I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: iolaire on September 21, 2017, 05:42:40 AM
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Today’s articles on the lack of power (and damage) in Puerto Rico made me think of the dialysis patients. They are saying it will take a long time for power to be restored. I doubt generator backup would last more than a few days. Unlike the continental US people in need cannot be driven a few hundred miles to another city for treatment. Most of the other Caribbean islands already have damage so short flights to other islands are not likely and option. I really wonder what will be done for the patients (all US Citizens as PR is a U.S. territory).
https://www.nytimes.com/2017/09/20/us/hurricane-maria-puerto-rico-power.html?partner=rss&emc=rss&_r=0
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Normally, the expense of getting patients to alternate facilities is a good investment since the future treatments will more than cover the cost. PR calls that into question since they are talking months without power.
Generator power can last virtually forever. I am aware of the contingency plan at some server farms that include diesel generators and a tanker refilling schedule that keeps them perpetually filled in the event of an outage. Industrial generators can typically run for months with only routine maintenance, particularly diesel. The issue then becomes getting the dialysis supplies and diesel to the clinics - something that should be possible given the priority that will be given medical facilities.
If I lived in PR I would have a personal generator (I do on the mainland), and my biggest problem would be finding people to do guard duty shifts with a 12 gauge or AR15 to keep it from being stolen. Being the only house on the street with the lights on would be a dead give away.
An interesting excerpt from 105CMR145 (Code of Massachusetts Regulations):
145.291: Emergency Electrical Service
(A) An emergency source of electrical power shall be provided on the premises of the dialysis
facility.
emergency electrical service shall be as follows: an emergency electrical
generating set, including prime mover and generator, equipped with an automatic transfer
switch, which will transfer within ten seconds, and shall be reserved exclusively for supplying
the emergency electrical system. The generator set(s) shall have sufficient capacity and proper
rating to meet the maximum expected demand of the Essential Electrical System at any one time.
... loads of other details, see it at http://www.mass.gov/eohhs/docs/dph/regs/105cmr145.pdf
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Generator power can last virtually forever. I am aware of he contingency plan at some server farms that include diesel generators and a tanker refilling schedule that keeps them perpetually filled in the event of an outage. Industrial generators can typically run for months with only routine maintenance, particularly diesel. The issue then becomes getting the dialysis supplies and diesel to the clinics - something that should be possible given the priority that will be given medical facilities.
Yes I'm a bit worried that things we take for granted like running trucks, working fuel depots, working roads and the like are not going to be readily available. Lots of our backup plans still rely on Just In Time deliveries which is asking a lot as basic infrastructure collapses...
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https://reliefweb.int/report/puerto-rico-united-states-america/major-flooding-puerto-rico-hurricane-maria-barrels-over
"Puerto Rico is currently caring for about 120 dialysis patients from other parts of the Caribbean that are currently being housed in hotels. Direct Relief is in contact with physicians caring for many of those patients and working on a needs list for insulin and other required medications."
PR has 44 dialysis units ... thousands of people need to be evacuated ... but to where?
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The 2016 Network 3 report is interesting http://www.qirn3.org/Files/Annual-Reports/2016_Network_Annual_Report-Network-3-Final_Formatt.aspx (http://www.qirn3.org/Files/Annual-Reports/2016_Network_Annual_Report-Network-3-Final_Formatt.aspx) this story on page 17 indicates all dialysis units have backup power:
"On Wednesday September 21, 2016, a fire at a power plant in Puerto Rico left an estimated 1.5 million people without electricity. According to media outlets, the fire began at the Central Aguirre Power Authority in Salinas at 2:30 p.m. EST; no injuries were reported. Once the Network became aware of the incident, staff proceeded to activate members of the Puerto Rico Emergency Preparedness and Response Activities Renal (PREPARAR) Coalition to assess the level of impact. The fire and power outage affected towns throughout the island and impacted all 45 dialysis facilities: 27 owned by Fresenius Kidney Care, 15 owned by Atlantis Healthcare Group; 3 independent centers: 1 in Naranjito, 1 university renal center (in San Juan), and 1 pediatric renal center (San Juan). Network 3 confirmed that all dialysis facilities were operational using generators."
