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Help Linda Get the Lifesaving Medical Care She Needs

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Linda Fenn is a resident of Westport, New Zealand. She suffers with a rare, congenital kidney disease called Medullary Sponge Kidney (MSK). Linda joined our Facebook support group about four months ago. She has talked repeatedly about not being able to get any care related to MSK at all in New Zealand. For the first 20 years of her diagnosis, she was treated fairly well, but then something happened. A well known and high profile nurse at Buller Hospital passed judgement on her and labeled her as a drug seeker. From there, Linda says that her medical records were falsified, and now no doctor will treat her symptoms or stone episodes. She says she has proof of all of this. She claims that her doctor refuses to even weigh her, something that is standard protocol at almost every visit here in the United States. Her health started to deteriorate within 4 months of treatment being stopped.

I didn’t realize the impact of her statement regarding her weight until she posted some pictures of herself. To say I came completely undone is an understatement. She has gone from a vibrant woman to a literal skeleton, and I am absolutely livid that a human being is being treated this way! The pictures above were taken just 5 years apart. I am told she has lost even more weight than the second picture reveals. It was taken in September 2014. This goes well beyond inhumane; it is barbaric. This is 2016, not the Stone Ages, and nobody should be made to live in the agony that Linda endures when the technology is available to help her. She has had 3 different HDC appointed advocates that have been unable to get her treatment reinstated because Buller Hospital blocks everything the advocates try to do on her behalf.

Linda says, "They stopped my treatment because they didn't believe it worked. My argument is if that was the case, I wouldn't have deteriorated. After 4 long years of constant meetings & appointments, I am now so frail I've deteriorated to being bed-ridden 85-90%. I've inhumanely suffered for four years now & I'm desperate."

I would be too if I were in her position. Anyone would be.

Linda has been on a regimen of Diazepam and Lorazepam - anxiety medications. She, like the majority of MSK patients has hundreds of stones and crystals in each kidney, and we continuously either pass stones or have stones stuck that need emergency intervention. That is the nature of the disease and there is no way to stop it. You can only attempt to slow the disease down and it is a lifelong struggle. Neither of those medications will even touch the pain of trying to pass one stone, much less multiple stones and the other symptoms that go along with the process; including elevated blood pressure, urinating blood, severe abdominal and flank pain, fever, vomiting, and endless infections in some. We've had several members develop life threatening cases of Sepsis more than once. Some even have declining kidney function, including myself. 

In closing, Linda needs help, and she needs it right now. I have serious concerns that if something doesn’t change drastically and in a positive way for her immediately, she may not survive the rest of this year with the course she is currently on. There is only so much pain and suffering a human body can take before it completely gives out. Linda's body is very close to that point.That is evident in her pictures.

We respectfully ask you, Honorable Minister, to help expedite this process and get Linda the medical care she needs before it is too late.

Thank you,

Mary Maston

MSK Advocate

 



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