By Suzanne McKoy
Preparing for a disaster can be daunting, to say the least. There are so many things to consider and prepare for that you can feel like you’re missing something important. My husband and I always thought we were pretty well prepared. We have bug-out bags, outdoor skills and can hunt and grow our own food. I’ve stockpiled all sorts of items in case we can no longer run to the store for some reason. Then, about a year ago, my husband was diagnosed with kidney disease.
For a few months, the only thing on our minds was to keep him alive and get his treatment plan worked out. Once he was stable and adapting to his new lifestyle, things begin to sink in; we began to wonder what we would do in the case of a disaster, considering his health condition. We’ve discovered that preparing for an indefinite period of time for a person with a medical condition can be very challenging. But there are some things that can be done to extend the person’s health for a short period of time, and maybe even keep them alive until help arrives.
The key to preparing for a disaster when you or a family member has a health condition is knowing what you are dealing with. In our case, kidney disease means that my husband needs dialysis treatments to survive. He also has a large cocktail of prescription medications to take each day. We have made some choices in his treatment plan, which many other kidney patients may not have, that will allow us to manage his condition for a short period of time that. Our own research and questioning of the kidney team at his hospital have given us the insight and planning ability be able to continue his treatments and keep him in pretty good health for at least a month in the case of a disaster.
Because he is pre-transplant, his chances of surviving without certain things are higher than they would be post-transplant. After he receives a transplant, he will have to take anti-rejection drugs twice a day; missing them would lead to a very fast rejection of his new kidney and immediate kidney failure and death.
Not every medical condition has treatment options. Knowing what to expect, how to deal with various aspects of the condition and what you can do to help the patient survive a disaster until proper treatment can be administered is critical.
Choose treatments that don’t require electricity
When my husband was first diagnosed and began dialysis, we had to go to a dialysis center every other day. He would be hooked up for four hours to a machine that cleaned his blood and returned it to his body. Just a month after beginning treatment, we were faced with our first challenge: a snowstorm. Not only were the roads dangerous, but there was also the possibility of a power outage, which would have caused him to miss a treatment even if we got to the center safely. We did make it to that treatment and he did receive dialysis, but the ride home was terrifying. That was the turning point for me. I decided we needed to find some other way to get his treatments.
Luckily there are different modalities for dialysis and we were able to read about them, ask questions and research for ourselves what the best option would be. As we researched, we found that there was another form of dialysis that he could do at home every day, and it didn’t require electricity!
Peritoneal dialysis consists of dialysate solution being delivered to my husband’s body. My husband hangs bags of this solution on an IV pole and connects them to his catheter for his dialysis treatment. Because we get an entire month’s supply delivered each month and don’t need electricity, we know that he will be able to continue his treatments in the case of a disaster, as long as the supplies last. We were even able to take his supplies with us and go on a real vacation this past summer.
Unfortunately, there’s not much we can do to guarantee his treatment after the supplies run out. Always check to see what your options are for treating a medical condition before making a decision that may cause a rapid decline in health in the event of a loss of power or being snowed in for several days.
Because prescription medications are controlled substances, there are often times when you can only get medications refilled within a certain timeframe. This definitely puts the kibosh on building up a stockpile for situations where you can’t get to the pharmacy.
Insurance regulations and various laws concerning prescriptions make it very difficult to prepare for a disaster. If at all possible, consider using a mail order prescription service that will deliver up to a 90-days supply of medication at one time. This is not a feasible idea if your medications change regularly, but if there is one that you know you need indefinitely, make sure you have it on hand, and possibly well stocked, in the case of a disaster.
While it may appear that you doubt your medical team, take the time to explain your preparation plans and discuss alternatives with them. For example, my husband has to take a prescription binder with everything he eats to keep his phosphorous under a certain level. This is because his kidneys no longer work and dialysis does not remove phosphorous from his body. In the event that he doesn’t have his binders with him or if a disaster occurs, we’ve learned that he can take calcium antacids such as Tums to help with phosphorous levels. This is not recommended if his prescription is available. The antacid won’t work nearly as well as binders, but it is better than nothing. In the event that we have a disaster, we have Tums stockpiled in case his prescription binders run out. This will help keep the phosphorous from building up in his body and causing severe muscle cramps and pain.
Dialysis strips his system of good things as well as bad, which leaves him dependent on a renal vitamin and a high protein diet to help keep the things he needs in his body. In the event that we are unable to renew his prescription vitamin, we know which vitamins and supplements he needs to keep him going, and we have a supply of those on hand.
One thing to remember is that many of the medicines that people take are not to treat their condition but to treat the side effects of the main condition. There may be alternatives in the event that the medication is not available.
Understand the diet requirements for the condition
Nearly every medical condition is affected either positively or negatively by diet. In my husband’s case, if there was a disaster and he was unable to perform his dialysis treatments, his health would decline rapidly. However, there are some things he could do with diet to help him maintain for a few days longer than if he just ate whatever he wanted.
Limiting liquids, avoiding high phosphorous foods and eating a lot of protein would be helpful for a short period of time. Our preparation and disaster foods need to fit the bill for both his needs as a dialysis patient and as a person with kidney failure who can’t get his dialysis treatment. Find out as much as you can about how you can maintain your health with diet in the case of a disaster. Prepare and stockpile the foods you will need.
While the idea of facing a disaster is frightening enough on its own, it can be even more so for families of people with serious medical conditions. It has been surprising to me to find so many patients and families who do not question doctors, or who have no idea why they take a specific prescription or what they would do if they could not get their medicines. Patients need to advocate for themselves and they need to make sure their family and caregivers are aware of all aspects of their condition. This is important even if there is no disaster. Knowing what you are dealing with is the key to survival.
Learning to live with a serious medical condition like kidney disease means major changes in nearly every aspect of your life. Add to that the fear of a disaster where you may not have access to medical treatment or medicines, and the outlook is downright dire. Preparation and knowledge can make a life-or-death difference in such a situation. We like to think we are prepared, but as with any “hypothetical” situation, we won’t know for sure until we’re living it.
Suzanne McKoy is a wife and mother residing in rural Virginia where she writes and is her husband’s fulltime caregiver and potential kidney donor as he battles kidney disease.