being a lot longer than any of us imagined.

I know it was very hard for Mum and Dad to accept that I was on dialysis. They didn't really know, initially, how to help me. My relationship with them had to be open enough for me to be totally honest with them. Sometimes it was hard, but we got there in the end. I think they eventually realised I needed to be free to make my own decisions. I knew I could always count on them to give me their opinions, which was fine, but it took some time for them to understood that I needed to be in control of my own life.

Dialysis for young people was not very common when I started. Most patients were older and had experienced renal failure due to overuse of pain killers. I think my case may have been an eye-opener for that renal unit that dialysis was not just an old people's problem any more.

There may be young people going through similar struggles as they read this book. I hope my story helps you understand that your life has not ended. There are ways to have a good life with kidney failure, given support from family and friends.

Finding a Balance: The First Year at Home

Learning to put needles in to myself was probably the hardest, strangest experience I have ever had. I knew I had to do it if I was going to have any sort of life, but each time I knew I would inflict pain on myself. I felt as if I was punishing myself for some reason. It took a lot of patience from the nurses. I would shake when I handled the needles. On many occasions, I missed the vein on the first try and had to do it again. If I couldn't face it, one of the nurses had to put the needles in for me.

At some points, I thought I was never going to be able to do it. But eventually I got better and didn't 'bomb' myself. That was the term for getting the needle into the vein and going straight through the other side of the vein, which was very painful. Hirudoid cream, used to get rid of bruising, was my best friend for many months.

My training included how to use the dialysis machine and what to do if something went wrong while I was on dialysis. The next step was to bring Mum on board, because Mum was going to need to learn the basics to help me if I got into trouble. I was nervous about this at first. No matter how much I loved her and knew she would do everything she could to help, I felt dialysis was my responsibility. Mum did her best to learn and was always there to help – but she never learned how to put in the needles. By the time I went home, I preferred to do it myself anyway. I was getting pretty good at it.

One of the main problems that could occur was bombing myself and having to find another site to put the needles in. If I couldn't find a site, I had to go into hospital. I could not be without dialysis for more than two days, as the toxins and fluid in my body would build up to a point that would make me very sick. I wanted to stay out of hospital as much as I could.

The other main problem was passing out in mid-treatment because of low blood pressure. I had to come off dialysis before I passed out or I could potentially kick the bucket. Identifying the feeling of impending unconsciousness was very important. I needed to have confidence in my ability to recognise the signal and start the process of coming off the machine, with Mum's help.

The best way to describe this feeling is that it's similar to the feeling one has when given a sedative. The medical staff tell you to count back from ten. Most of us never get that far, but have experienced the shaky sensation that kicks in around number nine. That's the signal. The trick is not to get to the point of passing out, which in my experience happens around number seven. You don't have much time.

After being on dialysis at home for a few months, I became quite independent. My relationship with my parents went through many changes during those initial months. I became more up front with Mum and Dad, and they found it hard to get used to this part of being on dialysis. Previously, I had done what I was told and followed the line. That was no longer the case. It took them quite some time to realise that I needed to do this for myself. I think this adjustment made my relationship with Mum and Dad a lot better in the end, but it was hard initially. My brothers and sister also had a bit of trouble understanding.

We were lucky enough to have an area in our rented house where the dialysis machine could be installed. By the time I was ready to leave the hospital, the machine and supplies were all set up and ready for me.

From the time I first went into hospital to the point when I came home was about eight months – a long time being away from friends, family, and the rest of my life. It was time for me to figure out what I was going to do now.

One of the first things to do was to see if I could get back to school and catch up. I was lucky: the school I attended, Cumberland High School, gave me an assessment so that I could move to my final year. But it wasn't going to be easy catching up on all the material I had missed. I was finding that I couldn't concentrate very well, and I had trouble remembering things. I used study guides to help me, but I knew I wouldn't do very well.

My last year in high school, 1979, was also the year I had planned to get my driver's license. With everything else that was going on in my life, I managed to pass my driving test. I bought my first car, a Ford Anglia.