summer 2018

ask the attorney

family matters - surrogacy: a primer

speeding past 50: am i ready?

focus topic: what is most important to you when a disaster strikes? be prepared.

disaster ahead: cystic fibrosis-related diabetes (cfrd)

searching for the cure: on patient's perspective

cystic fibrosis: more than a disease

transplant talk: i have what now?

financial solutions: the way we work, earn, and save is drastically changing

wellness: living mindfully with cf 

in the spotlight with colleen adamson

ask the attorney

Readers of CF Roundtable asked questions related to insurance coverage and the ability to work and still receive Social Security benefits. No reference made in this column is to a specific situation. Nothing in this column is meant to be legal advice about a specific situation but is only meant to be information.


The CF Legal Information Hotline (CFLIH) can answer questions related to Social Security benefits, Medicare, Medicaid, health insurance, employment and education. If you have questions please e-mail CFLegal@sufianpassamano.com to schedule a time to speak with the CFLIH.

Question 1: Can a person who stops work due to his health continue on his employer’s health insurance plan without opting for COBRA?
Answer: A small number of employers allow a person to stay on the employer’s health insurance policy as a covered employee if the employee is receiving short-term disability benefits and/or long-term disability benefits.
There is no federal law that requires a continuation of health insurance benefits with the same employer contribution that was made when the employee was working at the company. For example, if the employer was paying $400 a month for the insurance policy and the employee was paying $200 a month, the employer does not have to continue paying $400 a month if the employee is on short-term or long-term disability. However, if the person is on FMLA leave, the employer does have to continue contributing to insurance premiums if before the employee went on leave the employer was contributing to the health insurance premium cost.


A limited number of employers do continue to pay a share of health insurance costs if an employee is on short-term disability or long-term disability offered by the company. Typically, the continued payment of health insurance premiums will happen only at large companies. But, occasionally, a smaller employer will continue to pay the health insurance premiums. Keep in mind this rarely happens. This means that a person with CF who is considering stopping work due to his or her health should make sure he or she has the funds to pay the full cost of the health insurance premiums under COBRA. It is best to at least take one month of COBRA coverage if a person thinks he or she will be able to secure other insurance coverage. Once the time period to enroll in COBRA expires, the person cannot then ask for COBRA coverage.


If the employer does not provide a continuation of the employer’s help with health insurance premiums, then the person can usually extend coverage under COBRA (the employer who has fewer than 20 employees does not have to offer COBRA). The employee then pays the full cost of coverage. The employee receives 18 months of COBRA if he leaves his job for any reason. If the person becomes eligible for Social Security Disability benefits, then the person will get an additional 11 months of COBRA:
1. The person obtains a positive decision from Social Security within 18 months of stopping work due to disability; and
2. The employee provides a copy of the Social Security Notice of Award of benefits to their employer and insurance company within 60 days of receiving the SSA Notice of Award.
A person who receives Social Security Disability benefits will become eligible for Medicare after 29 full months of being unable to engage in substantial gainful employment, which SSA defines as being unable to work more than 20 hours a week and unable to make more than $1,180 a month from work activity (before taxes are taken out of the check).


Question 2: I sometimes receive small payments when I speak at CF-related events. Usually a CF-related drug company sponsors the speech and pays me an honorarium and pays for my expenses such as airline tickets, hotel and food costs. When the company pays for expenses I incur, is that money counted toward the work earnings limit set by Social Security?
Answer: It depends.


Increasingly companies that sell CF-related medication or supplies are paying people with CF to speak at a variety of events. The drug company then pays the expenses the person incurs to travel to the event such as airline tickets, hotel costs, rental car and food costs. If reimbursement of these costs is characterized as payment for services rendered, then the money may be reported to the IRS as work earnings income.


If a person receives SSI or SSDI benefits, then the person should be concerned about expense reimbursement being reported to the IRS as work earnings. If the person is also paid an honorarium, then payment of expenses as work income could put the person over the allowable work income limit set by Social Security.


The person with CF should ask the company sponsoring the speech and providing payment to the person with CF how an expense reimbursement will be reported to the IRS. If it is possible for the drug company to pay for expenses directly, that will avoid the problem of SSA counting expense reimbursement as work earnings.


