Jessica: I am grateful, I am blessed - a life with diabetes
Jessica Kirikava shares her story of grit and hope and remarkable recovery.
My brother Jantz David aged four, my grandfather Kirikava Kirikava, and myself aged nine years
My name is Jessica Lorraine Kirikava, born November 1, 1982 in the Tokoroa Hospital maternity ward. When I was born, my grandparents Teremoana and Kirikava Kirikava, who had migrated to Tokoroa in 1956 from the Cook Islands, fell in love with me and brought me up as their own. My mother did not give me up – I was just taken in by my grandparents.
I was a much-loved little girl. I had my mother, my grandparents and my two aunties. I called my grandparents “Mum” or “Mama”, and “Dad”.
I was also brought up with my cousin Jantz (pictured above) who was five years younger than myself. I called him my brother. He was a talented young man who had a passion for music, just like his father, my uncle Teaunui A Ota, also known as Crash.
My uncle was a musician and a ladies’ man. He could play any instrument that he picked up and had an absolutely beautiful voice. He was one of the best drummers known. He sadly passed in 2003, of an asthma attack.
Jantz followed in his dad’s footsteps and was becoming an awesome drummer as well. Along with some of his schoolmates he created a band called A1. He also created a few songs with some other friends, where he branched out and was the lead singer.
My beautiful gentle giant brother passed because of a tragic work accident two years after his dad. He was only 17 years old.
At the age of three, Dad noticed that I was drinking a lot more, going to the toilet frequently, was sleepy all the time, and wetting myself a lot. The doctor said I was most likely a Type-1 diabetic.
I can remember going home to Billah Street, our family home for over 50 years now, where everybody was waiting for us and I can vividly recall everybody breaking down and crying. In their eyes I was dying because nobody even knew what diabetes was.
I spent a few weeks in Waikato Hospital, where my family learnt all about diabetes and how to manage it. They had to learn how to inject me with insulin twice a day, and how to test my blood sugar levels. At this time diabetes wasn’t really known about, and it was very rare for children to have diabetes. Doctors found that I may have had a weak immune system and that my pancreas, the organ that produces insulin, did not work at all, making me a Type 1 diabetic. For the rest of my life, I would have to inject myself with insulin to stay alive.
Being Cook Islanders, we love our food. I was strictly not allowed any lollies, cakes, ice creams, fizzy drinks and so on, because back then in 1985, that is what we were taught, that sugar is BAD! Therefore, we ate a lot of carbohydrates; lots of rice, bread, bananas, taro, potatoes and so on.
My grandmother was an amazing baker and cook. She was a cook at the International Takeaways Shop, at the old pub, and at the Braeside Camp. She was well known for her pae (yellow bread) – it had a hard crust on the outside that she lathered with her water and sugar coating to give it a shine. And the inside was a beautiful sweet fluffy yellow bread. She was also well known for her Cook Islands doughnuts and sponge cakes. As a young person I would watch her prepare the dough for these doughnuts and yellow bread. It was a long and arduous process. Mum would wake up every two hours during the night to mix the dough to ensure it would rise properly to give it that fluffy texture. I was one of those young people who saw how much hard work it was and did not want to learn it. I now regret that decision very much.
My dad was also a keen gardener. At Billah Street our front yard was filled with beautiful orange lily flowers and our backyard was filled with every kind of fruit and vegetable you can think of. Most of the backyard was covered in grapevines. Every year Dad would pick the grapes and Mum would turn it into the sweetest grape juice. We would have dozens of bottles of grape juice stored in our kitchen, which was normally saved for special occasions. This grape juice was also very bad for my diabetes.
During my teenage years, I really didn’t look after my diabetes. In a way I wanted to fit in with others. I would eat anything and everything. I became lazy with my insulin, taking it late or not taking it at all. I tested my bloods when I wanted to test them, which was not very often. I missed doctor and specialist appointments because I knew I would get in trouble for my high blood levels.
One of my mamas who lived next door was Kaungake Teaukura. We called her Marm. She had been on dialysis for many years. She would come over home to visit and watch Days of Our Lives with my mama and they would talk for hours and hours. She always warned me that if I did not look after myself, I would end up on dialysis. Being a young person, I just thought, “Whatever”.
Fast forward 25 years. I found myself on dialysis, just like Marm had told me.