Even with power, water is also out, plus disruption to staff. Are any units operating?
Over all, in 2016, there were 5,924 dialyzors on the island. Hopefully many (most) evacuated. Interesting that Network 3 is New Jersey plus PR and USVI What area could absorb a thousand dialyzors let alone 6,000? There is hardly any surge capacity in the system anywhere
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Yes I'm a bit worried that things we take for granted like running trucks, working fuel depots, working roads and the like are not going to be readily available. Lots of our backup plans still rely on Just In Time deliveries which is asking a lot as basic infrastructure collapses...
True, but you can rest assured that the important people (you know, the ones who tell people not to hoard fuel during hurricanes) will always have access to an ample supply. We can only hope that dialysis patients are treated with a priority similar to senior level political figures when it comes to fuel and supply delivery.
Interesting that Network 3 is New Jersey plus PR and USVI
I can think of few things more discouraging than being evacuated to NJ during a crisis.
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Good they are already flying patients to SC for treatment:
http://www.thestate.com/news/local/article175186806.html
CMS is waving requirements to allow people to get treatment
https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2017-Press-releases-items/2017-09-21.html
Main priority for power is hospitals and dialysis centers, as of Monday the 25th one hospital had power
Power has reportedly been restored to the HIMA San Pablo Hospital in Bayamon, near San Juan.
http://aldianews.com/articles/politics/electric-service-puerto-rico-take-4-months-be-restored-after-maria/50023
This story provided most of the links above:
http://www.fiercehealthcare.com/population-health/hurricane-maria-puerto-rico-medical-services-natural-disaster-harvey-irma
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http://www.cnn.com/2017/09/26/politics/san-juan-mayor-puerto-rico-cnntv/ (http://www.cnn.com/2017/09/26/politics/san-juan-mayor-puerto-rico-cnntv/)
"We are finding dialysis patients that have not been able to contact their providers. We are having to transport them in near-death conditions. ..." she said [San Juan Mayor Carmen Yulín Cruz].
If this is true in San Juan then what is the story going to be from more rural areas of the island?
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Shoot that doesn't sound good. If they don't know where people are how will they evacuate them? I do worry the most about rural folks (and centers).
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Good they are already flying patients to SC for treatment:
http://www.thestate.com/news/local/article175186806.html (http://www.thestate.com/news/local/article175186806.html)
"The South Carolina Forestry Commission’s Incident Management Team, which is helping manage the operation" ... the Forestry Commision?
I wonder how this works ... I assume dialyzors have their food/shelter paid, plus their care partner? And/or family?
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Elderly and ailing residents of San Lorenzo have no way of accessing medical treatment. On Saturday, three people helped a man on dialysis cross the river in a float fashioned out of a car tire. Once on the other side, his son placed him on the back of a horse and trotted to a hospital, said San Lorenzo resident Antonio Ojeda, who works in the mayor’s office.
https://www.washingtonpost.com/national/there-was-once-a-bridge-here-a-devastated-puerto-rico-community-deals-with-isolation-after-maria/2017/09/26/772c3a62-a2ca-11e7-ade1-76d061d56efa_story.html?utm_term=.16c87638000e
FEMA is there but:
At one point the team members waited outside a school for about an hour because they had lost contact with the mayor, and they struggled to transmit information to the command center by satellite radio. Most of them did not speak Spanish, and none knew their way around the area — at one point they had difficulty locating an address because they couldn’t find it on Google maps.
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Oh no I wonder what they are hearing ??? thousands of dialyzors have not been evacuated, are they all (mostly) facing crisis?
https://democrats-waysandmeans.house.gov/media-center/press-releases/neal-statement-growing-medical-emergency-puerto-rico (https://democrats-waysandmeans.house.gov/media-center/press-releases/neal-statement-growing-medical-emergency-puerto-rico)
“I am deeply concerned about reports from Puerto Rico that millions of people, including thousands of dialysis patients, are not receiving the urgent medical care they depend on. In this day and age, no American should ever die of a manageable medical condition. Yet this appears to be the situation facing kidney disease patients in Puerto Rico. Those in need of dialysis are in dire condition due to Puerto Rico’s lack of needed fuel and supplies to dialyze those with kidney disease. More than a week after Hurricane Maria hit Puerto Rico, needed medical supplies and fuel have not been delivered, resulting in the death of kidney patients; these deaths were preventable and the failure to get needed help to the island is inexcusable. The Administration and Congress must act immediately to get urgently needed fuel and supplies to Puerto Rico. HHS and FEMA must act with immediacy. If the needed supplies and fuel cannot be brought to the island in a timely manner, the Administration must work to evacuate patients in the most critical condition.”
