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Stories from the dialysis comunity across the globe.



Renal patient plea for dialysis out bush - ABC Local PDF Print

Eileen Kemarre Bonney, 65, is an Alyawarre woman who has been an Aboriginal health worker for most of her life.

In the late 1970s, she was one of the first employees of the Urapuntja Health Service, working out of a bough shelter at Ammaroo Station, 350 kilometres north-east of Alice Springs.

"Everyday at work, I'd check the patients, go around and drop medicine off and I would talk to the doctor on the two-way radio," she said.

"I liked to be a health worker, helping our people, I think it was important for me to look after family."

Eileen went on to work in Aboriginal health at her nearby community of Ampilatwatja, but had to quit a few years ago because of her renal disease.

"I was getting weak and sick, the doctors told me that I'd have to move to town for dialysis," she said.

"My family felt sad when I left, they were worried about me...I miss my family, my children."

Some years ago, $10 million of federal money was earmarked for renal services in central Australia.

But the funds remained in limbo with the Northern Territory government saying it could not afford the associated costs to maintain the services.

In February, Chief Minister Adam Giles said he had spoken to Federal minister Nigel Scullion about the money.

"I had a chat with Minister Scullion about this ... about that $10 million in particular," he said.

"He said he's offered up the $10 million in that area and how can we support that. I've committed to Nigel that we will go have a look and see how we can advance that further."

Since that time no announcements have been made.

Meanwhile, Ms Bonney continues to have dialysis treatment three times a week, and lives at a hostel in Alice Springs with other Aboriginal renal patients from communities all over central Australia.

She said she gets lonely at times but that the other renal patients have become 'like a family'.

More than anything though, she misses her husband, her children, her grandchildren and her great-grandchildren.

"We need dialysis out in these communities and I'd like to see my family," she said.

"It's very hard for my kids staying without me in that community, they'd like me to go back there."

(Eileen Bonney is the current Chair of the Ampilatwatja Health Centre Aboriginal Corporation)

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Life after renal failure - Mmegi Online PDF Print

When the doctor broke the news that my diagnosis indicated chronic kidney failure, I thought he was playing a crude, cruel joke and would surely say the remedial words: “Just kidding”.

However, I soon realised that he was not joking at all.  Chronic kidney failure? My troubles started towards the end of last year when I began experiencing one difficulty after another. At first, I found that I was always exhausted for days on end, but just assumed this was because of the Gantsi heat.  Then my feet started swelling so badly that I could not wear closed shoes and had to settle for sandals.  The issues did not stop there.  Very soon I began to suffer from shortness of breath and could barely walk five metres without stopping to catch a breath.

I have since lost count of the number of times I visited the hospital during that period.  I was a regular at Gantsi Primary Hospital, and every time the doctors told me something different.  For instance I was once told that all the signs represented the symptoms of a dilated heart and another time, I was told they were the complications of diabetes, which I have lived with for 15 years. To make matters worse, I began to experience high blood pressure, which became ever more troubling with each visit to the hospital.  I was either given new medication or my dosages were increased, but nothing helped.

On December 29, when the rest of the world was preparing to welcome 2015, I visited the hospital after falling sick again. My blood pressure was found to be high and the doctor admitted me on the spot. All the time when I was in hospital, my blood pressure did not go down and a fresh new symptom appeared: I started vomiting and was unable to eat anything at all. Eventually the doctor conducted blood tests to check my kidneys and my worst nightmare began.

The results came and I was told that I had renal failure. Immediately, millions of thoughts raced through my mind. How long do I have on the Earth? How am I going to die, painfully or not? What about my children?  It never occurred to me that I could possibly regain full control of my kidneys or that dialysis could help me. The doctor immediately booked me to see the nephrologists at Princess Marina Hospital in Gaborone and stressed that I should not waste time.  The look on his face said it all. The condition was far more serious than I thought.  When I got to Marina more blood work was conducted and when I presented the results to the nephrologist, he looked at me and said: “You have to start dialysis immediately”.

Now what is this man saying? First I am told I have renal failure now I am being told that I have to start dialysis immediately.  Dialysis is a process for removing waste and excess water from the blood.  It is used primarily as an artificial replacement for lost kidney function in cases of kidney failure. To me, that was the double blow. I did not want to hear or even understand what the doctor was saying. I went home and did not dare break the news to anyone. Instead, I wallowed in self-pity. Many questions floated into my mind and honestly I did not have the answers. I did not cry at all that night, although I tossed and turned. What do I tell my children?  I had no idea of how to break the news.

In the morning when I awoke, my eyes were swollen from lack of sleep and misery was written on my face. It took all my strength to face the reality of informing my children about my condition. They somehow took it well and gave me the support I badly needed.  I was admitted to Marina for doctors to put me on dialysis. I found myself seated in a lounge waiting to be called for counselling and while there I met three men who were on dialysis too. This trio kept on talking about how bad ‘peritoneal dialysis’ was and how they intend to sue the government for forcing them to do it instead of ‘haemodialysis’. All of these were strange medical terms to me, but the way the men carried on completely changed my mind about my planned procedure.

For the record, haemodialysis uses a man-made membrane to filter wastes and remove extra fluid from the blood. Peritoneal dialysis uses the lining of the abdominal cavity and a solution to remove wastes and extra fluid from the body. Debates continue about the advantages and disadvantages of both.

