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Author Topic: what if D unit is shut down-hurricane?  (Read 6720 times)
texasstyle
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« on: August 25, 2011, 07:33:40 AM »

Hi everyone. I know I am not the only one who is going to effected by Hurricane Irene here, but naturally I have big concerns about getting my husband to dialysis. he will have D on Fridays, and the storm is to mostly come Sunday. What the heck happens if the unit can't open on Monday? Or we can't there because roads are impassable from wires, trees, flooding, etc..? I would like to hear how things went from other people who faced natural disasters.
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iketchum
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« Reply #1 on: August 25, 2011, 07:38:28 AM »

Your dialysis center is supposed to have emergency procedure packages to give you, telling what to do in case of such emergencies.
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Meinuk
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« Reply #2 on: August 25, 2011, 11:20:25 AM »

Texas, I am assuming that you are in Texas, so here is some info for you.

Here is your network They have disaster information posted: http://www.esrdnetwork.org/disaster-planning/index.asp

If you are not in Texas, you can find your network here and go to their emergency information page:  http://www.esrdncc.org/

Texas has some GREAT Hurricane links:  http://www.esrdnetwork.org/disaster-planning/patients/hurricane-planning.asp

I've attached a general Hurricane Red Cross checklist pdf

Here is the NKF Disaster Pamphlet:  http://www.kidney.org/atoz/pdf/DisasterBrochure.pdf

and here is a link to Medicare's Preparing for emergencies: a guide for people on dialysis:  http://www.ipro.org/index/cms-filesystem-action/esrd/preparing_for_emergencies.pdf

Here is Emergency Meal Planning from the NKF:  http://www.kidney.org/atoz/content/emergencymeal.cfm
« Last Edit: August 25, 2011, 11:24:48 AM by Meinuk » Logged

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52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #3 on: August 25, 2011, 11:26:38 AM »

Ha ha ha ha ha!

Texas is in PA!

 :rofl; :rofl; :rofl;
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Meinuk
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« Reply #4 on: August 25, 2011, 12:39:15 PM »

Ha ha ha ha ha!

Texas is in PA!

 :rofl; :rofl; :rofl;

Well, in that case, you are out of luck.  You can't do anything. I guess I'll just stop posting info then.

Bust seriously, Look up PA on the network list and see what they have for information.

(BTW - Texas has some good info too)

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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #5 on: August 25, 2011, 01:02:05 PM »

I have always made the same assumption about Texastyle.     Meinuk's information is perfect for all dialysis patients.  Call your center.  I know some members are getting a treatment on Friday who would normally go on Saturday.  Around here (and, no, I am not in Paris),  ice in the winter can be a big problem.  Any emergencies that would close the center will follow the centers own emergency policy. 

Last hurricane, we lost power for a week.  The center went on auxillary power, once the roads were passible.  Give your center a quick call. 

I have our supplies, gas in the car, gas in the grill. Now just hanging out, waiting to see what Irene is going to.
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texasstyle
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« Reply #6 on: August 25, 2011, 02:27:44 PM »

I am cracking up right now about the TS in PA LOL. OK, so it was probably a very dumb idea  and not well thought out but.....when I had to think of a username when was registering for the forum, i simply looked over and the name came to me from a CD that was right next to me. I thought, oh-that's sounds good. Plus, my sister lives in Texas, and I love Texas Blues. It seemed like a perfect fit lol. I guess I'm changing to PA style. Doesn't sound as good though. I was not trying to fool anyone or anything like that. Anyway, thanks for the links. I am going to read them during the time I am spending on the computer right now. I am quite nervous. My backyard LITERALLY is the DELAWARE RIVER. In April, when the snows melted & there was a full moon, & a heavy rain storm, the river went over and we got 3 foot of water. Long time neighbors said that hadn't happened since the 70's.I rescued a girl from her car and made it into the paper as "good Samaritan" lol. During heavy rain it floods a little bit, but recedes very quickly. It comes up through the grates of park's parking lot I border and am surrounded by. I live in a condo unit.  8 people lost their cars in the April floods, and one of our cars got 4 inches of water. So.... I am scared they might be rescuing us by boat this time lol lol.  Now, off to read the links. EVERYONE: PLEASE KEEP YOURSELVES AND YOUR FAMILY SAFE IF YOU ARE IN THE PATH OF IRENE.Write down on PAPER all the numbers from your cell phones. You'reland line may be working when the cell towers are not. TS. Oops... I mean PS. Wait! PS? That sounds like I'm "adding" something to what I'm saying. lol
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Meinuk
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« Reply #7 on: August 25, 2011, 02:52:50 PM »

No worries Texas, my username is a hold out from the years when I was living in London and my e-mail account was/is Me in UK I haven't lived in London full time since 1999.

