Traveling With CF: Plan Ahead, Be Flexible, and Accept Help

By Ella Balasa

Looking up at the rising wall of stone, sweat droplets beading on my forehead, I think about the hundreds of steps between me and the top of the walls of the city of Dubrovnik, Croatia. I want to see the view from the top, but I feel the discomfort of what-ifs welling inside me … what if I hold up the line going up the stairs because I need breaks? What if I pass out from shortness of breath? What if my lung collapses again from taking such heavy breaths with only 25 percent FEV1?

Those were my thoughts last August during my European adventure.

The first six months of 2017 had been difficult. I had three surgeries — each two months apart — on my lung because of a reoccurring lung collapse. I spent weeks in the hospital and then weeks recovering at home. I went from barely walking around my house to building up the strength to walk on the treadmill for 30 minutes a day, only to restart the process each time after the next two surgeries. There were moments I never thought I would get stronger, that I’d be confined to my house with 24/7 supplemental oxygen, chained to an oxygen concentrator that allowed me to breathe.

Slowly I got stronger and — after the third surgery — the lung held. I had been planning this trip since before my medical issues began, and I wanted to make it a reality. I already had to cancel a trip to Vegas for my 25th birthday and a Fourth of July get-together with my best friends. I would be heartbroken if I had to add this trip to that list.

Gabriella-Balasa-Traveling-Quote-Orginal

In the days leading up to my trip, the fear of another lung collapse (pneumothorax) still terrified me. A pneumothorax occurs when air is trapped between your chest wall and your lung. This trapped air pushes on the lung, allowing less room for the lung itself in the chest cavity, thereby collapsing it.

When there is a decrease in air pressure at higher altitudes, air molecules expand, occupying more space. Because of my history of lung collapses, there was a chance that I might have a slight air pocket between my lung and chest wall. If so, the altitude change in an airplane could have expanded this air pocket, making the collapse much larger and dangerous.

Some might think it’s too risky to travel outside the country if you have a chronic illness, where the possibility of needing medical attention is high, and the constant awareness of symptoms and management of medications and treatments are a necessity.

There certainly are times when the risks outweigh the benefits. In my situation, there will always be a risk, but the level of potential pleasure to be gained makes an attempt worthwhile.

Planning for the Trip

Being prepared was important and eliminated some of the anxiety associated with travel. It was also necessary to relax about the parts that were not in my control.

I made sure I had my flight insured and bought travel insurance, and I carried the documents with me. I counted and packed the amount of medications I would need, plus extra.

I did not worry about packing light. I require the amount of luggage of a family of four. In the past, this has embarrassed me. We all stereotype women and their extra bags, but I need: A rolling luggage bag for my vest, a roller for my oxygen concentrator, my suitcase of clothes and personal products, and a carry-on backpack of medications. I do not check any of my nebulizing medications and machine, inhalers, enzymes, and antibiotics in case my suitcase gets lost. These are the items I have to have, and it would be a nightmare tracking them down in a foreign country.

I opted for special services through the airline for assistance with getting from one gate to the next between flights and to help carry heavy bags. Having 25 percent lung function, it’s tiresome to walk distances, and it’s not possible for me to carry anything remotely heavy. This was the first time I had used this service. I’ve never liked being seen as different or needing special accommodations. However, I have realized, as my disease progresses, that doing everything everyone else does is not always possible, and it’s OK.

And, it turned out to be a wise decision. As I got off one of my flights, I was met by an airline employee with a wheelchair and a sign with my name. I had 20 minutes before my next flight was to depart JFK airport in New York, and my gate was at the other end of the terminal. With only 10 minutes to go, this gentleman started running as he wheeled me through the airport. By the time we got to the gate, he was profusely sweating. I was the last one to board! I would have missed my flight without this assistance.

What I Learned

First, I learned to be comfortable with strangers seeing me doing CF-related stuff, like wearing a mask and using an oxygen concentrator on an airplane, and doing a breathing treatment on a park bench, while coughing and spitting into tissues. Here is a picture of me doing exactly that in Split, Croatia.

Gabriella-Balasa-Traveling-Nebulizer-Featured-Rectangle
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NuvoAir Launches Air Next spirometer– and it uses Bluetooth!

by- Market Insiders, PR Newswire

“The Air Next uses Bluetooth Low Energy, which is a more efficient and cost-effective form of wireless technology, to instantly forward this data from the spirometer to a smartphone or tablet.”

If you’re like me and you very much dislike the extra ten seconds it takes out of your day to write down and journal your spirometry numbers, keep reading. And too, if you’re like me and you forget to bring that journal sheet with you to your doctor to show him your numbers, fear not- you don’t even have to leave your house. Just share it through the cloud. Yes, I know… another cloud.

For those of us who have received a transplant– I believe you know this well. After your surgery you are to use spirometry everyday. Everyday. For a few reasons we are told. To check for rejection, if you’re spirometry numbers are declining. To see, for both personal and medical purposes where you live (what your baseline FEV1 is). Then if you want to brag and show someone. Me: “Look mom, I am taking care of myself. Today I went up 3%.”
It’s very important. My doctors use my home numbers as if I’m doing my PFT’s at their office.
And lastly, this new Air Next looks cool! It’s not like the one hospitals give you that looks like you’re blowing into a 1950’s portal, that’s designed like the inside of a pinball machine. Seriously, check this thing out!

