Janelle Watson interview with Larine Statham-Blair

Janelle, a retired local primary school teacher, was diagnosed with type 1 diabetes as a child which developed into renal failure. She says carers like her husband Terry are the heroes of organ donation.

Larine (L): Hi Janelle, thank you for meeting with me. I want to get an idea of you and your journey. You mentioned on the telephone that you had diabetes as a child, is that correct?

Janelle (J): Well, I was first diagnosed when I was around seven-and-a-half, eight-years-old. One of the signs was an unquenchable thirst, which is a common symptom. It was the 1970s and diabetes really wasn’t that common. I had gone to a number of different doctors, had lost a lot of weight, and at first they were unsure what was wrong. I would often sneak out to the tank for water, I was that embarrassed. We were living in Gladstone at the time, and I remember going to an elderly doctor who gave me the ‘doctor stare’. I think he just knew. He asked my mother to smell my breath, and if it smelled sweet. Next, there were needles in my arm, there were no glucometers back then, and the results came back with diabetes. My blood sugar was through the roof. I was put straight into hospital and fought diabetes for 42 years.

L: Tell me about that, 42 years is a long time to suffer from such a serious disease.

J: Oh yeah, it was pretty hard. You miss out on a lot of things as a child, not being able to sleep over your friends’ house and things like that. I went through a stage of realising that I am different, but I was lucky to have a good group of friends that knew about my condition and understood it.

L: How did your family take the news of your diagnosis?

J: My Dad didn’t take it very well, he felt guilty and thought it was his fault. He shouldn’t have thought that way, but he wanted to fix it. He tried a lot of different things to help me, took me to naturopaths and other places before I began taking insulin. My mother was a nurse, so when I was diagnosed, she took control of the injections.

L: That would’ve been hard also for your mother, because even though she was comfortable giving needles, no mother wants to inflict pain on their child.

J: Definitely, and I had a fear of needles, even before diagnosis. But now, no worries, you can give me a needle and I don’t care.

L: Now let’s fast forward to your adult life. When did you meet your husband?

J: We met when I was 35. We were married six months, and then there was one particular night where I fainted, and my husband Terry took me to the hospital. My kidneys were only functioning at 10 per cent and next thing you know I’m starting dialysis. That news was really hard to take, you know it’s life or death. It all felt like a dream, this can’t be happening because aside from fainting, I was feeling well.

L: Do you think if you’ve suffered from a chronic disease your whole life, your tolerance for feeling unwell is probably blurred?

J: Yeah, I think so. It took me a while to accept this was my life going forward, at the time. You either get connected to a machine for three-days-a-week, or get connected during the night. I chose the latter, so I could continue working and try to lead a normal life. We brought the dialysis machine home and Terry learned how to use it. I wasn’t taking much of the information in, as my mind was in a fog. My creatinine level was over one thousand, whereas a normal person sits around seventy. I’m lucky Terry took charge, as he does. He read the manual in a matter of days, learned how to operate the machine. It was just one of those times in life where you just have to do it. All I could see were all these tubes and bags and stuff and I thought ‘I’m never going to be able to do this’. But I did.

L: You mention your partner Terry, he must have been a rock for you?

J: Oh for sure, I want to make that point. Support and carers are so important. They are the backbone of everything, people in my circumstance could never cope without them.

L: I find it remarkable that you continued to work while you were receiving treatment. You had dialysis in the evening, are you awake during the treatment?

J: Yes, but it takes a while to get used to it. It’s quite noisy, and makes a ‘whoosing’ noise, that’s why I call it Puff Daddy. It would definitely disturb my sleep patterns.

L: You mentioned to me earlier that you had dialysis for two-and-a-half years. What was it like to receive the phone call that a kidney was available?

J: I was driving to work, and I remember it was eight minutes past eight in the morning. I was driving along the Ring Road, and I answered and it was Paul Robinson, the transplant coordinator. I knew straight away this was the call, and I just started bawling. He said ‘we have a kidney and pancreas down here waiting for you’. Instantly, you go through all of these different emotions. It’s overwhelming to be honest. But you don’t have time to dwell, you have to get home pack your bags, and fly down. And then post-transplant, you go through many emotions. I went through grief, as I thought of the person who died that allowed me to receive these organs.

L: So you were grieving for that person as well? Do you think that’s part of your personality Janelle, that you’re an empathetic person?

J: Yes, that’s just who I am.

L: That’s beautiful though, and I guess a natural way to feel. I know you have the option to reach out to the family. Have you chosen to do that?

J: I did, but I haven’t heard back.

L: I guess it would be hard, and people deal with grief differently. Do you know if they read your letter?

J: I hope so. Actually, my husband wrote a beautiful poem, and we put it into a card. This is the poem:

Your Gift
Words can’t erase your pain or sorrow,
Your gift has given us hope for tomorrow.
It’s been hard to watch my lovely wife
Slowly lose her zest for life.
I just want to let you know,
Our life together will continue to grow.
When you are sad and asking why,
Remember your gift has made us fly.
I don’t know if life is planned or fated,
Why things happen can’t be debated.
I do know what you have done,
Makes our life again full of fun.
Words can’t explain how I feel,
Knowing your loss is had and real.
It makes me feel quite conflicted,
The joy of life can’t be predicted.

L: That’s such a beautiful poem. How long has it been now since your transplant? And how is your body coping with it?

J: It’s been four years on the 19th of October. And yes, everything’s working beautifully. I still pinch myself to this day. I just think ‘Oh my God, what a change in life’. Life changing and life saving at the same time.

L: The other people we’ve spoken to say that one of the big things for them is that they feel they need to do justice to the person who gave their organs and live life to the fullest. Is that how you feel?

J: I think everyone needs purpose in life, and I feel I’m coming around to that now. Knowing that someone’s done this for me, a complete stranger….So yes, I want to give back to the community and society as much as possible.

Read the full Gift of Life photo essay story The gift of life

Special thanks to local organ donation specialist nurse, Karen Jenner.