A Tauranga mother and writer battling the final stages of a rare liver disease has been given the “bombshell” news she will now be assessed for alife-saving transplant.
Dawn Picken, 52, a former television reporter, marathon runner, author, and Bay of Plenty Times Weekend writer and columnist, suffers from an incurable “one-in-a-million” liver condition, Caroli disease, which she was diagnosed with in her 20s.
She was first admitted to Tauranga Hospital in mid-October after showing signs of internal bleeding. She was later discharged but was readmitted on November 8 after her condition worsened.
A scan revealed that a liver lobe had died. She also had a large portal vein clot which was spreading and meant she was deemed not suitable for a liver transplant. Doctors suggested she was approaching the end of her life.
This month, Dawn was transferred to Waipuna Hospice for palliative care where she spoke to the Bay of Plenty Times Weekendabout her battle and the importance of doing the things you want in life and making the most of the time you have.
But just days later, on December 6, she received a surprise visit at the hospice from her liver specialist bringing news that the Auckland liver transplant team had reviewed her scans and wanted to carry out an assessment to see if a transplant was possible.
Dawn then suffered some serious setbacks and was readmitted to hospital.
But now she is set to be transferred to Auckland on Sunday for the week-long transplant evaluation.
“I never expected that,” Dawn said last night from Tauranga Hospital, of the upcoming assessment.
“They had braced me for the opposite.”
Her partner, Stu Ede, said receiving the news was like a “bombshell going off in the room”
Stephen Jennison, a cardiologist and medical facilitator for Dawn, said if the transplant was approved it could save Dawn’s life.
A transplant was not without risks because steroids were used to blunt the immune response to prevent the body from rejecting a new liver but this also increased the risk of infection, he said.
A significant factor was that blood was not flowing into Dawn’s liver through the portal vein due to the clot, so it was circulating via different areas. Surgeons would need to identify these bypass routes and seal them off to prevent bleeds if the transplant went ahead, Jennison said.
If the transplant is approved, it would be a case of waiting for a compatible liver to become available - which could be hours or months.
“She could return to being a reporter, a working mum, and maybe a runner.”
“The potential is really good once you get past the first 24 hours (of the transplant),” Jennison said.
He said he believed the mental strength Dawn had attained through marathon running was helping her through her ordeal, which took another turn a day after she received news of the assessment.
Dawn said her condition began to “spiral down” rapidly.
She experienced an internal bleed and was taken by ambulance to the hospital’s emergency department and then to the surgical theatre where doctors rebanded the clots. She later had another bleed and was operated on again before being stablized and transferred to the hospital’s high dependency unit for further observation and treatment.
“I’m very, very nervous - very worried about the outcomes (of the assessment) and all of that ... to come so far and have them tell me it’s not going to work ... But I’m taking it one day at a time and I’m doing everything I can to make it to the transplant.”
She said she had been overwhelmed by the outpouring of support since she was first admitted to the hospital. Many people had bought her first book, Love, Loss and Lifelines: My year of grief on the run, for which she was grateful. The book, which she launched last month, documents her personal grief journey following the death of her husband, Sean Stanelun, in January 2010, and offers insight for others on how to cope with losing a loved one.
“I just want to say a massive thank you to everyone. So many people are supporting me and sending me their thoughts.
“Some people may feel helpless and I understand that - I’m right there with them.”
She said a conversation with a neighbouring patient in the high-dependency unit had boosted her spirits.
The patient had asked her name and if she wrote columns for the Bay of Plenty Times.
“She told me she read my columns all the time and that she wished the best for me, I was just so grateful to this woman because she was a sliver of light in the dark because HDU is so dark. I lose track of days here because there’s so little light.”
Reflecting on the past few weeks, Dawn said a rare excursion to the beach from the hospice hours before she got news of the upcoming assessment had been another “wonderful” highlight.
She dipped her toes in the ocean and felt the sand beneath her feet.
It was an overcast day on Mount Maunganui’s main beach but even the “clouds were beautiful”.