To keep reading visit the article below; also make sure to check out the images:
http://markets.businessinsider.com/news/stocks/nuvoair-launches-air-next-revolutionary-new-home-device-to-help-those-with-serious-lung-conditions-1001941321

How to be a Hermit in Flu Season – Top 10 Things to do to Avoid Winter Bugs

By: Beth Sufian

In the past month, many newspapers have reported that large numbers of people in the United States have fallen ill from widespread flu in every state except Hawaii.  People with CF are especially vulnerable to flu and other viruses that pop up in winter.  People spend more time indoors so it is easier for flu and viruses to spread.  I remember one of the first articles I read in CF Roundtable was by Joe Kowalski one of the founders of CF Roundtable.  He wrote about being a hermit during winter and how it reduced his incidence of getting sick.  I thought it was an interesting idea and after 18 years of doing a similar thing in winter, I thought I would share my strategies.

Here is a list of the top 10 things I do to try and reduce the likelihood of getting sick in winter. I know some people are already anxious about getting sick and this blog post is not meant to increase anxiety.  My hope is that one or more of these strategies may help some of you stay healthy during the winter.

Please share any effective strategies you use in the comments section below

1.Take Your Own Pen                                                                                                              On your next trip to the store watch as people take the pen at the checkout and sneeze or cough right on the pen. When you go to the store, doctor’s office or any other public place where you may need to sign something bring your own pen. It is easy to find pens with a stylus cap to use in stores that use a screen for signatures.

2. Take a Small Bottle of Hand Gel and a N-95 Mask                                                    If you find you have touched a surface that has been used by many like a door handle then make sure you have a bottle of hand sanitizer so that you can clean your hands.  In addition, keep a N-95 mask in your purse or backpack.  If you find yourself in a space with a person or many people who are coughing or sneezing you can quickly put on the mask.  If you feel self-conscious about wearing a mask just remember the last time you were sick and that should put those thoughts to the back of your mind.

3. Wear Gloves                                                                                                                        Wearing gloves can help you avoid germs when out in public.  While it is advised you should not shake hands with people this is a hard habit to break.  Wearing gloves allows you to shake hands and lower the risk of passing germs to yourself.  However, you need to make sure you wash the gloves frequently.

4. Step up your Treatments                                                                                               It is hard to avoid sick people if you work in an office or in a job that exposes you to the public so it is important to make sure you are doing your daily CF treatments.  In a perfect world, everyone with CF would do all the breathing treatments prescribed each day without missing any doses.  In reality, things get in the way.  Most people with CF tell me they normally skip a lot of treatments each week.  During winter it is important to reduce the number of missed treatments.  Medicine cannot work if it stays in the bottle.   People with CF often say “I do not have time to do my treatments”.  I think the opposite, I do not have time to get sick so I must make time to do my treatments.  If you are working in an office or going to school it is hard to avoid people who are sick but taking good care of yourself can reduce the chance of catching a winter bug.  Also, make sure you go for quarterly CF Care Center visits so that your CF Care team can monitor your health.

To make treatment time more enjoyable find something you really like to do and do it during treatment time.  If possible make that the main time you do the activity.  For example, if you like watching movies or playing video games make treatment time the time you watch movies or play games.  It takes discipline but can really help decrease missed treatments. Listening to music while doing treatments also helps to reduce the noise of the machines and can make treatment time relaxing.  Some people meditate while doing treatments and report it has a calming effect.

5. Avoid Crowds/ Avoid Sick Visitors                                                                             In the late 1990’s I was on and off IV’s many times due to illness.  I realized that often I finished a round of IV’s and would then go to a party or a big meeting and would be sick within 3 days.  When I started restricting my contact with sick people during winter and beyond my own incidence of illness decreased.  My close friends know they should cancel a lunch date with me if they think they may be sick or someone in their house is sick.  I still go out to lunch with friends but in winter I avoid big gatherings. For example, if my daughter’s school is having a meeting of parents I make sure I sit toward the front or back (depending on the room) on the side and not in the middle of the group.  But if I know the meeting will be in a small room with the potential of having a lot of people in attendance I send my husband to the meeting and stay home.

6. Exercise at Home                                                                                                           For me, going to a public gym or exercise class during winter makes me nervous.  I used to attend a yoga class that I enjoyed.  During the winter months half the class was sneezing and coughing and I decided that was not a good place for me to be exercising.  The same thing happened at a local gym.  Now I use yoga videos and step up the number of times I walk my dog.  I know in some places it is too cold to walk outside.  If you have to go to an indoor gym try to go at an off time.

7. Shop at Off Times                                                                                                      Once winter starts I become very disciplined about when I shop.  I love a certain grocery store in Houston that has beautiful food but it can be mobbed on the weekend and at lunchtime.  The other day I drove to the grocery store at 11 am but saw the parking lot was full.  I was tempted to just “run in” because I had driven there and needed a few things.  But I turned the car around and headed home.  I find that when the store first opens at 8 am there are very few shoppers so that is the best time for me to go.  If you work or go to school and this is not possible see if someone else can get things for you.   Some stores now have a way for you to order things online and then pick up the bagged items at the store. This fairly new service can be very helpful to people with CF.

