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Author Topic: If your dialysis unit MIGHT be closed due to Irene start the emergency diet NOW  (Read 3061 times)
Bill Peckham
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« on: August 26, 2011, 07:59:15 PM »

Cross posted from DSEN

If you think your dialysis unit MIGHT be closed due to Irene start the emergency diet NOW


By Bill Peckham

I am dismayed that dialyzors in the path of Irene have not been directed to use their emergency diet over this weekend.

It is being widely reported that power outages should be expected and that some outages will be prolonged. When exactly are the renal networks and dialysis providers planning to direct thier patients to strictly limit fluid and potassium? On Monday after they arrive at their unit to find the power is out?

Right now you need to start following an emergency diet if you think there is a chance your dialysis unit will be closed Monday or Tuesday.
« Last Edit: August 27, 2011, 10:21:39 AM 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
kporter85db
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« Reply #1 on: August 26, 2011, 10:37:17 PM »

Good advice :thumbup;
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May/2010 Sulfa based antibiotics killed my already weakened kidneys, almost
Feb/2011 PD catheter placed
July/2011 Started Peritoneal Dialysis
Nov/2013 Started NxStage 5 days/week

Ken
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« Reply #2 on: August 27, 2011, 08:49:09 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
Bill Peckham
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« Reply #3 on: August 27, 2011, 09:38:59 AM »

I can't seem to find a working link to Medicare's publication "Preparing for Emergencies: A Guide for People on Dialysis."

Have they pulled it? It was always sub optimal but at least it was something.


EDITED TO ADD I see Meinuk linked to it on ipro's website (PDF) glad to see it there but CMS/DHS needs to update this 12 year old brochure and ditch the fluffernutter strategy in favor of coast guard approved rations.
« Last Edit: August 27, 2011, 09:49:17 AM 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
Meinuk
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« Reply #4 on: August 27, 2011, 09:50:44 AM »

English PDF attached
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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
Meinuk
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« Reply #5 on: August 27, 2011, 09:54:05 AM »

Spanish guide is too large to post.

Here is a link:

http://www.esrdncc.org/index/cms-filesystem-action/nepop/emergencias.pdf
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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
Bill Peckham
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« Reply #6 on: August 27, 2011, 10:05:32 AM »

English PDF attached

Excellent.
In this situation there needs to be a single message that all stakeholders repeat. I'm not hearing reports that that's the message people are getting, from posts here, or elsewhere in the dialysispere. Page 5 and 6 should be the go to, top line message:

>>--<<

Helpful Tips in an Emergency

1.   Stay at home unless you are hurt, as long as it is safe to do so. Instructions for dialysis patients may be available on TV, radio, or by phone or messenger. Depending on the nature of the emergency, you might want to call your dialysis facility or doctor, because he or she might be able to help you manage this emergency.

2.   Take a fanny pack or backpack stocked with emergency supplies, food, and medication with you if you will be away from home when severe weather or a natural disaster is predicted.

3.   Make sure your dialysis facility knows where to find you.

4.   Start your emergency diet (see page 22) as soon as an emergency situation is predicted or occurs, if it could delay your next regular dialysis treatment.

5.   If you must go to a shelter, tell the person in charge about your special health needs.

6.   If you need medical treatment, make sure your dialysis access is not used for anything other than your dialysis treatment. No one should use your access to give you fluid or medication.

7.   Follow the instructions in this booklet to be prepared.

Remember: Hospitals may not be able to give you maintenance dialysis treatments.

Travel Tips
  • Make arrangements for dialysis at your destination, or have necessary equipment or supplies delivered ahead of time.
  • Carry an extra 2-3 day supply of all your medicines/supplies in your hand-carried luggage and keep it with you at all times. A fanny pack or backpack may be more convenient. If your luggage is lost or misplaced, you will still be able to take your medicine until it is found or you can get another supply
>>--<<

Most of this is what to do after the event, but number four is key for the unique situation of a hurricane. Especially a hurricane hitting a part of the country that is vulnerable to widespread and prolonged power outages. You have the opportunity to act ahead of the event. Number four should be the lede of every CKD communication concerning Irene.
« Last Edit: August 27, 2011, 10:16:58 AM 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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