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Living With Dialysis While Waiting For A Kidney - The Newtown Bee PDF Print

Tossing several varieties of herbal tea on his kitchen table, resident Michael Vastarelli made a selection as water boiled in the kettle. His rescue dog, Cookie, gnawed on a toy, trying to get at the peanut butter hidden inside.

But Mr Vastarelli’s attention soon wandered from the steam rising from his mug and Cookie’s wagging tail. He was seeing the past — a time in 2006 when he was 26, and received a diagnosis of Alport syndrome, a form of kidney disease. He was in a relationship, and would soon start a new job. Also around that time was a routine doctor’s appointment, which led to a specialist, his diagnosis, and, eventually, his life with dialysis.

He said, “[During 2006] I was in a relationship that was looking more and more like it was headed towards marriage.” That relationship would end after his diagnosis. That year was also his first year of graduate school. Dialysis did not start until the summer of 2013, he said.

“Most people heading into their 30s are heading into careers or families, and I was thinking about this,” he said.

Skipping ahead to 2015, he wrote in a recent e-mail: “I’m pretty sure there aren’t a whole lot of 30-something professionals trying to balance work/life and dialysis.” Aside from a daily routine that includes his at-home dialysis treatments and management, he is also on an organ donor waiting list through Yale New Haven Hospital.

He described dialysis as a “chronic burden that involves constant doctor checkups, nightly rituals, and makes something as simple as visiting my sister’s house in Durham a huge chore.” While he said he has “been very hesitant to talk about any of this” to date, “very few people have come forth to donate and none of them have been a good match.” Unless he finds a donor sooner, he is looking at a wait of roughly two years on Yale’s list.

But Mr Vastarelli also has reason for inspiration. His stepfather Herb Rosenthal’s friend Kevin Cragin “was in a similar predicament” roughly ten years ago, Mr Vastarelli recalls. He remembered that Mr Cragin was on dialysis. Mr Cragin had placed a notice in The Bee and “It ended up finding its way to one of his acquaintances who turned out to be a perfect match.” He wondered if The Beecould also work for him.

“If anything, it’s very comforting to see someone who’s gone through what I’m going through and safely made it to the other side. That’s really all I want here; to be able to live a normal life like everyone else.”

A brief phone call to Mr Cragin this month confirmed that yes, he had placed an ad in The Bee regarding his condition, for reasons including clarification of what people around town had heard. A friend he grew up with learned of his illness, and this friend turned out to be a perfect match, he said. Today, roughly a decade after his transplant, Mr Cragin said, “It’s true” that pursuing a normal life afterward is possible.

Regarding Mr Vastarelli, Mr Cragin said, “He is young, has his life ahead, relationships, friends — it’s what life is all about.” After finding a transplant, he “can live a normal life.”

Throughout the process, Mr Cragin said, “You need friends, acquaintances to help, and it puts your faith back — everyone wants to help; it’s super.”

 

Michael Vastarelli’s Story

Mr Vastarelli learned from his doctor in 2006, that he was “a little anemic,” he said. Concerned with some “irregular” test results, his doctor had sent him to a specialist.

Soon, small details such as hearing problems and a recent eye procedure proved to be tell-tale signs of a problem, which the specialist recognized. “I’ve always had hearing loss, and never knew why,” he said. And, Mr Vastarelli had eye surgery to correct the results of a condition that left his eyes feeling gritty. “Imagine smoke from a campfire in your eyes when you wake up,” he said.

He had asked his girlfriend to accompany him to his appointment with the specialist. “I was nervous,” he said. Noting the eye problems, the doctor then asked Mr Vastarelli about hearing loss, which he had not mentioned to the doctor. “That’s when I got nervous,” he said.

“A couple of biopsies later,” he learned he had a hereditary condition called Alport syndrome, which according to alportsyndrome.org is an inherited disease of the kidney that can also affect the inner ear (cochlea) and eye. It is caused by genetic mutations that affect a collagen family of proteins. Collagen is a major part of important tissue membranes that are present in all tissues, including the kidney, inner ear, and eye.

Thinking about those initial days, he said, “I did some reading; there are a lot more people with kidney disease than you know and there are no outward symptoms — things you would attribute to something else, but doctors can pick up easily with routine tests.”

Still sipping at his tea while Cookie finished her treat, Mr Vastarelli tried to explain the problems with his kidneys. He said the disease creates scar tissue and the kidneys won’t filter properly. “They leak a lot of protein,” he said.

“When the doctor first described it, he said there was no cure,” and had then told him he had three to five years. “I took that to mean years to live,” Mr Vastarelli said.

“No, no, no,” the doctor told him, then clarified that the kidneys had three to five years. His girlfriend at the time had done some research and Mr Vastarelli remembers asking her, “Is this a death sentence? She said no.”

He then considered his past years spent managing his condition and the dialysis. “You have to be careful about diet, and the list goes on and on,” he said. “There was a specter of death that hung over me.”

Medically speaking, life was “not without drama,” he said.

Mr Vastarelli set his tea aside and skipped again to the story’s beginning: “To go back, the relationship…I was feeling like things [relationship, life, career] were coming together, but that’s when the relationship derailed.” Since then, dating has been “tricky,” he said.

