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Author Topic: Puerto Rico Goes Dark – it must be scary times for local dialysis patients  (Read 4356 times)
iolaire
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« on: September 21, 2017, 05:42:40 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Simon Dog
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« Reply #1 on: September 21, 2017, 08:02:56 AM »

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):

Quote
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
« Last Edit: September 21, 2017, 10:17:49 AM by Simon Dog » Logged
iolaire
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« Reply #2 on: September 21, 2017, 10:16:00 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #3 on: September 21, 2017, 11:37:32 AM »

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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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
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« Reply #4 on: September 21, 2017, 12:01:02 PM »

The 2016 Network 3 report is interesting 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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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
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NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Simon Dog
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« Reply #5 on: September 21, 2017, 12:46:35 PM »

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.
Quote
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.
« Last Edit: September 21, 2017, 12:47:50 PM by Simon Dog » Logged
iolaire
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« Reply #6 on: September 26, 2017, 11:59:04 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #7 on: September 26, 2017, 12:02:56 PM »

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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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
iolaire
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« Reply #8 on: September 26, 2017, 12:06:33 PM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #9 on: September 26, 2017, 12:19:09 PM »

Good they are already flying patients to SC for treatment:
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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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
iolaire
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« Reply #10 on: September 26, 2017, 12:41:29 PM »

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.
« Last Edit: September 26, 2017, 12:43:20 PM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #11 on: September 29, 2017, 06:46:00 PM »

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

“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.”
« Last Edit: September 29, 2017, 06:50:51 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Simon Dog
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« Reply #12 on: September 30, 2017, 08:33:40 AM »

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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Tío Riñon
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« Reply #13 on: September 30, 2017, 08:45:43 AM »

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) 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

¡Viva Boricua!
« Last Edit: September 30, 2017, 08:52:08 AM by Tío Riñon » Logged
Tío Riñon
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« Reply #14 on: September 30, 2017, 09:06:43 AM »

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/) 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
« Last Edit: September 30, 2017, 09:23:48 AM by Tío Riñon » Logged
Michael Murphy
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« Reply #15 on: September 30, 2017, 01:50:19 PM »

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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Rerun
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« Reply #16 on: September 30, 2017, 03:25:57 PM »

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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Bill Peckham
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« Reply #17 on: September 30, 2017, 04:07:05 PM »

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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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Rerun
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« Reply #18 on: October 01, 2017, 08:38:57 AM »

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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Bill Peckham
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« Reply #19 on: October 01, 2017, 10:42:16 PM »

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/

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?
« Last Edit: October 01, 2017, 11:00:20 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
iolaire
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« Reply #20 on: October 02, 2017, 06:56:47 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #21 on: October 02, 2017, 07:07:18 AM »

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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« Reply #22 on: October 02, 2017, 07:57:06 PM »

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/


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.”
« Last Edit: October 02, 2017, 08:10:02 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #23 on: October 03, 2017, 04:27:17 AM »

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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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #24 on: October 03, 2017, 11:06:32 AM »

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.   ??? 
« Last Edit: October 03, 2017, 11:12:18 AM by Rerun » Logged

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