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I read an interesting report from someone down there. Gas lines are 11 hours long, and special people (Police, Fire, MDs) get front of line privileges. There have been arrests of unspecial people in line who attacked those with front of line access. No word on if dialysis patients with their own machine and generators got special access. If I was down there and had access to fuel, I would be rationing the amount and frequency of my NxStage treatments to prolong the life of my inventory.
Word is that things are expected to get worse as people run out of supplies and turn to post-apocalyptic behavior engaging in both violent and non-violent bogarting of resources. Generators and fuel reportedly are at risk of disappearing if left unattended at night.
It's also a cash only economy now.
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Despite Trump's assertion that Puerto Rico's leadership isn't working to help themselves, I see on Mayor Carmen Yulín Cruz's twitter account (https://twitter.com/CarmenYulinCruz (https://twitter.com/CarmenYulinCruz)) that she has posted pictures of her actively working to collaborate with leaders, complimenting responders, and comforting her citizens. Additionally, she is trying to get the word out to dialysis patients as to which facilities are available for treatment:
https://twitter.com/fortalezapr/status/913879386809622528 (https://twitter.com/fortalezapr/status/913879386809622528)
¡Viva Boricua!
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If you are looking to help provide funds to our peers in Puerto Rico (as well as others affected by the hurricanes), you can do so through the American Kidney Fund. They state that they are sending money directly to those impacted. Here's an infographic (http://www.kidneyfund.org/financial-assistance/information-for-patients/disaster-relief/ (http://www.kidneyfund.org/financial-assistance/information-for-patients/disaster-relief/)) demonstrating how the funds are distributed.
Visit their site for more information: http://www.kidneyfund.org/kidney-today/a-growing-crisis-in-puerto-rico-for-dialysis-patients.html (http://www.kidneyfund.org/kidney-today/a-growing-crisis-in-puerto-rico-for-dialysis-patients.html)
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The solution to this mess is to dispatch a couple of Navy amphibious ships from the US with a couple of Marine heavy chopper squadrons equipped with Sea Dragon choppers or Osprey’s each can carry tons of supplies or up to 50 people. Each Navy amphib comes wit a 60 bed hospital expandable to 600 beds. Heavy equipment operated by army or navy or marine engineering units could help open roads. Military doctors and medics could be used to help with the care of the citizens needing help. This mess is making the Bush handle line of Katrina look good.
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They need to line up some cruise ships and evacuate the island. 3.5 million on the mainland. Glad we didn't accept all those refugees. We have our own to house and feed. 2 can come to my house. More if needed. I have floor space. God Help Them!
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They don't need to move they need power and communications. Ordinarily utility trucks from neighboring states swarm into affected areas, since that is not an option in this case what is suppose to happen? Without help from neighboring states there is no way Texas or Florida could have recovered as fast.
Our military can set up a city, in a desert, in a day ... they can get power and communications up if they are given the authority to. What's the hold up?
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The hold up, it appears, are the roads that are impassable. There is one road that goes around the island. The roads inward were at best, one lane and very crooked. "Villages" were hard to get to before Maria.
The planes and ships bringing supplies need to leave with people to the mainland. We need to embrace our people from Puerto Rico and let them stay here until their island is ready for them to return to.
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http://thehill.com/policy/healthcare/353174-thousands-with-kidney-disease-at-risk-in-puerto-rico (http://thehill.com/policy/healthcare/353174-thousands-with-kidney-disease-at-risk-in-puerto-rico)
https://www.aol.com/article/weather/2017/10/01/maria-power-outage-puts-old-vulnerable-at-risk-in-puerto-rico/23228771/ (https://www.aol.com/article/weather/2017/10/01/maria-power-outage-puts-old-vulnerable-at-risk-in-puerto-rico/23228771/)
I'm looking at these articles and I'm not seeing any quotes from FMC ... they provide almost all the dialysis on the island why aren't they giving an accounting of what is going on? Why is the American Kidney Fund the spokes-organization for the for profit dialysis units on the island?
