When you’re told your baby daughter, who hasn’t yet had her first birthday, has a rare liver disease and will one day need a liver transplant, your whole world changes. After months of illness and testing, just before her birthday, Bek was finally diagnosed with Primary Sclerosing Cholangitis, PSC.
Her 15 years have seen her develop many complications and other diagnosis and spend a lot of time at the RCH, both as an outpatient and inpatient. But no inpatient stay was so dramatic and challenging than the one I would like to share with you today.
The emergency room staff were a little puzzled, normally I was on the ball with information and involved in planning of what was needed, but not on this night. I was a scrambled mess. You see earlier that day I had found my mother unconscious, and after having gotten to her hospital and discussing that she did not want to be resuscitated nor placed on any means of artificial life support, we sat with her knowing she would likely not make it through the night. Then a call from Bek – she’d had another bleed, a common complication of her end stage liver disease where her body made extra, but very weak blood vessels that would rupture and see her losing up to 400mls of blood at a time. I said good bye to my mum and took Bek into hospital. Mum passed away at 8am the next morning.
The doctors and nurses were great. As they looked after Bek, they looked after me too. Although willing to try to stabilise her enough so I could get her home, it soon became apparent that the complications were now to a point that going home without a transplanted liver was not an option. But as sick as Bek was I needed to plan and attend a funeral. Bek’s care needs were high and complex and, being a nurse myself, I was always able to continue a lot of Bek’s home care whilst she was in hospital. But this time was different, and the staff decided to allocate Bek her own nurse to allow me to leave her in the hospital to do what I needed to do. I was very grateful and I think too it gave the nursing and medical staff a better and deeper understanding of just how much care was needed, even at home, to keep Bek as stable and comfortable as possible.
The weeks rolled on and with them so did the complications, but I still recall that phone call in the middle of the night, we have a liver for Bek. The surgery was slow but went well. Recovery was not without complication, spending long enough in ICU for me to become familiar enough to be mistaken as a member of staff.
The planning of coming home brought excitement, but also stress when protocols and procedures stepped on family centred care and forgot to acknowledge the skills I had been using for years would easily transfer to taking home a newly transplanted patient. But they were overcome in the end with the help of known and caring nurses.
With thanks to the miracle of transplant surgery and a precious gift of life given in someone else’s grief, Bek is now doing well with only the occasional admission needed for some of her other medical issues, and she enjoys her dancing and singing and generally just being a teenager – things that she had not been able to do for many years before her transplant.
To register as an organ donor or for more information about the Australian Organ Donor Register, visit Donate Life or Zaidee’s Rainbow Foundation.