He will “let a person in,” but can also understand that “to some, it’s a bombshell,” most notably to the woman he had been dating at the time, he said.

Describing in technical detail the things going wrong with his kidneys, how dialysis works, and the forms of treatment, he then talked about his particular method of managing his situation. He has a “nightly ritual” with a cycling machine for drawing toxins from his body. To explain how this works, Mr Vastarelli said, “Imagine you poured sugar on a bowl of fruit. The sugar would ‘leech’ water from the fruit through osmosis. Dialysis works the same way. The sugar in the solution draws water out of my body and along with it, toxins. The cycler continually flushes water out of my abdomen so that this ‘osmosis’ happens continuously 24/7.” His particular method of dialysis is “a continuous process so I never feel ‘sick’ from treatments,” he said.

The “cycler” is nice, and takes just a few minutes to set up. He hooks his catheter to it at night, attaches, and the machine does the work of bringing fluids into his body and flushing the toxins out through another tube.

 

The Trouble With Travel

Taking weekend trips to Durham to visit his sister or take a week’s vacation, for example, is “a big deal. I have to lug the cycler with me.”

He mentioned that a friend wanted him to go to Utah for a week, which “would take a lot of planning.” Going to Vermont for a night to go skiing would require permission from his doctor. He would need extra dialysis before and after due to skipping one night. “So, it’s a nuisance. Logistics are tough to deal with.”

Also, arranging to travel and coordinating with the company that provides his dialysis supplies is complicated. “Right now I sort of feel like I’m in a holding pattern, unable to really move until I’m free from dialysis. It’s the same thing with family. I’d really like to go visit my father in Florida — especially after this winter— but coordinating getting supplies there is a huge hassle.”

What is life like with dialysis and the need for a transplant? “It’s always on your mind, you’re always thinking about it.” He said, “What happens when you get to a point when things fail?”

Registering for a transplant is also “not a cure,” he said. “It’s management.” A transplant also has its risks of rejection, infection, and more.

Changes entered his life after the diagnosis.

Psychologically? “Prognosis is good, but you think and wonder if you’ll survive.” He said again that “it’s a specter over your shoulder,” always on his mind with “everything I do, every decision. It’s always a factor.”

Relationships? It has a big effect, he said. “They’re tough.” If he just meets someone, should he tell them about his condition before there is any “emotional investment?” He also can’t “wait too long — it’s delicate.”

He said he hears people now “complain about little things, and I think, ‘I wish those were my problems.’” He believes, too, that he has “adjusted to what’s going on.”

His situations is “a chronic nuisance — it’s never ending.” He has frequent doctor’s visits, and a nurse. “That’s what happens when you’re on life-sustaining therapy, you get a direct line to them.”

Mr Vastarelli’s advice? “Many cases — but not mine — of kidney failure can be avoided with routine checkups.”

Anyone wishing to talk with Mr Vastarelli about the possibility of being tested as a good match for a kidney donor should e-mail him at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

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REDUCE-HTN: REINFORCE study of renal denervation system underway - Healio PDF Print

Boston Scientific has begun enrollment of the REDUCE-HTN: REINFORCE study, which will evaluate the efficacy and safety of renal denervation in patients with hypertension, according to a press release.

The randomized, sham-controlled, multicenter study will assess the Vessix Renal Denervation System in 100 patients.

The system incorporates a multielectrode bipolar catheter intended to reduce procedural variability. The device has an over-the-wire, balloon-based approach and a treatment time of 30 seconds, according to the release.

The primary endpoint is mean reduction in 24-hour ambulatory systolic BP at 8 weeks following randomization. Prior to enrollment, all patients will have a 4-week washout period during which all antihypertensive therapies will be discontinued. The goal of the study design is to reduce the influence of factors that may have influenced the results of a competitive technology trial conducted last year, according to the release.

Michael Weber

Michael Weber

"Previous results of renal denervation studies have been affected by a focus on patients with the difficult-to-define condition of treatment-resistant hypertension, made even more complex by uncertainties regarding their use of hypertension medications," co-principal investigator Michael Weber, MD, professor of medicine at SUNY Downstate College of Medicine in Brooklyn, New York, and Cardiology TodayEditorial Board member, said in the release. "We need to find clarity, and we believe this innovative study design will enable us to do so."

The company anticipates initial results during the first half of 2016. The Vessix system is an investigational device in the U.S., but has received a CE Mark and Australian TGA approval and is available in Australia, Europe, the Middle East, New Zealand and some markets in Asia, according to the release.

Disclosure: Weber reports consulting for Boston Scientific.

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Higher Risk of Cardiac Arrest in Dialysis May Be Genetic - Doctors Lounge PDF Print
Genes may play a role in cardiac arrest risk among kidney patients who are on dialysis, new research suggests. The study was published online April 16 in the Journal of the American Society of Nephrology.

FRIDAY, April 17, 2015 (HealthDay News) -- Genes may play a role in cardiac arrest risk among kidney patients who are on dialysis, new research suggests. The study was published online April 16 in the Journal of the American Society of Nephrology.