Question 3: How much can I make each month from work if I receive Social Security Disability Insurance benefits?
Answer: A person who receives Social Security Disability Insurance (SSDI) benefits has a monthly allowable amount for work earnings of $1,180 (before taxes are taken out of the check).


Social Security may allow a person a total of nine months in which the person can go over the $1,180 amount. Many people with CF think that SSA must give them nine months of trial work months. However, in the past year, Social Security offices around the country are saying there is not a mandate that a person be given a nine-month trial work period. Instead SSA says that their rules allow them to find a person is capable of substantial gainful activity (making more than $1,180 and working more than 20 hours a week) if the SSA representative determines there is evidence the person can engage in substantial gainful activity. Even if the person has not worked for nine months over the allowable amount, some SSA representatives are terminating benefits because the representative finds that the person is capable of working over the allowable monthly amount.


This interpretation by many SSA representatives of the application of the nine-month trial work is very important to people with CF who are working part time and receiving benefits.


A discussion of the trial work period on the SSA website is confusing. The SSA website makes it seem like a person uses up only one trial work month if he works making more than $1,180 in a month. However, every time a person works making more than $860 a month (before taxes are taken out of the work check) one trial work month is used. This confusion often leads to a person with CF going over the allowable amount because he thinks he has not used all of his nine-month trial work period. Once the person has used up his nine-month trial work period, the next month the person makes over the $1,180 the person loses benefits.


Typically, SSDI takes at least 12 months to see that a person has gone over the allowable amount for work earnings and so then the person has an overpayment for any month in which benefits were paid after the month the person went over the allowable work earnings amount.


For example, a person has an SSDI check of $1,000 a month. The person goes over the allowable work earnings amount in March 2018. SSA figures this out in March 2019. SSA issues an overpayment notice in April 2019 and the person owes SSA $12,000 for the 12 months after the person went over the allowable work earnings amount.

Spirit Medicine: The Spirit of Comparisons

Readers of CF Roundtable asked questions related to insurance coverage and the ability to work and still receive Social Security benefits. No reference made in this column is to a specific situation. Nothing in this column is meant to be legal advice about a specific situation but is only meant to be information.


The CF Legal Information Hotline (CFLIH) can answer questions related to Social Security benefits, Medicare, Medicaid, health insurance, employment and education. If you have questions please e-mail CFLegal@sufianpassamano.com to schedule a time to speak with the CFLIH.

Question 1: Can a person who stops work due to his health continue on his employer’s health insurance plan without opting for COBRA?
Answer: A small number of employers allow a person to stay on the employer’s health insurance policy as a covered employee if the employee is receiving short-term disability benefits and/or long-term disability benefits.
There is no federal law that requires a continuation of health insurance benefits with the same employer contribution that was made when the employee was working at the company. For example, if the employer was paying $400 a month for the insurance policy and the employee was paying $200 a month, the employer does not have to continue paying $400 a month if the employee is on short-term or long-term disability. However, if the person is on FMLA leave, the employer does have to continue contributing to insurance premiums if before the employee went on leave the employer was contributing to the health insurance premium cost.


A limited number of employers do continue to pay a share of health insurance costs if an employee is on short-term disability or long-term disability offered by the company. Typically, the continued payment of health insurance premiums will happen only at large companies. But, occasionally, a smaller employer will continue to pay the health insurance premiums. Keep in mind this rarely happens. This means that a person with CF who is considering stopping work due to his or her health should make sure he or she has the funds to pay the full cost of the health insurance premiums under COBRA. It is best to at least take one month of COBRA coverage if a person thinks he or she will be able to secure other insurance coverage. Once the time period to enroll in COBRA expires, the person cannot then ask for COBRA coverage.


If the employer does not provide a continuation of the employer’s help with health insurance premiums, then the person can usually extend coverage under COBRA (the employer who has fewer than 20 employees does not have to offer COBRA). The employee then pays the full cost of coverage. The employee receives 18 months of COBRA if he leaves his job for any reason. If the person becomes eligible for Social Security Disability benefits, then the person will get an additional 11 months of COBRA:
1. The person obtains a positive decision from Social Security within 18 months of stopping work due to disability; and
2. The employee provides a copy of the Social Security Notice of Award of benefits to their employer and insurance company within 60 days of receiving the SSA Notice of Award.
A person who receives Social Security Disability benefits will become eligible for Medicare after 29 full months of being unable to engage in substantial gainful employment, which SSA defines as being unable to work more than 20 hours a week and unable to make more than $1,180 a month from work activity (before taxes are taken out of the check).