THE BOOK, AND JESSICA’S GRANDMOTHER TEREMOANA KIRIKAVA, BORN AUGUST 7TH, 1936, IN THE VILLAGE OF ARORANGI, RAROTONGA (PHOTO: SUPPLIED)
The book, and Jessica’s grandmother Teremoana Kirikava, born August 7th, 1936, in the village of Arorangi, Rarotonga
In mid-April 2014 I received a call to come home to New Zealand straightaway. Mama had been given days to live. Her kidneys had failed. At that time, I was living in Perth, Australia. I booked the fastest trip home. My mother and I made our way back home to see Mama.
This strong woman had been given a couple days to live but lived another eight days. I am forever grateful for that time with her. And happy that she saw me carrying my first child, Anneka Moana Kirikava. I was four months pregnant when Mum passed and will always be sad that Anneka never got to meet her Mama Tere.
During the time of the funeral, I was very tired, my legs had swollen, and I just generally felt unwell. I put it all down to the amount of travelling I had done in the last few weeks, and of course being pregnant.
I woke up in the early hours of the morning on April 23rd, unable to stop vomiting. I was also having a hypo (low blood sugars). My aunt came into the lounge to see if I was OK. She told me she was going to call an ambulance, and being the stubborn Amuri woman I am, I told her I was fine and not to call them. I ate some jellybeans to raise my blood level, but I could not get my level above 1.6 mmol.
I asked my aunt to call the ambulance. I was worried about my baby. I ended up at Tokoroa A&E with the team working frantically around me. The doctor came over to me and said, “You are a very sick young lady. Are you normally this pale?” He took a photo of me. My eyes were so puffy. I was as white as a ghost.
I was put on oxygen as I was taking 56 breaths a minute, and I had to have several chest X-rays with a heavy metal apron on to protect my baby from the radiation. My family started gathering at the hospital. I was told I would be airlifted to Waikato Hospital as my condition was critical.
All I knew was I was very unwell, but I was in the best place for myself and my unborn child.
At Waikato Hospital the air ambulance doctor gave the nurse a handover and said, “This is Jessica, she is a 31-year-old female, presenting with heart failure.” My chin almost hit the floor.
I was in shock. How this could be heart failure? My mind was going a million miles per hour.
I spent two days in HDU in Waikato Hospital. I spoke to the cardiac specialist there who told me I was most likely going to be transferred to Auckland City Hospital, as they were more equipped to look after me. At 8.30pm the Westpac air ambulance arrived to pick me up. This would be my first night of five months in Auckland City Hospital.
After two days of blood tests, CAT scans, MRIs, and biopsies, a large team came to see me, and I was told that I had had multiple organ failure. I had suffered heart failure, kidney failure, and both my lungs had filled with blood. They informed me that I should call my family and anybody important to me to come and be with me as there was nothing else that they could do. And if by some miracle I was to survive, my unborn child would not live past 24 weeks and the treatment I would undergo would not allow her to survive.
I started praying. Growing up, church was a part of our lives, but we did not attend regularly. I can always remember attending all the church batons up [fundraisers] with Mama, and winning some bags with sugar, tins of corned beef, cabin bread and so on.
My grandparents, and especially my dad, always taught us that God is everywhere and to pray wherever and whenever you needed him. Right then I needed him. I had never prayed so hard in my life.
One week later I was still alive.
I always think back to that time, hearing that news. I do not think I took it as badly as others in the same situation would have. I had a little cry, but thought, “I’m not dying, I don’t feel sick and I’m having a baby, this is not right.” I did not let my family know what the team had told me. To me they were wrong. There was no way I was going to die. To this day I think back and still wonder, was I stupid – to not have told my family and potentially lived out my last days on my own – or did I just have a very strong mentality and God on my side?
I truly believe that it was my upbringing – being brought up by very strong-willed family and of course my faith in God.
Every specialist you can think of came to do their daily rounds. I was told, “Jess, we have some good news. Your kidneys have started showing some function again, so we will increase your medication, but we need to reduce your fluids intake to 600mls a day. But because of the treatment your baby will not make it past 24 weeks.”
For the next four months, I lived in the transplant ward at Auckland City Hospital going through many, many, different forms of treatment and tests. Every week that went by, the doctors were amazed that not only was I alive, but my baby was still growing and surviving as well. Every second day I would have scans. Although baby was growing very slowly, she was not showing any signs of stress. So, they just kept up with the treatments and monitoring.
On July 30th, 2014 at 11.08am, I gave birth to a tiny, but healthy baby girl via emergency C- section. She weighed 1510 grams and was six weeks early. Here she is.