If you are that close to the river, you should check with your local OEM (Office of Emergency Management) County or Town Level, and register with them as having Special Medical Needs.  (this goes for EVERYONE on dialysis who may be in an evacuation scenario). Right now, everyone is in emergency mode.  Put yourself on the map if you will need extra help to evacuate.

Speak with you dialysis facility and ask them who their backup facility is.  Refill your husbands meds, have a current copy of his Dialysis Treatment Orders, and it would be great to have the most recent copy of his bloodwork to show that his infectious disease status.

But at this point, you may just have to wing it.  don;t panic.  Paris gave some good advice.  Remember the emergency diet guidelines, and breathe.  Do you have someplace that you can pre-evacuate to?  Relatives with a facility near them?  These are things to think about.

If it is a true disaster, many dialysis facilities will be running extra shifts to get as many people dialyzed as possible.  Talk to your facility.  If you can't contact you facility, call your network.
« Last Edit: August 25, 2011, 02:58:07 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
HILINE
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« Reply #8 on: August 25, 2011, 03:05:29 PM »

my center is in MD 10 miles from the Ocean, everyone will start 1.5 hours early and run for 3 hours     :thumb up;






Edited:Fixed smiley error- paris, Moderator
« Last Edit: August 25, 2011, 05:55:26 PM by paris » Logged
paris
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« Reply #9 on: August 25, 2011, 06:02:01 PM »

And I thought Meinuk was an Eskimo name when I first read it!! Then I met her and she explained her username!!    There is an old thread that asks why you chose your username.  I may have to bump that up!!    :bump;   LOL   

Irene is messing with the whole east coast and it is scary.  I didn't really take the warnings very serious until Fran veered as it made landfall and came directly over Raleigh.  It shut our city down for weeks. You forget that everything works on power -- ATM's, gas stations, ever thing that fills our days.  When our house had power after a week, my husbands first question was "when will the cable be back on?"     :rofl;   

T.S -- did you call the center and what did they say?  Keep us updated.  We'll be worrying about you.
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« Reply #10 on: August 26, 2011, 03:50:23 AM »

Hang on everyone!  Best of luck.  Keeps us posted if you can.

                ???   
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HILINE
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« Reply #11 on: August 26, 2011, 07:25:00 AM »

my center is in MD 10 miles from the Ocean, everyone will start 1.5 hours early and run for 3 hours     :thumb up;

the coastal towns are being evacuated.. we got a package authorizing  us to drive and get dialysis at another center if necessary. we had a nurse and 7 techs today,
Everything went smooth. I was impressed :2thumbsup;




Edited:Fixed smiley error- paris, Moderator
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jeannea
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« Reply #12 on: August 26, 2011, 10:36:06 AM »

I got a call from my nurse this morning. I'm in PA but inland and not near any waterways. They're calling all the PD patients to be sure they know what to do if the power goes out. I'll just do manuals in the immediate time and if the power goes out for a long time I'll go to my sister's house. She has a big generator since her daughter is on a ventilator.
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« Reply #13 on: August 26, 2011, 12:59:47 PM »

No worries Texas, my username is a hold out from the years when I was living in London and my e-mail account was/is Me in UK I haven't lived in London full time since 1999.
Okay, VERY off topic, but thank goodness for that!  I've ALWAYS read your username as Me in UK and thought it couldn't really be that because you're not in the UK.  Phew, I'm glad that's cleared up and I can continue saying your username as I have been.

 ;D

And back to topic - gosh, I hope everybody is okay.  One of my (American) friends lives in New York (she's in the B Zone, if that means anything to anyone?) and has questioned whether it's all an overreaction, but I'm guessing that even if it is, it's far better to be prepared that take a chance. 

Stay safe, everybody!
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« Reply #14 on: August 26, 2011, 01:59:40 PM »

My husband's unit gave everyone emergency packets today in case I have to take him to ER because he needs to be dialyzed. There has been talk that they may not be able to open Monday, we'll wait and see.

I'm hoping with fingers and toes crossed that this storm isn't as bad as predicted. I'm in CT and the last forecast I saw (this morning) shows it coming directly over our area. Our daughter is here with her 2 little boys (did I forget to mention she had her 2nd one and he's 10 days old? He's a twin of her when she was born) and we've been picking things up trying to put them in the shed so we don't lose them. I will stay up however late to get everything done, just in case. I'd rather be over prepared and nothing happen, than blow it off and we get whammed.

Everybody stay safe this weekend, let's hope it's not as bad as they've been saying....
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« Reply #15 on: August 26, 2011, 04:21:09 PM »

I'm a NxStage user, so I can just load my machine into the car with supplies and I'd be ok.  I created a "go-pack" consisting of 3 day's worth of dialysate and treatment supplies that I had ready to go in case we needed to bug out.  Fortunately (at least for us), the storm is going to miss South Carolina. 