Question 2: I sometimes receive small payments when I speak at CF-related events. Usually a CF-related drug company sponsors the speech and pays me an honorarium and pays for my expenses such as airline tickets, hotel and food costs. When the company pays for expenses I incur, is that money counted toward the work earnings limit set by Social Security?
Answer: It depends.


Increasingly companies that sell CF-related medication or supplies are paying people with CF to speak at a variety of events. The drug company then pays the expenses the person incurs to travel to the event such as airline tickets, hotel costs, rental car and food costs. If reimbursement of these costs is characterized as payment for services rendered, then the money may be reported to the IRS as work earnings income.


If a person receives SSI or SSDI benefits, then the person should be concerned about expense reimbursement being reported to the IRS as work earnings. If the person is also paid an honorarium, then payment of expenses as work income could put the person over the allowable work income limit set by Social Security.


The person with CF should ask the company sponsoring the speech and providing payment to the person with CF how an expense reimbursement will be reported to the IRS. If it is possible for the drug company to pay for expenses directly, that will avoid the problem of SSA counting expense reimbursement as work earnings.


Question 3: How much can I make each month from work if I receive Social Security Disability Insurance benefits?
Answer: A person who receives Social Security Disability Insurance (SSDI) benefits has a monthly allowable amount for work earnings of $1,180 (before taxes are taken out of the check).


Social Security may allow a person a total of nine months in which the person can go over the $1,180 amount. Many people with CF think that SSA must give them nine months of trial work months. However, in the past year, Social Security offices around the country are saying there is not a mandate that a person be given a nine-month trial work period. Instead SSA says that their rules allow them to find a person is capable of substantial gainful activity (making more than $1,180 and working more than 20 hours a week) if the SSA representative determines there is evidence the person can engage in substantial gainful activity. Even if the person has not worked for nine months over the allowable amount, some SSA representatives are terminating benefits because the representative finds that the person is capable of working over the allowable monthly amount.


This interpretation by many SSA representatives of the application of the nine-month trial work is very important to people with CF who are working part time and receiving benefits.


A discussion of the trial work period on the SSA website is confusing. The SSA website makes it seem like a person uses up only one trial work month if he works making more than $1,180 in a month. However, every time a person works making more than $860 a month (before taxes are taken out of the work check) one trial work month is used. This confusion often leads to a person with CF going over the allowable amount because he thinks he has not used all of his nine-month trial work period. Once the person has used up his nine-month trial work period, the next month the person makes over the $1,180 the person loses benefits.


Typically, SSDI takes at least 12 months to see that a person has gone over the allowable amount for work earnings and so then the person has an overpayment for any month in which benefits were paid after the month the person went over the allowable work earnings amount.


For example, a person has an SSDI check of $1,000 a month. The person goes over the allowable work earnings amount in March 2018. SSA figures this out in March 2019. SSA issues an overpayment notice in April 2019 and the person owes SSA $12,000 for the 12 months after the person went over the allowable work earnings amount.

Family matters – Surrogacy: A Primer

I have never had a desire to be pregnant. I’m weird, I know. Sometimes I think there is something biologically wrong with me that I haven’t had this urge that seems so natural for everyone else. But just because I have never wanted to be pregnant does not mean I haven’t wanted children. And the great news is there are many ways to have a family. As my husband and I are researching our options, I thought I would share some of our research about alternative ways to build a family, starting with surrogacy.


I first became fascinated by surrogacy in high school. A kid in my class was born via a surrogate and was very open about it. Even at that point in my life, I assumed I would never be pregnant, so my best friend offered to be my surrogate. Neither of us knew much of anything about surrogacy, but that set off my desire to learn more about it – I even wrote my senior thesis on it in college!