Baby Anneka
Just to hear her screams was an absolute relief. She was healthy. I had Anneka on my own. Luckily, my team of doctors and nurses who had become my family over the past four months were in there with me and I did not feel alone. As soon as she was born, they lifted her up over my screen and said, “Our miracle baby is here.”
They took her into a small room as I had two cysts removed from my ovaries. As they worked on me, I could hear her screams. The absolute joy I felt to hear those cries! A half-hour later they brought my little girl over to me to meet her. All wrapped up in white linen and with a little white hat on. She looked perfect.
I was unable to hold her as I had drips hooked up on both arms for the operation. The surgeon told me that she was perfect, a little tiny, but she was definitely a feisty one, just like her mum he reckoned. I gave her a little kiss and she was taken to NICU and I had to wait two days before I could see her again. Anneka and I then spent the next four weeks in NICU.
Anneka Moana, named after my Aunty Annie and Mama, was an absolute fighter. We were told we would most likely spend up to three months in NICU. We were back home in Tokoroa in four weeks.
I decided to stay and bring up Anneka in our family home in Tokoroa. I wanted Anneka to be surrounded by family and to grow up immersed in the culture. So, at six months old I enrolled her in Te Ara Metua Punanga Reo, which is a bilingual child centre. Anneka attended there until she started primary school.
Over the next three years, my kidneys started losing function again. Around Christmas in 2016 I was given the news that my kidneys were only working at 10% and I needed to start dialysis immediately.
I was booked in for surgery to have my catheter put in, so I could start peritoneal dialysis – most people would know it as being “on the bags”. I started dialysis in early January 2017.
I was then put onto the transplant waiting list. Because I had been born with Type 1 diabetes and was on dialysis, I was eligible for a SPK Transplant, which is when you receive a pancreas and a kidney at the same time. For this to happen I sadly had to wait for a person to pass in order to receive the gift of life from this person.
At 4am on July 6th, 2018 I received the call that every person on the transplant list anxiously awaits. They had a donor for me, and I was to make my way up to Auckland City Hospital immediately.
I was quickly assessed to ensure I was healthy enough for the operation. At 7pm I went in for surgery. It was an overwhelming feeling, knowing that from this moment on my quality of life was going to change forever and I would have the chance to see my daughter grow up.
My transplant operation was a success. When I woke up in the morning, I was told by my team that the organs I had received had come from a very healthy donor, as the organs were amazing to work with.
I thanked God and all my angels for watching over me during my surgery. And more so my donor. Before this person passed, they chose to save other people’s lives by donating their organs when they passed. I am so blessed to have received two healthy organs from this person. I will be forever grateful.
I spent the next 12 weeks in the transplant ward. I had a traumatic recovery. Constant nausea and vomiting. I had to be fed through a nose tube and all my medication had to be put through a second nose tube. I was lucky to have my mother there as my support person. I absolutely feel for her. Having to see me go through so much pain. Having to bathe me, and wake up during the night to turn off my machines that beeped if the transfusions were finished, and finding nurses to come and help me. I am forever grateful to her for being there for me.
After being in the ward for over two months and not seeing any improvements, I did lose the motivation and enthusiasm to get better. I had a cry and prayed for God to help me through day by day, to heal me so I could go home and start enjoying this new life I had been given.
Soon after, the nausea and vomiting started to ease. I slowly started having minestrone soup and was able to walk one lap around the ward. The doctors started seeing progress. My prayers had been heard. One month later, although I still had mild nausea, I was discharged. I was healthy enough to go home.
As soon as I made it home to my family, the nausea and vomiting stopped completely. All I needed was my family. Through my medical journey I always felt the presence of my grandparents. I would wake up in the middle of the night like I could feel somebody sitting on my bed. Or the night I went into a diabetic coma: I found out later that I was continuously ringing the nurses’ bell, but if you know me, I never ever rang that bell. I honestly felt my angels were watching over me that night.
My daughter Anneka, Aunty Elizabeth and myself
Although my grandparents are gone, they left me a precious gift. A gift that they moved to Tokoroa for and worked hard all their lives for. They left me Billah Street: our family home. I am thankful that through this journey, that because of my grandparents, I did not have the burden of paying a mortgage or rent. I have a roof over my head for both my daughter and me.
It has now been three years post-transplant. I no longer have diabetes and I am thriving. I am now employed by South Waikato Pacific Island Community Services as a Pacific Island Community Health Worker and look after people in our community with long term health conditions just like myself. I feel absolutely blessed to be in this position and to be able to give back to our awesome Tokoroa community.
I am grateful, I am thankful, I am blessed.