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Why is the American Kidney Fund the spokes-organization for the for profit dialysis units on the island?
Liability?
Also wonder about coordination between Medicare and FEMA. Medicare (and FMC) should know exactly where most of the at risk people live, are either of them coordinating with emergency crews to get them where they need to be?
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They need to line up some cruise ships and evacuate the island. 3.5 million on the mainland. Glad we didn't accept all those refugees. We have our own to house and feed. 2 can come to my house. More if needed. I have floor space. God Help Them!
Bless you Rerun, you are such a good sport and you are also very sweet-natured !
I do keep my fingers crossed for Puerto Rico and I continue to hope that help is being provided early enough for all residents.
Best wishes from Kristina. :grouphug;
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This is what needs to happen in Puerto Rico - they started getting ready to deploy for Irma three days after it tore through the USVI (check out the link for photos and info) they have not been reported to have been deployed to Puerto Rico.
http://www.af.mil/News/Article-Display/Article/1331101/air-force-provides-aeromedical-evacuation-to-dialysis-patients-trapped-by-hurri/ (http://www.af.mil/News/Article-Display/Article/1331101/air-force-provides-aeromedical-evacuation-to-dialysis-patients-trapped-by-hurri/)
Air Force provides aeromedical evacuation to dialysis patients trapped by hurricanes
By Peter Holstein, Air Force Surgeon General Public Affairs / Published October 02, 2017
FALLS CHURCH, Va. (AFNS) -- The hurricanes that battered dozens of islands in the Caribbean and the southeast U.S. in the last month left millions without power, food, safe drinking water and with no way to contact the outside world. The situation is devastating for everyone in the area, but for people undergoing dialysis, it is especially dangerous. Air Force medical assets provided aeromedical evacuation to more than 100 patients at dialysis clinics damaged or left without power from the storms.
Dialysis is a process to filter the blood of people with decreased kidney function. It removes excess waste products like potassium or sodium, and maintains blood pressure. Patients with decreased kidney function require regular access to dialysis machines, which are bulky and require electricity. The recent storms made it impossible for dialysis clinics to operate at normal capacity, leaving patients at high risk of worsening kidney condition, which can lead to death.
“Dialysis patients can’t get treatment if there’s no power, and that can become a life threatening emergency,” said Jerry Dowdy, deputy branch chief for aeromedical plans and operations at Air Mobility Command, Scott Air Force Base, Illinois. “With the total destruction of so much infrastructure, the best way to treat those patients was to get them stateside.”
To ensure it is safe to move these patients via aeromedical evacuation, the 375th Medical Group’s En Route Patient Staging System deployed to the island of St. Croix, U.S. Virgin Islands.
“The ERPSS allows us to provide some initial care on the ground and ensures patients are medically cleared by the attending flight surgeon for air travel,” said Dowdy. “Patients need to meet certain requirements before they can get on the airplane. We had a Critical Care Air Transport Team on each flight to treat patients with critical medical requirements during air transport back to the U.S.”
Each ERPSS is equipped with sufficient medical supplies and generators allowing operations in locations with limited infrastructure. ERPSS can either deploy to a “building of opportunity” or freestanding tents. Rather than hospital beds as seen in some facilities, patients are on litters to expedite their movement onto the aircraft for evacuation.
Dowdy said this hurricane season is unique in his 30-year Air Force career.
“Three storms in a row is tough, we’ve never had to respond to a crisis quite like this before,” said Dowdy. “We’ve had teams work around the clock for nearly a month to be able to bring people back from the disaster area so they can get the care they need.”
The scope of the humanitarian disaster from Hurricanes Harvey, Irma and Maria required cooperation. Dowdy emphasized the relief efforts are a joint operation between the active duty, Reserve, Guard, other Defense Department entities and other federal partners.
“Colonel Tami Rougeau, the director of Patient Staging, spearheaded the communication and medical requirements between the DoD, Health and Human Services and the Federal Emergency Management Agency,” said Dowdy. “We have Air Force units from many different installations working with FEMA, other DoD personnel, local officials, non-governmental organizations and other agencies. In my life, I’ve never seen anything like these three storms all hitting one after another.”