Everybody be careful and stay safe this weekend!
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« Reply #16 on: August 26, 2011, 06:10:58 PM »

I think this is a situation when it is necessary to prepare for the centers to be closed on Monday and Tuesday. This means that starting NOW you need to start an emergency diet. NO SALT. Strictly limit Potassium. Take your binders with any food containing phosphorus.

The strategy to keep in mind is that you are trying to bridge a disruption in your schedule and from what I am reading power is going to be an issue for millions of people and thus thousands of people who are using dialysis. Waiting to see if the unit is open Monday or Tuesday will mean it will be too late if it is closed. And I have always said that the ER is not an appropriate back up plan. Yes if you're medical condition requires the ER then use the ER but to have that as the unit's backup plan is a disgrace.

Here is the official emergency diet ingrediant list - which Meinuk forever dubbed the fluffernutter strategy. The key is sodium and potassium. Do not eat salt. If you can control fluid intake you can bridge five days without treatment so long as you also limit potassium.

Canned food is not a good choice. Anything with a shelf life is loaded with salt. I would advise any dialyzor in the path of Irene and/or an area that could be effected by power outages in the even larger areas adjacent to Irene's path to switch to an emergency diet NOW and hope it was unnecessary when the units open Monday, but if the units are closed come Monday you will have needed to start NOW!
« Last Edit: August 26, 2011, 06:15:35 PM by Bill Peckham » Logged

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HILINE
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« Reply #17 on: August 27, 2011, 03:00:46 AM »

looks like the forecast has unimproved for the DELMARVA peninsula, lots  of rain, not as windy :2thumbsup; :2thumbsup;
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Meinuk
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« Reply #18 on: August 27, 2011, 08:48:49 AM »

Emergency Diet Guidelines
Fluid
•   Fluids need to be restricted further.  A total of 2 cups a day for three days should prevent symptoms of shortness of breath and fluid buildup.
•   Drink only 4oz of fluid with meals (total 1.5 fluid), this leaves ½ cup to take with medications
•   Incorporate phosphate binders into fluid allowance
•   Chew gum for thirst
•   Limit fresh fruit and vegetables, purchase canned fruit and vegetables ahead of time. Drain extra fluid from canned products. Always purchase low sodium versions and light or no-sugar added products if you have diabetes.
Sodium
•   Avoid table salt and salt substitutes
•   Flavor your foods with herbed seasoning, garlic powder, and lemon juice
•   Remember lower sodium jarred products, read labels and choose products that say low sodium
Potassium
•   Avoid fruits and vegetables high in potassium.
•   Keep a list of high potassium food on your refrigerator
•   Avoid high potassium fruits, such as, apricots, bananas, Dates, Honeydew melon, Kiwifruit, Nectarine, Orange, orange juice, Prune juice, Prunes, Raisins.
•   Avoid high potassium vegetables-Artichokes, avocado, fresh beets, brussel sprouts, Chard Greens-Beet, Collard, Mustard, Okra, Parsnips, Potatoes, Pumpkin, Rutabagas, Spinach, Sweet Potatoes, Tomatoes and Tomato sauce, Winter Squash and yams.
•   Miscellaneous foods to avoid-Bran, Dried beans and peas, nuts, Potato chips, salt substitute, soy milk and nuts, Yogurt.

Tip:   purchase light or no-sugar added fruit such as pineapple, pears, mixed fruit (drain extra fluid from can) Always purchase low-sodium variety of canned vegetables, choose from string beans, corn, carrots, peas, and cauliflower.
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #19 on: August 28, 2011, 03:39:18 AM »

IRENE has left our area :sir ken; it's still windy, the answering machine works at the dialysis center so we may have dialysis in the morning . :yahoo;
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jeannea
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« Reply #20 on: August 28, 2011, 07:28:18 AM »

I didn't even lose power. But I had hours of tornado warnings and I was afraid to be hooked up to my dialysis machine if things got really bad. So I'll have to do some manuals today and get back on track tonight.
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texasstyle
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« Reply #21 on: August 29, 2011, 04:58:24 AM »

we able to make it to D this morning. Phone lines are down, but was able to navigate to the center. Much flooding and expected to worsen through tomorrow as everything is dumping into the river from everywhere also. We were extra cautious with the diet and I made sure of it because my husband isn't the greatest at sticking to it, but I knew the importance of it this time. Here is a little video I made about 10 minutes or so after the river went over. It eventually rose to several feet high. Sorry for the poor quality. It is a dumpster floating by my porch. At one point to the left of the screen you will see 2 blue port a john's (my back yard is the park lol) Just a couple feet beyond them is the river.  http://www.youtube.com/watch?v=2Xq8HbY_M04   Anyway, hope everyone survived through the hurricane and is SAFE.
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texasstyle
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« Reply #22 on: August 29, 2011, 05:00:33 AM »

oh, and as you can guess, those cars never made it. The water got up to my chest.
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« Reply #23 on: August 29, 2011, 12:12:48 PM »

Glad you're safe. Sorry the river was coming after you. Nasty hurricane.
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