While 29-year-old Alport Syndrome patient Kevin waited for a kidney donor, he conducted peritoneal dialysis at home every day.
Hurricane Sandy or “Superstorm Sandy” was unquestionably one of the most shocking and unexpected emergencies of my adult life. Over the course of a week, Sandy, a tropical wave originating in the western Caribbean Sea, quickly strengthened to a tropical storm and eventually, at its peak, a Category-3 hurricane. I used a match to light my gas stove to prepare hot water for simple meals or a quick cup of tea. Four days after the storm (and still without power) my block was finally made clear for travel. Power returned for me on the fifth day but the return to normalcy still took time as many roads and businesses were still closed due to damage and power outages.
Have the number of your doctor, dialysis clinic, hospital, and other medical offices saved on paper and displayed in a prominent location within your home. Keep important pills and a list of all your necessary medications on you or in your vehicle at all times, in case you are stranded from home.
This entry was posted in Blog, Dialysis, Kidneys, Patient Perspectives on January 30, 2016 by Jalaire B.
The Alport Syndrome Foundation is a 501(c)(3) non-profit organization dedicated to improving the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and funding research. It took firefighters six days to gain control of a wildfire that burned more than 70,600 acres in Southern California’s Mojave National Preserve, located about 150 miles northeast of Los Angeles and 40 miles west of the Nevada border. On June 6, lightning struck a home in Reggio, La., destroying the interior and collapsing the roof. On June 26, a 15-year-old high school track star from Roselle, Ill., was killed when lightning hit a tree at a family cookout. As a homeowner, you can take preventive measures, says Bud VanSickle, executive director of the Lightning Protection Institute (LPI), a nonprofit group based in St. Make sure materials and methods comply with nationally recognized safety standards of the LPI, National Fire Protection Association and Underwriters Laboratories Inc. Only an experienced and reputable UL-listed, LPI-certified lightning protection contractor should install your system. When in doubt, contact your local Better Business Bureau to obtain reliability report information on a company or contractor before you hire.
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Severe thunderstorms produce damaging winds, destructive hail, deadly lightning and very heavy rain. In her spare time, Julie can be found exploring Southern Utah on foot and by four wheel drive, or spending time with her family. Question: What’s the quickest way to convince a community that it needs to invest in resilience to climate change? Answer: Show them exactly what would happen if a monster storm dropped a foot of rain on them.

Murdock and the project team are using historical precipitation data collected by NOAA’s Nexrad radar service near Milwaukee to create a grid that estimates the amount of rainfall that fell every 15 minutes during the 2008 storm. According to Potter, storm transposition accounts for the fact that communities don’t typically use continuous modelling to make their infrastructure decisions because it can be both expensive and impractical.
Potter and Murdock also hope storm transposition can also be used to test whether a county’s current development ordinances are adequate to address the possibility of climate change-fueled storms.
For patients with renal diseases like Alport Syndrome and other conditions requiring special needs, natural disasters and other unexpected events can be especially traumatic. But during 2012’s Hurricane Sandy, Kevin faced an unimaginable reality when he lost power for close to a week and vowed to adequately prepare for the future. After being diagnosed with renal failure due to Alport Syndrome in July 2012, I immediately began hemodialysis at my local hospital and subsequently underwent additional surgery allowing me to perform peritoneal dialysis nightly at home.
It made landfall on the eastern seaboard causing massive destruction in excess of $70 billion (yes, billion!).
As I was not performing dialysis, I had to be mindful of my water intake and what exactly I was eating. En route to the hospital, Target was the first store we saw with power and miraculously, they had Wi-Fi.
I realized I had not been prepared for this crisis whatsoever and determined to be better prepared for the next emergency. Greg Cleveland of the Southern California Incident Management Team called “the largest fire on record within the 1.6-million-acre preserve,” according to the Los Angeles Times. Fire Administration estimates that lightning causes 17,400 fires each year, with an average of 10 deaths, 75 injuries and $138 million in property damage. A qualified specialist should provide a list of references and affiliations with industry groups.
Doppler radar indicated a thunderstorm producing heavy rain entering the southwest section of Zion National Park. This storm is expected to produce flash flooding across a large extent of the park. For your protection, move to an interior room on the lowest floor of your home or business. The data can be used as a source of rainfall amounts for use in a hydrologic model that computes stream flows in a watershed. The 2008 storm data can easily be converted into an animated radar graphic, color-coded to represent the intensity of the rainfall over each part of the watershed.
I had just finished training with the home dialysis machine, no longer requiring nurse assistance, when Sandy struck in late October 2012. I had the equipment at home to perform manual exchanges (filling and draining my abdomen via my abdominal catheter) but once the temperature in my home dropped to the mid-50’s, the dextrose solution used to regulate wastes and fluids in my body was no longer usable (unless of course you had a way to heat the bags, which I did not). I used my cell phone (charged via USB in my car, still lacking service) and their network to reach the dialysis unit. If you are injured, a paramedic or anyone who finds your iPhone can access the information from the emergency dial screen, even without unlocking the device.
Thousands of acres of dry grass, juniper, sagebrush and pinon—bushy and overgrown after last winter’s record rainfall—were quickly engulfed as strong winds fanned flames.

We are now at peak season: Two-thirds of these disasters occur between June and August (25 percent in July alone). A qualified lightning protection contractor can provide options for service entrance arresters and point-of-use surge protection devices. This storm was located over Zion National Park, or 18 miles north of Colorado City and moving Northeast at 25 mph. Engineers can then apply the data to flood-plain mapping they may already have done, and use it to identify possible weaknesses. In the absence of regulation, developers could theoretically do nothing to account for flooding, leaving their projects and communities ill-prepared to withstand a major storm event. Prior to the storm, I was informed by my power company that due to my at-home life-support dialysis machine I would be top on their list when it came to restoring power. Ultimately, I decided on canned tuna, oatmeal, Pop Tarts, dry cereal, cranberry juice and water as my go-to items. Massive snow storms, flooding, tornadoes, other weather phenomena and even acts of terrorism could put any Alport Syndrome patient in a very undesirable, unexpected situation. Because the area is remote, only five homes, six trailers, two cabins and a few other buildings were destroyed, but families were forced to evacuate.
Most lightning strikes occur outdoors, igniting brush, grass and other materials; 41 percent hit homes and interior structures, zapping roofs, sidewalls, framing and electrical wires with up to 100 million volts of electricity. The second bolt set a house ablaze, causing $100,000 in damage to its second story and attic.
Julie is excited to be back in the news business after spending several years in the software industry.
That’s three hours after what should have been 40 hours of dialysis over the past four nights! Julie believes strongly in the role of responsible news media in society, especially at the local level. These pills helped removed phosphorous from my body, which was essential as my kidneys (and now dialysis equipment) could not.
The quick session alleviated the kidney pains I was experiencing and overall I felt fatigued but OK.
In fact, a 2003 Insurance Research Council survey revealed that 25 percent of homeowner claims cite lightning or hail as the cause of their losses.
I violently shivered each day as it was absolutely freezing in my home and anemia from my failing kidneys only made things worse. Even those unfamiliar with Superstorm Sandy likely have seen the now infamous image of the Jet Star roller coaster in Seaside Heights, New Jersey, separated from the boardwalk amusement park, eerily laying desolate in the Atlantic Ocean. I was told to be extremely vigilant with my diet moving forward until my body received ample treatment time again.

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