What if I Need Dialysis During an Emergency?

[okarol]

I posted in another thread about what to eat when you cannot get to dialysis http://ihatedialysis.com/forum/index.php?topic=4847.0
but figured this is good info too.

What if I Need Dialysis During an Emergency?

By Arlene Sukolsky (AAKP http://www.aakp.org/aakp-library/dialysis-during-an-emergency/ )

When in trouble or in doubt, run in circles, scream and shout!

Remember that old saying? It's exactly the wrong thing to do when we face any type of emergency but it's a normal reaction if we don't know what to do and are frightened and emotional.

Emergencies can be minor or major, local, national or worldwide, natural or man-caused but they share a few things in common - they disrupt our lives, are usually unpredictable, and may cause great loss of life, damage or hardship. In times gone by, we tended to think of emergencies as being limited to fires, floods and earthquakes but in recent times, we include everything from power brownouts to terrorism.

Dialysis patients are at particular risk since they rely on a life sustaining treatment, and that treatment and the machines used depend on power and water, the very utilities that often go down in an emergency. The communication systems we use, telephones, faxes, computers, television, etc. also rely on power, and so patients have a tendency to feel isolated and frightened when they cannot communicate with their usual caregivers. Another "run in circles" development during emergencies is that people want to go to the closest hospital emergency room (ER), whether or not their medical problems are major or minor. Hospitals and emergency rooms will be burdened with very serious cases (such as crush or burn victims) and will most likely turn away anyone who does not need immediate attention. Dialysis patients should not expect to receive a chronic dialysis treatment at the hospital. Civil defense and emergency agencies as a rule do not include dialysis clinics and dialysis patients in their plans, as I learned the hard way. This may sound harsh and uncaring but it is typical and even logical since other types of specialty clinics are also not included in such plans.

The Loma Prieta earthquake at 5:07 p.m. on Oct. 17, 1989 was my wake up call to the lack of preparedness within the dialysis community. Power, water and communications went down simultaneously and misinformation was everywhere. There was absolutely no way to learn if any clinics were damaged, which were operating and which were not. Days later, when utilities were restored, I was overjoyed to learn that minimal damage had been sustained and no patients were injured. I contacted local, state and federal disaster agencies to ask how we in the dialysis community could fit into their plans. The answer in all instances was no, no chance and good luck with developing your own plan. That was not a good enough answer, so we began a long journey (five years actually) to learn all we could about disaster preparedness. And there was a lot to learn. The tips and strategies in this article are taken from that learning experience.

We began with educational materials for the clients, i.e. the dialysis patients, and developed a handbook that has become a "best seller."  The Centers for Medicare & Medicaid Services (CMS) eventually adopted it as the standard for the nation and you can get a copy of "Preparing for Emergencies: A Guide for People on Dialysis" from their web site. We also wrote a comprehensive manual for dialysis facilities that covers all aspects of preparing for emergencies from building inspection to biological threats. This manual will eventually be added to the CMS web site as well.

If you are a dialysis patient, how do you cope during an emergency?

A general rule for emergency planning is that usually, repeat usually, critical services are restored within 72 hours. So, here are a few simple rules for dialysis patients to follow if they cannot get to their usual dialysis clinic or to any dialysis clinic. If you know what to do, you can prolong your life and manage well until conditions return to normal.

Stay at home unless you are hurt.

Begin a survival diet - 2 cups fluid per 24 hours, no fresh fruit or vegetables.

Wait at home for instructions and details about your dialysis clinic on television, radio, messenger or phone.

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

Basic recommended steps include:

Keep a record of your medical history. Up-to-date information including the cause of your renal failure, other medical conditions or allergies, the name of your regular dialysis clinic, the type of dialysis that you receive, your physician, medications you are taking, past treatments and operations along with a copy of your insurance card.

Keep a list of emergency telephone numbers. This includes your own address and phone number, those friends or relatives who you want to be contacted in an emergency, your dialysis clinic and physician.