Anyway, when I was eventually called in for counselling, I told the nurse in no uncertain terms that I would not be doing any dialysis. She kept questioning me on the cause of my change of heart, but I was evasive and would not divulge anything. 

However, I finally relented and told her about the lounge conversation. The nurse advised me not to listen to what people say but rather do what’s best for me. Her words encouraged me and I agreed to the procedure. I was told a catheter or silicon tube would be inserted into my abdomen, to enable the dialysis. “So you are going to open my abdomen,” I asked the doctor and he simply replied: “Yes”. The procedure was done at the Minor Theatre and the two doctors who performed it were so much at ease and obviously skilful, giving me confidence in their abilities.

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Treatment of Methicillin-resistant Staphylococcus Aureus - Medscape PDF Print

Treatment of Methicillin-resistant Staphylococcus Aureus
Medscape
Natasha E. Holmes, MBBS, FRACP, PhD, Steven Y. C. Tong, MBBS, FRACP, PhD, Joshua S. Davis, MBBS, FRACP, PhD, Sebastiaan J. van Hal, MBChB, FRACP, FRCPA, PhD. Disclosures. Semin Respir Crit Care Med. 2015;36(1):17-30. Print. Abstract and ...

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Peloton Therapeutics Inc. Presents Promising Data on First Inhibitor of HIF-2? ... - PharmaLive (press release) (subscription) PDF Print

DALLAS & PHILADELPHIA–(BUSINESS WIRE)–Peloton Therapeutics Inc., a drug discovery and development company focused on advancing first-in-class, small molecule cancer therapies targeting unexploited molecular vulnerabilities, presented preclinical data on its lead investigational candidate, PT2385, at the American Association for Cancer Research Annual Meeting in Philadelphia, PA. PT2385 is the first clinical stage antagonist of hypoxia inducible factor-2? (HIF-2?), a transcription factor implicated in the development and progression of renal cancer.

“HIF-2? can act as a tumorigenic driver in cancer. As a transcription factor, HIF-2? has historically been seen by the scientific community as impossible to directly target,” said Eli Wallace, Ph.D., Vice President of Chemistry for Peloton. “Our preclinical evidence indicates that PT2385 is potent, selective, and readily absorbed. We believe this program has the potential to become a significant therapy for renal cancer.”

PT2385 is currently being investigated in a Phase 1 clinical trial for the treatment of advanced or metastatic clear cell renal cell carcinoma (ccRCC). Loss of the von Hippel-Lindau tumor suppressor (VHL) is the key oncogenic event in up to 95% of patients with ccRCC. With the loss of the VHL protein (pVHL), the transcription factor HIF-2? accumulates and drives the unbalanced expression of numerous gene products. Preclinical data indicate that orally bioavailable PT2385 disrupts HIF-2? activity in ccRCC and thereby blocks the expression of multiple tumorigenic factors responsible for unrestrained cancer cell growth and proliferation, tumor angiogenesis, and suppression of anti-tumor immune responses characteristic of ccRCC.

“Loss of VHL, and resulting activation of HIF-2?, is the signature driving event in clear cell renal cell carcinoma but HIF-2? had been largely dismissed as ‘undruggable,’ which is one reason the potential of PT2385 is so exciting,” remarked William G. Kaelin, Jr., M.D., Professor in the Department of Medicine at the Dana-Farber Cancer Institute, Harvard Medical School, a scientific advisor to Peloton, and a noted expert on VHL and hypoxia inducible factors. “PT2385 is the first molecule to advance to the clinic that binds directly and specifically to HIF-2? and potently inhibits its transcriptional activity.”

About Renal Cell Cancer

The American Cancer Society estimates that more than 61,000 new cases of kidney cancer will be diagnosed and about 14,000 people will die from this disease this year. The National Cancer Institute reports that the prognosis for any treated renal cell cancer patient with progressing, recurring, or relapsing disease is poor, regardless of cell type or stage.

About Peloton

Peloton Therapeutics is a drug discovery and development company focused on advancing first-in-class small molecule therapies for cancer and other life-threatening diseases. Initial efforts are focused on hypoxia inducible factor-2? (HIF-2?), which has been implicated in the development and progression of several types of cancers. Peloton’s lead candidate, PT2385, is the first HIF-2? inhibitor to enter clinical development and is being evaluated in a Phase 1 clinical trial for the treatment of advanced or metastatic clear cell renal cell carcinoma (ccRCC). Peloton is headquartered in Dallas, TX and was founded in 2011 by Professor Steven McKnight and The Column Group. The company raised more than $30 million in a Series C financing in October 2014 to fund its development activities for PT2385 as well as advance its research pipeline. Peloton is backed by The Column Group, Remeditex Ventures, Tichenor Ventures, Topspin Fund, Nextech Invest, and other investors. For more information, please visit www.pelotontherapeutics.com.

Source: Business Wire Health

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Cassidy, Gillibrand Improve Access to Care for Huntington's Disease Patients - PoliticalNews.me (press release) PDF Print

Cassidy, Gillibrand Improve Access to Care for Huntington's Disease Patients
PoliticalNews.me (press release)
... lacks access to consistent medical care. Congress has previously waived the two-year waiting period for people disabled by Lou Gehrig's disease (ALS) and End Stage Renal Disease (ESRD). This legislation would waive that wait period for those with HD.

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