Why is surrogacy a good option for those of us with CF?
Surrogacy is a great way to have a child that is genetically related to you without having to carry the child. For many women with CF, carrying a child for nine months is risky. With surrogacy, you can do a tune up right before the baby comes to make sure you’re in the best possible health. You can also split childcare duties much more easily since breast feeding is a moot point. The best arrangement I’ve heard from a woman with CF who did surrogacy was that her husband was in charge of all the night feedings from day one so that she could get a full night’s rest every night and have the energy to care for their baby during the day.


What is surrogacy?
Surrogacy is an arrangement whereby a woman agrees to carry the child of another person(s) and relinquish parental rights after the birth. Here are some of the key terms used in surrogacy:


• “Traditional” surrogacy: Sperm is injected into the surrogate mother to impregnate her, using the surrogate’s eggs. This is very rare and usually not legal due to the entanglement of the surrogate being related to the child.
• Gestational surrogacy: An embryo is created through in vitro fertilization (IVF) then implanted into the surrogate. The eggs and sperm can be from the intended parents, or from other donors, but NOT the surrogate or her partner. This is the most common type of surrogacy that is legal in most of the U.S.
• Intended Parent: This is the person or people who initiated the surrogacy process so that they can have a child.
• In Vitro Fertilization, IVF: A process by which eggs are fertilized by sperm in a laboratory setting. The fertilized eggs are then transferred to a woman’s uterus for implantation. This can be used for surrogacy or for people who are having trouble getting pregnant.
• Preimplantation Genetic Screening, PGS: Genetic screening for embryos prior to implantation, most commonly done to screen for chromosomal abnormalities to reduce the chance of miscarriage. It can also be used to screen embryos for CF if your partner is a carrier. This is optional and can be controversial for some.
• Birth Order: The legal way to make sure the intended parents are the legal parents of the baby, usually done through a court order. The process for this varies from state to state and depends on whether surrogacy is legal there.


Is surrogacy legal?
Laws regulating surrogacy vary widely from state to state, and even county to county in some places. The best resource I have found for finding out about surrogacy laws is: https://www.creativefamilyconnections.com/us-surrogacy-law-map/
How do I obtain a birth order?


Some states, like California and Connecticut, grant a legal right to parenthood through pre-birth court orders, and the intended parents are placed on the birth certificate from the get-go. The couples or their lawyer must go to the court and fill out the paperwork ahead of the birth. In other states, like New York or New Jersey, surrogacy is illegal, so the contracts are unenforceable. A couple must rely on the good will of the surrogate to go to court and relinquish her parental rights after which the intended parents must formally adopt the child, which can take many months to years. The best option if you live in a state that bans surrogacy is to find a surrogate in a state that does recognize surrogacy contracts, let the baby’s birth be registered in that state, then return home as the baby’s legal parent(s).


Most states’ laws are somewhere in between California and New York, and laws continue to evolve. Many states have only legal precedent with no relevant laws on the books. New York is currently exploring legislation to make surrogacy legal, and this spring New Jersey’s legislature passed a law legalizing gestational surrogacy. It is now on the governor’s desk so by the time this article is published surrogacy could be legal there!


What is a surrogacy contract? Do I need one?


Even when you live in a state that allows surrogacy, you will need legal help. Both you and your surrogate must have your own lawyer to represent your interests in drawing up the contract. The contract will spell out:


• Financial agreements surrounding compensation for medical and other related expenses.
• Agreement about healthcare providers and birth plans.
• Confirmation that the surrogate has at least one child of her own.
• Acknowledgement that all parties understand the process and medical risks it entails. This can be done through separate psychological evaluations for the intended parents and surrogate, and is often required by agencies.
• Agreement for the intended parents and surrogate to obtain the birth orders.
• Relinquishment of parental rights by the gestational surrogate and her partner.
• And, optionally, social media clauses preventing both parties from posting about the pregnancy on social media unless mutually agreed upon, or any other provisions you and your surrogate discuss.


How do I find a surrogate? Should I ask a friend?
There are surrogacy agencies in many states that will help you find a surrogate and guide you through the relevant laws and paperwork. Generally, a gestational surrogate needs to have a child before she can become a surrogate. Surrogates through an agency tend to be more expensive because the agency and usually the surrogate charges fees. Sometimes women who seek to be a surrogate contact fertility clinics that then facilitate the process without the need of an agency.


