Help Linda Fenn get to Australia For Life Saving Treatment!!

Help Linda Fenn get to Australia For Life Saving Treatment!!

Where she can get the treatment she desperately needs (treatment that she is denied here in New Zealand!)

It's been five years since doctors took away the only drug that eases the pain of Linda Fenn's life-threatening kidney disease.

In that time Linda has gone from "managing" to being bedridden.

Aged just 50, she needs a new hip, lost her shoulder, her independence, and her faith in the health system.

This month, her weight dropped to 33kg. Now, she's terrified she's going to die.

Linda is a mother of three and has been locked in a bitter battle with authorities at the West Coast District Health Board over access to pain medication for more than 10 years.

Their inability to deal with her condition has led to her current extreme ill-health - and forced her out of her home and into respite care.

Born with medullary sponge kidney and nephrocalcinosis (descriptions at bottom). Linda frequently passes kidney stones which cause her acute pain.

Mostly, she manages at home with anti-anxiety medication and paracetamol, but if a stone is too large or painful, she goes to Buller Hospital for help. If a stone is stuck, she will be transferred to Greymouth by car.

While a stone is passing, Linda can become extremely dehydrated because she can't hold down fluid. She can lose up to 2kg at once.

Previously, Linda was able to "get around". But the continued lack of access to pethidine - the strong opiate is the only thing that helps her - has sent her body into meltdown.

"Anyone who's ever had a kidney stone will tell you it's the cruellest pain you'll experience. It's indescribable, the stones travelling down the tubes,"

"For those of us with my disease, our tubes are skinnier, so it takes even longer to pass a stone."

The constant stress on her body from the pain from both her kidneys and her eroded hip (unable to be fixed until she puts on weight) is what's caused her to become so skinny.

Documents seen by the Herald detail how doctors first became concerned about Linda's use of pethidine in 2008. They were worried she was being affected by the drug - which can cause neurotoxicity - and wanted to limit her use.

Linda strongly disagrees, as other opiates such as morphine made her nauseous or unwell. The doctors never tested for neurotoxicity, and therefore were acting on speculation alone.

Linda's arguments led to accusations of "drug seeking", which made her extremely upset.

In an attempt to right the situation, the health board arranged for Fenn to see a pain specialist. He found no evidence of a pethidine addiction.

However, doctors in Buller remained "uncomfortable" with prescribing the drug. They said it didn't appear to help Linda's pain at all. Amid ongoing tensions, pethidine was removed from Buller Hospital in 2012.

Desperate, Linda complained to the Health and Disability Commissioner.

While it found errors on the health board's part - not writing or following pain management plans, and negative attitudes towards Linda - it said the doctor's decisions not to administer a "potentially toxic" dose of pethidine was clinically appropriate.

In a bid to finalise a pain management plan for Linda, the health board sent her to see a pain specialist in Nelson in 2014.

That doctor, Buzz Burrell, proposed she be allowed a small amount of pethidine at home for acute attacks.

When Burrell's plan was not followed, Linda's HDC advocate spoke to him on the phone, and recorded it on Linda's file: "He can see Linda is in pain. Cannot understand why other specialists can't see Linda is genuine in her need for medication."

Burrell would not speak about Linda's case to the Herald, saying it was inappropriate to discuss a patient.

The West Coast District Health Board also declined to discuss Linda's case, despite a privacy waiver. Its general manager, Philip Wheble, first said the board "prefers to discuss a patient's care with the patient themselves rather than through the media".

It then said it was inappropriate to discuss Linda's case while a HDC investigation was ongoing. HDC would not respond to questions about its investigation.

West Coast MP Damien O'Connor - who has been in contact with Linda several times over the past 18 months - said her situation was "incredibly complex".

"In spite of efforts from multiple individuals and organisations it doesn't seem to have resolved the situation," he said.

His office had been involved in getting Linda access to treatment in Christchurch, but it was difficult to do much more, he said.

He was reluctant to comment on whether doctors were making the right call.

"I'm no medical professional. In the end it's up to those professionals to make the best ethical and effective treatment judgments for her. We and many others have done our very best to ensure doors open for her to get the best possible advice."

An MSK PATIENT in Australia has offered to get Linda into her doctor. He is educated on MSK & most importantly, hes up on all the research about how her kidneys are sucking the calcium from her teeth & bones. Linda's friend has kindly offered to have her stay with her & her family. Its the only chance she has of surviving now after receiving the disgraceful response from The Minister of Health.

Linda is a good person and deserves help!! So please, even $1 can give some hope in getting towards our goal of sending Linda to Australia to get life saving treatment.

What are medullary sponge kidney (MSK) and nephrocalcinosis?

• MSK is a birth defect where the kidney develops cysts, keeping urine from flowing freely through the tubes

• Nephrocalcinosis is a disorder in which there is too much calcium deposited in the kidneys

• A complication of this is frequent kidney stones

• Scientists have not discovered a way to reverse or prevent medullary sponge kidney

• Treatment focuses on pain management and prevention of infections.

Thank you for taking the time to read and thank you if you are able to donate its very very much appreciated.