Recipient story: Penny

Penny Hilsman was 15 when she was diagnosed with type 1 diabetes.

“No one in my family had type 1 diabetes. My family lived in Mexico at the time, and my sister and I were visiting our grandparents in the United States. I had lost weight and was always thirsty, so my grandfather suggested to my grandmother that I be taken to the doctor to be checked for diabetes, but she hadn’t organized an appointment.

While we were in Mexico, I was admitted to hospital with extreme nausea and vomiting; I couldn’t keep anything down. At the hospital they gave me glucose, which was the worst thing they could have done as I started to experience Kussmaul respirations, which is deep and labored breathing often associated with a state of uncontrolled diabetes. I almost didn’t make it through the night.

My parents came and got me out of the hospital and we went to a physician’s we knew and that’s when I was officially diagnosed with type 1 diabetes. He could tell from my extreme thirst and by double-checking my sugar level that I had diabetes. He immediately started me on insulin, saving my life.

It took a while for everyone in my family to get used to my having type 1 diabetes – myself, my parents and my sister Glenda all had to adjust. There wasn’t a lot of education about the disease at the time; we were provided a very strict diet sheet to follow and that was about it.

We were struggling financially and back then it was very hard to get fresh food in Mexico. After the fruit and vegetables were paid for out of the family budget for my new diet, the rest of my family had to make do with what they could afford.  I have a strong memory of the time we got a large punnet of strawberries, which was a very rare treat, living in a tropical country where oranges and mandarins were more common. My mother forgot about my diet and put sugar on all of them so I didn’t get any!

As I got older and my diabetes progressed I had increased difficulty swallowing, experienced locked jaw and clenched teeth and confusion during incidents of hypoglycaemia. One time I had a dizzy spell on Swanston Street in the City (Melbourne); someone had to give me some tea with sugar to revive me.

My condition became quite unstable and I was losing my cognitive function, so I lost my driver’s license and had to quit my job at St Vincent’s Hospital in Melbourne, where I was working as a dietitian.

I then moved out to Colac to help my sister out on her farm as her husband had passed away and she had the farm and a child to look after. I was at a real low point, passing out about three times a week. Sometimes I couldn’t get up, or I would be disorientated and experience a lot of confusion. I couldn’t be left alone as sometimes I lost track of entire days.

I found out about the Islet Transplant Program from an endocrinologist I had been seeing in Melbourne for many years. I was 57 and she said there was nothing else we could do to manage my diabetes, which by then had been diagnosed 42 years earlier. She suggested the Islet Transplant Program to me, saying it was the only remaining option available.

My brother-in-law looked up information about the Program and read about the side effects. My father initially said no to my participation, as he said we couldn’t afford it and there would be a lot of costs for us as we lived in a rural area. He didn’t understand the Program paid for pretty much everything, including all of the medication I would require.

However, my mother said yes from the start – she would spend hours at night looking after me and my diabetes had had a huge impact on her. My sister Glenda said when new things come along, it’s worth giving them a try. Naturally, I was still worried about the procedure, even with all the information about it out there. I was told things like ‘You won’t be diabetic anymore’, but it took three appointments with Dr Goodman at St Vincent’s Hospital Melbourne before I agreed to participate in the Program and was put on the waiting list.

After agreeing, it took a year to retest everything and determine that I could not be stabilized in another way before I could actually be put on the waiting list.

As I don’t have many antibodies against islets, it was easier for them to find the right donor islets for me compared to some others on the waiting list, but it still took about a year. I understand others have had to wait longer. I’ve now had two islet transplant procedures and have been off insulin for 4 ½ years. I can actually feel my blood sugar drop now, whereas before I could never sense my change in blood sugar levels.

Suddenly my full-time focus has become all about diet and exercise, as they are my only two methods of managing my blood sugar levels. The transplants haven’t been a cure, but there’s no question I made the right decision in having them.

I don’t know what the future holds in terms of my health; as a result of the transplants it could include skin cancer, renal failure or eventually rejection. You just have to do your best to preserve your health and walk the line. That said, my hopes for the future of type 1 diabetes medical research would be a cure that doesn’t involve side effects of medications – that would provide great emotional and financial peace of mind for the patient.”

Penny’s sister Glenda adds, “Before the islet transplants, we couldn’t leave Penny alone for 5 minutes. She now has freedom and independence, and a feeling of worth. The Program has saved her life, and provided her with a measure of dignity.”