Her breathlessness meant she could not climb the one flight of stairs to her office at work and she struggled with daily activities.
“I couldn’t even make my bed.”
In November, after many tests, scans and doctor and hospital visits, she found some answers.
Clendon was told she likely had amyloidosis – an incurable condition that occurs when an abnormal protein, called amyloid, builds up in the organs and affects their function.
In Clendon’s case, it was believed the amyloid build-up was affecting her heart.
Clendon said she was awaiting confirmation, including whether she had AL (Amyloid Light Chain) amyloidosis or ATTR (Transthyretin Amyloidosis) amyloidosis.
Meanwhile, “I feel like I’m stuck in the mud.
“I’ll be completely honest, come November when I got those results, even before then, I felt like the Christmas just gone would be my last.”
Clendon said heart medication meant she no longer experienced the same level of breathlessness. She still required a lot of rest but could manage tasks such as cleaning the house.
She did voluntary work at her church and was looking for paid work, “but it’s got to be the right one in terms of can my body hack it”.
She lives with her son and daughter and said she had other family support.
Clendon traced her heart issues back to when she suffered a cardiac arrest in 2010 and “dropped dead basically”.
She spent several weeks recovering in Rotorua Hospital.
Clendon wanted to raise awareness about amyloidosis.
“If you are short of breath or if you are feeling like your heart’s going to pound out of your chest, go to the doctor.”
Dr Rodger Tiedemann says different classes of drugs are used to treat the two types of amyloidosis. Photo / Jason Oxenham
Auckland City Hospital haematologist and University of Auckland associate professor of medicine Dr Rodger Tiedemann said AL and ATTR amyloidosis were the two most common types of amyloidosis seen in western countries out of “30-plus” types.
Tiedemann said AL amyloidosis was caused by a “pre-cancer clone” of plasma cells in the bone marrow.
“They make this protein that gets secreted into the blood that isn’t properly folded or has propensity to misfold, and it deposits out in tissues in a misfolded state … ”
He said amyloid protein disrupted tissue function, often the heart, kidneys, nerves, and gut.
ATTR amyloidosis involved a different protein – the TTR protein – misfolding and was produced by the liver, he said.
Tiedemann said different classes of drugs were used to treat the two conditions.
He said amyloid deposition in the tissue was “very difficult” to remove, and most treatments were aimed at preventing progression.
“For patients who present late with heart failure or liver failure, it can be very serious.”
Some patients could see “reversals” of their heart failure following treatment, but for many it “either doesn’t happen or it happens very slowly”, he said.
Rotorua AL amyloidosis patient makes ‘comeback’
Rotorua woman Tove Jensen-Munroe was diagnosed with AL amyloidosis and myeloma (blood cancer) in 2017.
Her AL amyloidosis diagnosis meant her heart could “harden” and fail due to the amyloid build-up.
Between chemotherapy and the drug bortezomib, her heart recovered.
Jensen-Munroe relapsed in 2023 and was told the unfunded, $220,000-a-year drug daratumumab was her “best option”.
Unable to afford that, she had a stem cell transplant in 2024, which helped improve her heart function.
Rotorua woman Tove Jensen-Munroe was diagnosed with AL amyloidosis and myeloma in January 2017. Photo / Megan Wilson
Last week, Jensen-Munroe said she was doing “fantastic” and had continued improving in the past year.
She worked part-time at her private massage practice, cycled 60km on the weekends, walked her dog twice daily, and swam weekly.
“I live a full life … I’ve really come back.”
Jensen-Munroe, who facilitates a growing national support group for AL amyloidosis, encouraged those diagnosed to “have some faith” in publicly funded treatments, but did not discount going overseas to access daratumumab if they had the option.
Pharmac’s advice and assessment director, Dr David Hughes, said the agency had four funding applications for daratumumab on its options for investment list, including for AL amyloidosis.
“They are medicines we want to fund if we have the budget available.”
Pharmac could not say if or when a funding decision would be made, as it depended on available budget, negotiations with suppliers, and the prioritisation of other medicines, Hughes said.
He said Pharmac was in regular contact with the supplier, Janssen, about its daratumumab funding applications.
Meanwhile, Clendon said she had been researching amyloidosis, which could be overwhelming and emotional.
She learned Jensen-Munroe had AL amyloidosis and subsequently connected with her.
“I know that there’s no cure for this disease, but it is manageable, and that’s evident through … people like Tove, who is living a fulfilled life now.”
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and the Rotorua Daily Post. She has been a journalist since 2021.