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Many thanks Bill Peckham for this update, it is very kind of you to provide us with it and very much appreciated
and the great help of the Air Force is very, very impressive !
Best wishes from Kristina. :grouphug;
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Yea for them! Scott Air Force Base saved me once when I was down in a plane in 1986. Long story and it is here somewhere. But they let Boise know there was a plane down in Idaho.... and blah blah blah
:clap;
This makes me sad to think about how many of us are reliant on medication and machines to live. That dork in North Korea knows this. All his people are either healthy and strong and fit or.... dead. ???
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As always good people and the government are trying to help - thank you - but its hard:
http://www.npr.org/2017/10/05/555796327/following-disaster-teams-in-puerto-rico
No power, no air conditioning, no local water, no local food, no Internet and very limited communication. Hurricane Maria falls somewhere between Hurricane Harvey in Houston — where teams stayed in a hotel — and the 2010 Haiti earthquake, where they created a field hospital in Port-au-Prince and slept outside.
And they face lack of communication and the resulting bad information as "information" makes its way between people.
Back on the fourth floor, a distraught woman appears with a shocking story: the hospital an hour away in the city of Aguadilla, she says, has shut down, kicked out the patients, and it smells like decomposing bodies.
...
The team roars up to the Good Samaritan Hospital of Aguadilla. Two heavily armed federal agents enter first, then comes the DMAT expecting the worst.
They walk down a corridor past bewildered nurses and are ushered into a quiet, orderly office. There is nervous laughter.
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The experience is a good example of what happens after a traumatic weather event, when there's no communication — rumors fly, and people worry about their hospitals.
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A sad story on CNN: http://www.cnn.com/2017/10/22/us/zakaria-bargain-puerto-rico-cnntv/index.html
The dialysis part starts just after 1:00. Three dialysis patients died because an evac chopper never arrived.
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Dios Mio I have to think that the number includes hundreds if not thousands of people who relied on dialysis.
Mortality in Puerto Rico after Hurricane Maria (https://www.nejm.org/doi/full/10.1056/NEJMsa1803972?)
Abstract
BACKGROUND
Quantifying the effect of natural disasters on society is critical for recovery of public health services and infrastructure. The death toll can be difficult to assess in the aftermath of a major disaster. In September 2017, Hurricane Maria caused massive infrastructural damage to Puerto Rico, but its effect on mortality remains contentious. The official death count is 64.
METHODS
Using a representative, stratified sample, we surveyed 3299 randomly chosen households across Puerto Rico to produce an independent estimate of all-cause mortality after the hurricane. Respondents were asked about displacement, infrastructure loss, and causes of death. We calculated excess deaths by comparing our estimated post-hurricane mortality rate with official rates for the same period in 2016.
RESULTS
From the survey data, we estimated a mortality rate of 14.3 deaths (95% confidence interval [CI], 9.8 to 18.9) per 1000 persons from September 20 through December 31, 2017. This rate yielded a total of 4645 excess deaths during this period (95% CI, 793 to 8498), equivalent to a 62% increase in the mortality rate as compared with the same period in 2016. However, this number is likely to be an underestimate because of survivor bias. The mortality rate remained high through the end of December 2017, and one third of the deaths were attributed to delayed or interrupted health care. Hurricane-related migration was substantial.
CONCLUSIONS
This household-based survey suggests that the number of excess deaths related to Hurricane Maria in Puerto Rico is more than 70 times the official estimate. (Funded by the Harvard T.H. Chan School of Public Health and others.)
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https://www.wsj.com/articles/puerto-rico-data-suggests-hurricane-maria-death-toll-is-much-higher-1528928688
Information released on causes of death shows notable jumps after August 2017 of conditions such as heart disease, diabetes and septicemia, a blood infection caused by bacteria. The data doesn’t address whether such conditions were connected to Hurricane Maria. But after the storm, many people on the island had trouble getting medication or receiving medical attention.
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What a nightmare. I can only imagine and I don't like what I see.
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These Americans are the wrong color.
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And speak the wrong language.