Real life Sophie’s Choice – why I wrote The Donor
If the phone rings in the middle of the night, I always assume it’s because someone has died in my home country of Australia . It’s always a relief if it’s not the case. Ten years ago, it was the case. Someone had died.
“Hele,” my brother, Fitz, said over speakerphone. “We got the phone call. We’re on the way to the hospital now.”
“Can I speak to Sarah?” I asked.
“She’s too upset,” he said. “She can’t stop crying.”
I hung up and cried too. Strange really, because I hadn’t even known the person who died. Fitz hadn’t known the person either. Nor had Sarah.
We were crying because – after six years on the waiting list for a kidney transplant- Sarah had finally received the phone call she’d been waiting for. Someone had died. And this someone was about to save her life.
Sarah found out she had Alport syndrome when she was a teenager. The disease, which damages tiny blood vessels in the kidneys, was caused by the union of Sarah’s mother and father. Of the five children in her family, three had inherited Alport Syndrome.
So, a family of six…
Three healthy sets of kidneys.
All three sisters – Taina, Lisa and Sarah – started dialysis and joined the waiting list for a deceased donor transplant.
After a long wait, Taina, the eldest, had three transplants. They all failed. She would not be offered a fourth.
Eventually, Lisa received a deceased donor transplant. It succeeded.
Sarah, the youngest of the girls, endured a similarly long and tortuous journey. After she began dialysis and joined the transplant waiting list, she bought a mobile phone and a pager so she could be contacted immediately if a kidney became available. She carried her phone and pager with her everywhere she went. She never let it out of her sight. She rubbed it like a pregnant woman rubs a bursting nine-month belly. She always wore clothing with pockets, so the phone was safe and accessible. She couldn’t take holidays any more than an hour from Melbourne as the travel time would render a donated kidney unusable. A few close-to-home trips were done in the early years as a calculated risk and were full of worry and dread if the phone was flat, out-of-range or left in the room.
It would take three years before she got the call, they told her.
During those three years, Fitz drove Sarah to the dialysis unit on the other side of Melbourne, where she reclined three times a week, four hours at a time. They struggled to find new entertainment and interesting meals during dialysis. Tiredness, sickness and cramped conditions caused by needles in the arm and a tangle of blood lines prevented any meaningful study or work during dialysis.
Sarah’s fistula, which had been fitted prior to dialysis, expanded the veins causing a very pronounced, unsightly lumpiness. If injured from a fall or a severe cut, the fistula could cause a rapid bleeding-to-death as it would be impossible to stem the flow. Consequently, things like diving, horse-riding and contact sports were off limits. For an active girl like Sarah, this was a nightmare.
The thing I recall is that the fistula caused a phenomenally loud pulsing sound. This was Sarah’s party trick. It freaked me out and made me feel ill. Fitz says it kept him awake at night.
Sarah also required an operation on her Thyroid Gland which left her with a ‘smiley face’ – a scar that looks as if her throat has been cut.
During dialysis, Sarah couldn’t eat chocolate, bananas and a whole range of other things – the potassium in one banana would have killed her. The dialysis process runs the blood through a filter to clean out the waste products, but a crucial aspect is also the removal of excess fluid. The machine had to be set to add or remove fluid as required to keep the patient at the right weight. To this end, a strict limit was set on what fluid could be consumed each day (about 1 small water bottle) and this, of all the things to bear, was, by far, the worst for Sarah – she suffered great thirst most of the time and she was only allowed to chew small amounts of ice to get through it. An ice machine is part of the equipment at dialysis centres. Any decision to ignore the limit (which happened many times out of desperation) generally resulted in feeling very sick and having a worse time two days later at the next session.
Fitz and Sarah grew tired of travelling to the dialysis centre, and wanted to move to the beach., They decided to do home dialysis. Fitz, who was an aerobatic pilot in the Roulettes – Australia’s version of the Red Arrows – gave up flying, and found crappy jobs that enabled him to help Sarah.
In order to do home dialysis, their new house required an extra room, modifications to plumbing, electrical, storage and waste disposal and also emergency-user status with service providers. Huge amounts of boxes and packages were delivered to the house every month. Each dialysis session required a lot of set up, pack up and clean up, leaving enormous amounts of rubbish and recycling which rapidly overwhelmed the normal household rubbish and recycling system and required regular visits to the tip. They also had to organise careful storage and disposal of toxic fluids and needles.
Many times during home dialysis Sarah’s arm would ‘tissue’ – thisis a bulging of the blood vessel due to overpressure. ‘Tissuing’ and normal insertion or removal of the needles would frequently require cleaning blood off the walls and ceiling. Fitz says he was often covered in blood.
Meanwhile, the waiting list for deceased donor transplants increased and increased. Three years became four years, and four became five.
Six years after Sarah joined the list, the call finally came.
“She’s too upset to talk,” I remember Fitz saying after I answered the phone in my Glasgow home.
Later, Sarah and Fitz told me that the drive to the hospital was surreal, tumultuous and interminable; emotions battering Sarah from every direction:
Sorrow that someone had just died.
Relief that the wait was over.
Disbelief that the wait was over.
Fear that Sarah was about to undergo a major operation.
Fear that the operation might go wrong.
It turned out that this tsumami of emotions was nothing compared with those she endured after the operation. She felt tired and emotional. She was plagued with worry as she waited to find out if the kidney was comfortable in its new home, or if it was angry and inclined to invade and destroy. She felt guilty that her eldest sister’s transplants had been unsuccessful.
Despite periods of rejection, including one serious one which put Sarah back in hospital, the operation went well and the kidney liked its new home.
While Sarah and Fitz know that the transplant will fail one day – and that Sarah will go back on dialysis – for now they are thriving, along with their beautiful five-year-old daughter, Tia.
Sarah’s oldest sister, Taina, who had suffered three failed deceased donor transplants, has since had a successful transplant from one of the two siblings who did not inherit the disease.
Lisa’s deceased donor transplant is going well.
And Fitz and Sarah never ring me in the middle of the night.