If a friend or relative offers to be a surrogate, this eliminates the agency middle man, but fertility clinics will still require the surrogate to have her own lawyer and have a completed contract before they will proceed with the embryo transfer. This ensures the surrogate’s intent to transfer legal custody of the child to the intended parents, and also lays out the financial arrangement.
What is my doctor’s role in the process?


As with everything in CF, you want your doctor to be on board with your decision. Becoming a parent through any means will take a toll on your health, so the best place to start talking about your plans is with your partner, then your doctor. If you undergo egg harvesting, there are a lot of intense hormone regimens that may need to be coordinated with your CF medications. You may want to have your partner tested for the CF gene before you start so that can decide if you want to screen the embryos for CF before implantation. It is not unusual to need many rounds of IVF, which can take a toll on your body – and mind.
Before the baby arrives, you can do a tune up so that you are as healthy and strong as possible. Your doctor and social worker can help counsel you about parenting techniques to maximize your own health once the baby is consuming a lot of your time and energy. Your CF team is there to support you, and the more you tell them the more they are able to help you.
This is all great, but how much does it cost?


A lot. There is no getting around the fact that surrogacy is expensive, but there are ways to help minimize your costs. Typical costs include paying for IVF (potentially many rounds), medical care for your surrogate, sometimes compensation for medical leave for your surrogate, and legal fees.


The first thing to check is what your insurance covers. Many insurance companies cover at least some of the costs of the IVF, embryo creation and storage. You might also find the surrogate’s own insurance will cover many of the costs of her pregnancy, with you just footing the bill for co-pays and deductibles. There are also secondary insurance plans you can buy to help cover some of these costs. It’s important to ask these questions before you get too far into the process if money is a concern. It is possible that your insurance company will cover more than you thought. At the end of the day, my best advice for this and all financial planning is: plan for the worst and hope for the best. Having a baby is expensive for everyone, but having a baby through surrogacy adds a number of costs if you want to ensure the process is legal. The Internet is full of horror stories, so it’s best to be prepared!


I hope I’ve given you a better understanding of surrogacy and what questions to ask when you are considering it. If you want to talk with someone who has been a surrogate, the CF Foundation Peer Mentorship program can match you with someone who has done it to tell you about their experience.

speeding past 50: am i ready?

This May has been incredible. We have had such lovely weather that I almost feel guilty for having it so good. (Notice that I said “almost,” because I really don’t feel guilty. We deserve it as much as anyone else.) The only problem with having such a warm May is that we have had almost no rain. We need rain to keep everything green. After the wildfires that we had last year, we hope that this year will be easier on the firefighters. From my point of view, I’d like to have fewer fires so that I can go out into the great outdoors and still be able to breathe. Last year I spent many weeks staying inside because of smoke from a wildfire that still has some hotspots. Which takes us right to our Focus topic for this issue – What Is Most Important To You When A Disaster Strikes?


None of us likes to think of being caught by any disaster, but many of us will be caught by one disaster or another at some time. Right now many people in Hawaii and Guatemala are dealing with active volcanoes. People in other places are having to put up with fires, earthquakes, landslides, floods, storms of many types and other problems of which I am not aware. Some of these will cause people to have to leave their homes in a hurry. Evacuations are difficult enough for most people, but they can be really hard for people who have a chronic health condition such as CF. It is truly important for us to have a plan in mind.


We need to have a plan for what we absolutely must have with us and how to get it quickly. It is important to keep a list of what medicines we take and what the doses are and when we take them. Actually, we all should have such a list that we keep with us at all times. I know that it makes my doctor visits much easier to be able to hand such a list to the person who is getting all the info at the beginning of a visit.


It is important to have our medicines available to access easily so that we can be ready to go in only a short time. We shouldn’t have to spend limited minutes looking for this med or that one. If some of our meds need special handling, such as Pulmozyme, we must make plans for how to keep it at the correct temperature. I always have chemical ice packs frozen in our freezer that we can use to keep Pulmozyme cool in an insulated cooler. By putting the air-filled packing around the meds, I don’t have to worry about the meds getting too cold.


Next there are the pieces of equipment that we use. There are several that come to mind. I use a Waterpik for irrigating my sinuses. I also have a compressor to power my inhalations. There are nebulizers to go with that. Many of us also have some kind of vest and its power source. Another somewhat cumbersome piece of equipment is my portable oxygen concentrator (POC) and its extra batteries and chargers.