Wear a medical emblem identifying you as a dialysis patient. If you are injured or unable to communicate, medical workers need to know quickly that you are a person on dialysis.  Although you can get these emblems as either a bracelet or necklace, a necklace may be missed if your upper body clothes are rolled up.  It is important that you do not allow any medical personnel who are not familiar with your dialysis status to inject or place anything into your vascular access.  Your social worker can help you to obtain a medical emblem.

Keep medicine, food and supplies on hand. Keep a five to seven day emergency supply of all medications on hand or the amount recommended by your doctor.  Check expiration dates.  Stock up on food and make sure it is kidney friendly.  There is a shopping list and recommended diet in the "Preparing For Emergencies" book and your renal dietitian can give you recommendations for a survival diet.

Have an emergency box at home with everything you might need. This includes such items as food, radio and batteries, can opener, first aid kit, water jugs, etc. Use the 72 hour, three day rule when you pack your box. Again, consult the booklet for suggestions.

Pack a fanny pack to carry with you if you travel. It should contain medications, a list of emergency numbers, important medical information, diabetic supplies as necessary and an extra pair of eyeglasses is always a good idea.

Know how to disinfect water at home. Keep distilled water at home for drinking or learn how to disinfect water with household chlorine bleach or purify it by bringing it to a rapid boil.  Believe it or not your telephone book has complete instructions on water disinfection in the front of the white pages under First Aid and Survival.

Know how to get off the dialysis machine in an emergency evacuation. Your dialysis staff should show you what to do in an emergency: clamp and cut or clamp and cap. Be familiar with how to use the emergency pack, which is usually attached to your dialysis machine.

Prepare your home and your family to handle emergencies. You and other members of your household will cope a lot better if you have a plan for your home and everyone knows what to do. Most communities now have classes through their fire or police departments and many have neighborhood plans. Others should not use your dialysis emergency food items so be sure that you have food and other necessary supplies for everyone in your household. Supplies include everything from paper plates and glasses to a first aid kit. Again, look in your telephone book's Customer Guide for some good suggestions. Make sure you have them in a waterproof, easily accessible place. Some people use new, clean trash cans with tightly fitted lids. Be sure you know where your gas, electric and water main shutoffs are.

What about your dialysis clinic?

Federal regulations require every dialysis clinic to have an emergency plan and that staff and patients are informed about the plan. They are also required to have periodic drills. Your clinic should have an agreement with a local hospital and other clinics in the area should they not be able to provide services. In our network, we ask that the agreements include details on exchange of staff, equipment and supplies, protection of medical records, reimbursement for services and how to identify and record services to patients from other clinics.

You should understand, however, that in an area wide major emergency, all medical care institutions may be damaged. This is another good reason to know how to manage yourself for a couple of days if you cannot get to dialysis. If you are NOT familiar with your clinic's plan and who its "backup" partners are, ask your clinic manager.

There is a common misunderstanding about emergency generators in dialysis clinics. Except for dialysis clinics located inside hospitals, there is at this time no federal requirement to have an emergency generator. Generators are expensive and require large amounts of space and ongoing maintenance. It is up to each clinic to decide whether or not to own one or to rent one during an emergency.

Ask for a copy of "Preparing for Emergencies: A Guide for People On Dialysis," published by Medicare, Publication No. 10150. You can also access it on the Internet at www.medicare.gov. It contains detailed information on all of the basic recommendations in this article.

The steps described will not work for every dialysis patient in every emergency situation. But if you are prepared, you will not panic. Most importantly, if you are prepared, the consequences of any emergency will be greatly reduced.

Arlene Sukolsky is the Executive Director of the TransPacific Renal Network and a recognized authority in this field. She is the author of several manuals for dialysis patients and clinics on emergency preparedness and has written and spoken extensively on this subject.

This article originally appeared in the September 2002 issue of aakpRENALIFE, Vol. 18, No. 2.