8. No Airplane Travel                                                                                                         In the late 1990’s I was still traveling in winter. I would finish a course of IV’s and feel good and then a week later I would board an airplane and head to a work meeting, wedding or family event.  Within 3 days of returning from the trip, I would be sick and back on IV’s.  After 3 winters of this cycle of IV’s, travel and getting sick again I realized there was a direct correlation between my travel and getting sick.

My solution was to impose winter travel restrictions.  I do not fly on an airplane in January and February unless I need to travel for medical care.  This year I think I will extend my rule to mid- March given the widespread flu activity and what looks like extended cold weather in many places.  I have been restricting airplane travel since 2000 and have seen great results in terms of my health.  Also by having an absolute rule, no one feels slighted if I miss their wedding or event.  I do wear an N-95 mask when I fly on a plane in other months.  However, I found when I traveled in winter when I got to my destination (especially if the place had cold weather) I still got sick because I came into contact with a lot of sick people.

I travel a lot the rest of the year so having 2 months at home is a treat.  I just cleaned out 28 years of boxes that have accumulated in my attic.  February my goal is to clean and organize my closets.  In Houston where so many lost everything in Hurricane Harvey, it feels good to send things I do not use to those who need help.

9. Rest                                                                                                                                         I have come to the conclusion based on conversions with thousands of people with CF that people with CF do not enough sleep.  For those who work or go to school, there is always a shortage of time as a person tries to do breathing treatments in the morning and night and fit in work and school (or the other way around).  Those who are not attending work or school may find they have interrupted sleep due to coughing, low blood sugar or other health issues which results in exhaustion in the morning.  A decline in health also brings with it the need for more sleep. Sleep is extremely important and helps your body fight off viruses, the flu, and other bugs.  While it seems rare for most CF physicians to talk about the need for sleep it is very important and can really improve health and reduce the chance of getting sick.

10. Stay Connected                                                                                                               In Joe Kowalski’s day there was no Internet, Facebook or Twitter.  Talking on the phone was the way he stayed connected to friends and family during winter.  I make plans to speak to friends or to meet them for coffee or lunch when they feel well.  I also like to plan fun things to do in the spring and summer while I am in my winter cocoon.  I may have to pass up going to a party or an event in winter but I have found the reward of not being sick is worth it.  I look forward to reading of the strategies CF Roundtable Readers use to avoid winter bugs.

 

 

 

Introduction: Miracle Flights: free medically-related air travel for ill patients, including CF

Miracle Flights recently reached out to tell us about their wonderful organization and explain the details of their service, which we have compiled into a blog article to share on our website with our CF community. Continue reading Introduction: Miracle Flights: free medically-related air travel for ill patients, including CF

Travel Exercise By Jeanie Hanley

During a recent trip to visit my aunt in Florida this spring, I was faced with a bit of a dilemma – where to exercise. With a CF exacerbation threatening to emerge, I couldn’t slack off. All I really wanted was to breathe in fresh air with as vigorous a walk as I could muster and maybe even take in some local sights. Continue reading Travel Exercise By Jeanie Hanley

CF Wind Sprint 53: Keeping your nasal passages clear with Nozin

After receiving a Facebook message asking about how he keeps his nasal passageways clear and germ-free, Jerry took to his Wind Sprint page to share his response.

As a part of his daily hygiene, Jerry uses Nozin, a nasal sanitizer, to kill the Continue reading CF Wind Sprint 53: Keeping your nasal passages clear with Nozin

CF Podcast 153: CF, Living in Two Worlds, the Healthy and the Sick with Jen Eisenmann

Today we meet Jen Eisenmann, a 44-year-old living, breathing, and succeeding with cystic fibrosis. Diagnosed at 12 months old, Jen grew up similarly to most other kids, other than having to take enzymes and do occasional chest Continue reading CF Podcast 153: CF, Living in Two Worlds, the Healthy and the Sick with Jen Eisenmann

Flight Travel and Tips–Guest Blog by Meranda Sue Honaker

Preparing to travel with cystic fibrosis requires attention to detail and being prepared for the unexpected. Within the last year I have decided to travel by air – a new and exciting experience for me! I have created a “master” flight check Continue reading Flight Travel and Tips–Guest Blog by Meranda Sue Honaker

Gunnar Esiason, Own It: Don’t Say That to Me

This blog post touches on the invisible disease side of things. I know I went pretty deeply into that with my little story about almost getting tased on an airplane ride from Boston to New York, but this is a little bit of a different Continue reading Gunnar Esiason, Own It: Don’t Say That to Me

Tips for CF Vacation by Gunnar Esiason

After a seemingly endless winter here in New York, a few of my friends and I decided it was time to get away. Check out my buddy Dave in the picture above! We buried him (when I say we, I mean my other friend Joe did while I sat there reading a killer book because I have more

To conitunue reading go to link: http://gunnaresiason.com/