I feel that it is important to talk about potential disasters and how we will handle them. We need to put into our brains that when there is a disaster (notice that I didn’t say if, it is important to think when), I will take…and make lists of what those things are. Be sure you know where each item is kept and how to get to it. Have plans for how you will keep temperature-sensitive meds at their correct temperatures.


I know that I can run my POC and my nebulizer compressors on the power of my car. I have those connectors and cords in my car. In an emergency, I don’t have to hunt for them. That should help me get through at least the first few hours or days of any disaster that might strike here. Fortunately, we live high enough that we don’t have to be too concerned about flooding. (If we got flooded, it would mean that water had risen 400-500 feet above normal. Highly unlikely, I think.)


Our largest concern is fire. We live in a wooded area and have many tall trees around our house. Whenever there have been fires in our area, we have paid very close attention to which way the wind was blowing and have been ready to get out if we needed to. So far, we have been lucky. No fire has gotten nearer to us than about two-and-a-half miles. That’s far enough away to be manageable and as long as the wind is away from us I am able to breathe okay.


My husband and I always have kept “go bags” ready. A go bag is a small pack such as a DOP kit or a shaving kit. In these we each keep items such as a toothbrush, toothpaste, mouthwash, shampoo, deodorant, powder, bandage strips (like Band-Aids), dental floss, razor, hair gunk, hair brush and comb, small mirror, bathing soap, little sewing kit and so on. These items always are handy to grab and go. We know where they are and that they always are ready for us.


I have a down-filled comforter that I keep in my favorite chair. I use it to keep warm, since I always seem to be a little chilly. I know that I definitely want to have that with me. It is exactly the right weight and size to keep me happy.


Another very important item is my pair of ear plugs. They protect my ears from the loud sounds of my various pieces of equipment. Since I am old, I know that my hearing isn’t what it used to be. I want to be sure to protect all that I have left. My eyeglasses fit into that same category. Must protect those old eyes. These items don’t take up a lot of room, but they do provide important protection.


Along with all of this medical equipment, we have food and clothing ready to go. We have one of the prepackaged containers of MREs and keep another similar-sized container of utensils and equipment for cooking ready to grab at a moment’s notice.
We have bottled water on hand in the house as well as in the car. This is a necessity all of the time. (Our capital city just went through a “don’t use the water” advisory, because of an algae bloom in the reservoir. Many people didn’t have water on hand and had to rush out to buy some.) It is better to be prepared.


So, let’s see, we have lists of meds and equipment, plans on how to gather and use them, go bags with personal items, food and water (if necessary) and clothes. Just making lists and thinking about where everything is and how you will access it can help to get you prepared.


Of course, I hope you never have to use your disaster plan, but I feel that you will be able to handle it much better if you are well prepared. Remember to think “when a disaster happens.” I wish you safe harbor.


Stay healthy and happy.

Focus Topic : What Is Most Important To You When A Disaster Strikes? Shake, Rattle and Roll

This May has been incredible. We have had such lovely weather that I almost feel guilty for having it so good. (Notice that I said “almost,” because I really don’t feel guilty. We deserve it as much as anyone else.) The only problem with having such a warm May is that we have had almost no rain. We need rain to keep everything green. After the wildfires that we had last year, we hope that this year will be easier on the firefighters. From my point of view, I’d like to have fewer fires so that I can go out into the great outdoors and still be able to breathe. Last year I spent many weeks staying inside because of smoke from a wildfire that still has some hotspots. Which takes us right to our Focus topic for this issue – What Is Most Important To You When A Disaster Strikes?


None of us likes to think of being caught by any disaster, but many of us will be caught by one disaster or another at some time. Right now many people in Hawaii and Guatemala are dealing with active volcanoes. People in other places are having to put up with fires, earthquakes, landslides, floods, storms of many types and other problems of which I am not aware. Some of these will cause people to have to leave their homes in a hurry. Evacuations are difficult enough for most people, but they can be really hard for people who have a chronic health condition such as CF. It is truly important for us to have a plan in mind.


We need to have a plan for what we absolutely must have with us and how to get it quickly. It is important to keep a list of what medicines we take and what the doses are and when we take them. Actually, we all should have such a list that we keep with us at all times. I know that it makes my doctor visits much easier to be able to hand such a list to the person who is getting all the info at the beginning of a visit.