The researchers analyzed data from 647,457 dialysis patients, focusing on 5,117 pairs of patients from the same family. Each patient was then matched to an unrelated control patient. Cardiac arrest was the cause of death in both patients in 4.3 percent of the family pairs, compared with 2.6 percent of unrelated pairs of patients.

Compared with unrelated pairs, the risk of dual cardiac arrest was 88 percent higher among genetically-related family members who did not live together, and 66 percent higher among genetically-related family members who did live together. Dialysis patients who were spouses were not at increased risk for cardiac arrest.

"These findings advance the science because they suggest that genetic factors -- or differences in DNA sequence -- contribute to the high risk of sudden death among patients on dialysis," study author Kevin Chan, M.D., from Massachusetts General Hospital in Boston, said in a journal news release. "It paves the way for more detailed genetic studies in the dialysis population to find specific genes that could explain the high risk of cardiac arrest and potentially new treatments for these patients."

Abstract
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Reunion Island voted best emerging tourist destination in India - Forimmediaterelease.net (press release) PDF Print
Reunion Island voted best emerging tourist destination in India (Forimmediaterelease.net) Nominated in the second edition of the South India Travel Awards 2015, Reunion Island won the trophy for best emerging tourist destination from India on Thursday, April 16. This ceremony rewards the work of those involved in the travel and tourism industry worldwide in the Indian market in the sectors of aviation, promoting tourism, hospitality, travel, and technology.

The South India Travel Awards presented some forty trophies, called “Maya," to the winners of the different categories competing for the occasion. This meeting destination received the Black Maya prizes as the best in class for emerging tourist destination in India. This distinction rewards the company's marketing strategy by Reunion Island Tourism (IRT) in the Indian market for two years now.

Like all winners of the South India Travel Awards 2015, Reunion Island was awarded by a jury of leading names in the travel industry in India, in a process of fair and impartial selection. The awards were presented by the Minister of Human Resources Development and the Principal Secretary to the Ministry of Tourism during the official ceremony held at the Novotel Visakhapatnam Varun Beach in Andhra Pradesh in South India.

The South India Travel Awards 2015 in the category of best emerging tourist destination in India, is an excellent communication tool for meeting destination Reunion Island which wants to develop territory arrivals from the Indian market. This new success of Reunion Island in India echoes the participation of ESRD in SATTE fair that was held in New Delhi at the end of January. On site, more than 400 decision-makers, mainly from the press and Indian tour operator networks, visited the Reunion Island stand over the three-day event.

Since August 2014, Indian agencies have been approved to organize stays of less than fifteen days on Reunion Island with Indian travelers being eligible for a visa waiver. This procedure applies to all holders of Indian passports residing in India and any part of the world.

MEDIA CONTACT: Evelyne Coustillat, Reunion Island Tourism, Phone: +262 (0)262 90 83 69, Fax: +262 (0)262 21 00 21, This e-mail address is being protected from spambots. You need JavaScript enabled to view it

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Enzalutamide Improves Quality of Life in Chemo-Naive PCa Patients - Renal and Urology News PDF Print
April 16, 2015 Enzalutamide Improves Quality of Life in Chemo-Naive PCa Patients - Renal and Urology News
Enzalutamide improves health-related quality of life (HRQoL) in chemotherapy-naive metastatic castration-resistant prostate cancer (mCRPC).

In addition to improving overall survival compared with placebo, enzalutamide significantly improves health-related quality of life (HRQoL), pain, and skeletal-related events in asymptomatic or minimally symptomatic, chemotherapy-naive men with metastatic castration-resistant prostate cancer (mCRPC), a recent study published online early in the journal The Lancet Oncology has shown.

In the double-blind, phase III PREVAIL trial, 1,717 men with mCRPC were randomly assigned 1:1 to receive enzalutamide 160mg/day or placebo.

Researchers assessed HRQoL, pain status, the incidence of skeletal-related events, and the time to first skeletal-related event.

Results showed significant treatment differences in change from baseline to week 61 with enzalutamide versus placebo for most FACT-P endpoints and EQ-5D questionnaires, suggesting the HRQoL was improved in patients who received enzalutamide compared with placebo.

Researchers also found that progression of pain at its worst was less common in the enzalutamide group than in the placebo group at week 13, but not at week 25.

The study also showed that 32% and 37% of patients in the enzalutamide and placebo groups, respectively, experienced a skeletal-related event by data cutoff.

Median time to first skeletal-related events was 31.1 months (95% CI: 29.5-NR) in the enzalutamide group and 31.3 (95% CI: 23-9-NR) in the placebo group (HR = 0.72; 95% CI: 0.61-0.84; P < 0.0001).

Source
  1. Loriot Y, Miller K, Sternberg CN, et al. Effect of enzalutamide on health-related quality of life, pain, and skeletal-related events in asymptomatic and minimally symptomatic, chemotherapy-naive patients with metastatic castration-resistant prostate cancer (PREVAIL): results from a randomised, phase 3 trial. Lancet Oncol. 2015. [Epub ahead of print]. doi: 10.1016/S1470-2045(15)70113-0.

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