They say nothing good happens after 2:00am, but for western Sydney man Jeremy Henry, an early morning organ donation has given the 41-year-old high-school teacher a new lease on life.
On Saturday, 4 February 2023, under the care of the Westmead Hospital A6 Renal Ward and Clinic, Jeremy received the gift of a donated kidney and a pancreas.
“Words can never express the gratitude I have for the person who donated their organs to me; I know someone had to die so that I could live,” reflected Jeremy.
Five months on, “life is returning to somewhat normal again” for Jeremy who returned to work in a reduced teaching load in May 2023.
However, the journey to get to this point was not an easy one and is a journey that is all too familiar for others waiting their turn to receive a life-changing organ donation.
One year after graduating from university, self-proclaimed introvert Jeremy leaped out of his comfort zone and applied to teach English in China. It was during the medical examination for his resident visa that he realised his kidneys were only functioning at 60 percent.
“The nephrologist said my reduced function was due to hypertension and my blood sugar levels being too high over a long period of time, but that I could still live a normal life at 60 percent function,” said Jeremy.
Jeremy was diagnosed with diabetes type 1 at age 13, so had experienced blood sugar level challenges for 28 years.
“One of the main causes of kidney failure in type 1 diabetics is high blood pressure and poorly managed blood sugar levels,” he explained.
With the green light from his doctor and insulin and blood pressure tablets packed into his luggage, Jeremy set off on a “life changing” adventure to China on 10 September 2017.
Jeremy said his two years abroad were “the best I’d ever had in my life” and gave him “lifelong friends from different countries”.
“I ticked off all my China bucket list items including The Great Wall of China and The Forbidden Palace, I spent Christmas 2018 in Vietnam and travelled to South Korea, Thailand, Hong Kong, Mongolia, Vietnam, Japan and Hawaii,” he said.
During his time away from Australia, Jeremy said he noticed no further decline in his health, but in June 2019, unknowingly left China with his kidneys failing.
“When I returned home, my GP ran some general diabetes tests which led to further testing by the local nephrologist,” he explained.
“These tests showed that my kidney function was down to 25 percent and that I would sadly have to begin dialysis in the very near future.”
In December 2020, with just 12 percent kidney function, Jeremy started his first round of kidney dialysis and was placed on the transplant list for a donor kidney and pancreas.
As a full-time high school teacher, Jeremy was given the opportunity to do at home dialysis following 12 weeks of in-hospital training.
I live alone, so learning how to put two large needles into my arm every second day and problem solve the machine if something happened was a real challenge, but definitely more convenient than having to visit the hospital, especially in the middle of the COVID-19 pandemic,” said Jeremy.
Every Tuesday and Thursday from 6:00pm to 11:00pm and Saturday and Sunday from 9:00am to 3:00pm, Jeremy sat and watched his blood be filtered.
“Life on dialysis was hard and dialysing every second day whilst trying to maintain a full-time teaching job took all my time and energy,” he reflected.
“I couldn’t go away for more than one at a time, so I missed out on holidays and special events like Christmas; I was restricted to a small group of food and drink that were low in potassium and phosphate and I was constantly tired and I looked very sick and pale.
“I also really struggled with it mentally – at times I just didn’t want to be here anymore; life completely changed.”
On 24 January 2023 at 11am, Jeremy received the long-awaited phone call from the Westmead Hospital transplant team that he would receive a kidney and pancreas transplant within 24 hours.
“The phone call was a total surprise and was not expecting it,” said Jeremy.
I was at work at the time and was in shock, nervous, scared and was ready for it to happen.”Jeremy Henry
Jeremy said the drive home to pack his bag was the “longest most thought filled time of my life” with “tears filling my eyes out of both joy and terror as I didn’t know what was happening from here on”, he said.
Admitted into hospital and waiting to go into surgery, Jeremy received a devastating phone call from the transplant coordinator that the organs couldn’t be accepted, and he was sent home feeling “sad, shocked and upset”.
That same night around 10:30pm, Jeremy received another phone call to come back in, and was this time given a 50/50 chance of receiving a donation. Unfortunately, this transplant was not meant to be either.
“After a second time being sent home, I had so many mixed emotions and was feeling lost,” he reflected.
“I wasn’t sure when that next phone call would come, and the doctors said it was very rare to get a second call that quickly, so to not expect a third call to come for a month to three months, or maybe more.
“When the third phone call came only one week later, I was not expecting that call at all.”
It was third time’s a charm for Jeremy who finally received the life-changing surgery at Westmead Hospital on 4 February 2023.
“On the day I came into the hospital for the third time, I was afraid and at times had tears in my eyes because of the unknown, and my family couldn’t be there prior to my surgery, so I was alone,” said Jeremy.
“But the nurses there that night calmed my nerves and the doctors made me feel safe and that everything was going to be alright.”
Due to his lack of immune system post-surgery, Jeremy spent his first five days in an isolation room, and then was moved onto the ward for his last four days in hospital.
After his hospital stay, Jeremy returned to the Westmead Hospital A6 Renal Ward and Clinic every day for six weeks for blood tests, kidney and pancreas function monitoring, and to be administered any required IV antibiotics, potassium, magnesium or saline for rehydration.
Once released from Westmead Hospital, Jeremy was transferred back to his specialists at Liverpool Hospital where he spent the next seven weeks having bi-weekly blood tests followed by doctor appointments to “get levels right to help my body have a fighting chance to keep the new organs for a long time”, he explained.
During these 13 weeks, Jeremy experienced complications such as fevers; a “mystery” infection which required a PET scan, CT scan, heart ultrasound and bone scans; spiked creatine levels which indicated potential kidney rejection, and a case of gastro.
“I’ve learnt to just take each day as it comes and live my new life which doesn’t involve being on a dialysis machine every second day or having to take insulin to balance my sugar levels,” said Jeremy.
“Transplantation surgery comes with its risks, and I’m now more prone to cancer due to tablets I must take for the rest of my life, but I finally have a future to look forward to again; soon I’ll be able to travel overseas, see friends and family outside of western Sydney and possibly move interstate now that I’m no longer locked to a hospital or a machine.
“To the doctors, nurses, specialist, transplant coordinators; you have changed my life forever.”
Around 1,750 people are currently on the waitlist for an organ transplant and a further 14,000 on dialysis due to kidney failure.
“To the family who lost the person who donated the organs, the sadness I have for them often brings tears to my eyes, but because of this gift, I promise to look after the organs that were donated to me and forever hold the organ donor in my heart,” said Jeremy.
One person donating their organs means up to seven people can come off the wait list.
If you smoke, drink or have an unhealthy diet you can still register to be a donor. You don’t have to be in perfect health and age is not a barrier.
The entire process only takes one minute to sign up at donatelife.gov.au or just three taps in the Medicare app.
For more information visit: www.donatelife.gov.au/all-about-donation/myths-about-organ-donation.