It is important to have our medicines available to access easily so that we can be ready to go in only a short time. We shouldn’t have to spend limited minutes looking for this med or that one. If some of our meds need special handling, such as Pulmozyme, we must make plans for how to keep it at the correct temperature. I always have chemical ice packs frozen in our freezer that we can use to keep Pulmozyme cool in an insulated cooler. By putting the air-filled packing around the meds, I don’t have to worry about the meds getting too cold.


Next there are the pieces of equipment that we use. There are several that come to mind. I use a Waterpik for irrigating my sinuses. I also have a compressor to power my inhalations. There are nebulizers to go with that. Many of us also have some kind of vest and its power source. Another somewhat cumbersome piece of equipment is my portable oxygen concentrator (POC) and its extra batteries and chargers.


I feel that it is important to talk about potential disasters and how we will handle them. We need to put into our brains that when there is a disaster (notice that I didn’t say if, it is important to think when), I will take…and make lists of what those things are. Be sure you know where each item is kept and how to get to it. Have plans for how you will keep temperature-sensitive meds at their correct temperatures.


I know that I can run my POC and my nebulizer compressors on the power of my car. I have those connectors and cords in my car. In an emergency, I don’t have to hunt for them. That should help me get through at least the first few hours or days of any disaster that might strike here. Fortunately, we live high enough that we don’t have to be too concerned about flooding. (If we got flooded, it would mean that water had risen 400-500 feet above normal. Highly unlikely, I think.)


Our largest concern is fire. We live in a wooded area and have many tall trees around our house. Whenever there have been fires in our area, we have paid very close attention to which way the wind was blowing and have been ready to get out if we needed to. So far, we have been lucky. No fire has gotten nearer to us than about two-and-a-half miles. That’s far enough away to be manageable and as long as the wind is away from us I am able to breathe okay.


My husband and I always have kept “go bags” ready. A go bag is a small pack such as a DOP kit or a shaving kit. In these we each keep items such as a toothbrush, toothpaste, mouthwash, shampoo, deodorant, powder, bandage strips (like Band-Aids), dental floss, razor, hair gunk, hair brush and comb, small mirror, bathing soap, little sewing kit and so on. These items always are handy to grab and go. We know where they are and that they always are ready for us.


I have a down-filled comforter that I keep in my favorite chair. I use it to keep warm, since I always seem to be a little chilly. I know that I definitely want to have that with me. It is exactly the right weight and size to keep me happy.


Another very important item is my pair of ear plugs. They protect my ears from the loud sounds of my various pieces of equipment. Since I am old, I know that my hearing isn’t what it used to be. I want to be sure to protect all that I have left. My eyeglasses fit into that same category. Must protect those old eyes. These items don’t take up a lot of room, but they do provide important protection.


Along with all of this medical equipment, we have food and clothing ready to go. We have one of the prepackaged containers of MREs and keep another similar-sized container of utensils and equipment for cooking ready to grab at a moment’s notice.
We have bottled water on hand in the house as well as in the car. This is a necessity all of the time. (Our capital city just went through a “don’t use the water” advisory, because of an algae bloom in the reservoir. Many people didn’t have water on hand and had to rush out to buy some.) It is better to be prepared.


So, let’s see, we have lists of meds and equipment, plans on how to gather and use them, go bags with personal items, food and water (if necessary) and clothes. Just making lists and thinking about where everything is and how you will access it can help to get you prepared.


Of course, I hope you never have to use your disaster plan, but I feel that you will be able to handle it much better if you are well prepared. Remember to think “when a disaster happens.” I wish you safe harbor.


Stay healthy and happy.

cfroundtable@usacfa.org

USACFA
9450 SW Gemini Dr

PMB 43881

Beaverton, OR 97008

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*The CF Roundtable does not give medical advice. Any medical opinions represented in these articles are those of the writer and do not represent the views of USACFA, any of our community partners, or any other group or individual. We strongly suggest you consult your doctors regarding any medical references and before altering your medical regimen in any way. USACFA does not endorse any products or procedures. 

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© United States Adult Cystic Fibrosis Association 2019

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