My Life with PH + Lupus

by Stacey Gausling

I have two children named Lupus and PAH. Lupus is 14 years old and PAH is 7. Lupus tends to be on the quiet side but when she gets upset, she confuses everyone. PAH came into my world with forceful energy. She demanded so much attention that I was wiped out like never before. Her tantrums were so bad in the beginning. She requires a lot of daily care and has her special “buddy” that has to be with her at all times, ever since she turned 2. I have to carry her “buddy” in my purse or a fanny pack 24/7. She also requires a special diet and I can’t run too far without her tugging at me wanting attention.  On top of that, I am trying to be a super mom and working full time. 

Last year, Lupus got tired of all the attention that PAH was getting and decided it was her turn. She threw a major tantrum and accidentally kicked me in the kidneys. Then she got involved with a bad influence named Anemia which got so bad that it did a number on my blood pressure.  I had to take a one week vacation at La Resort Hospital to get over that one! Well, PAH was having none of that. She demanded to have a makeover for her “buddy” which required another one week stay at La Resort.

As a parent of a teen and an adolescent, I am challenged daily with these 2. The level of care is more that I would have ever imagined, but it gets easier with each year. I am looking forward to seeing them in their 20’s and hopefully they will find their own lives and leave the nest. 

PH and Travel: Top Travel Tips

Part 2: Top Travel Tips

People in the PH community often have questions about PH and travel. Although it may take some extra planning, traveling with PH and an associated condition is very possible. Just make sure to talk to your doctor before traveling and check out the resources PHA has about PH and travel on their website.  The following tips from experienced travelers may also be useful to you as you plan for your next vacation.

Flying to Conference Summer 2012

Colleen Schnell flew from Buffalo, New York to Orlando, Florida to attend PHA’s 10th International PH Conference in June of 2012. This was her first time flying and she did not know what to expect. Luckily, she was able to get in contact with some others who travel often to get more information. Colleen had a lot to say about flying with PH and wanted to share her experience and top tips about flying.

Talk to Other PHers Before You Travel – People in the PH community want to help you and answer your questions.  The best advice will come from those with personal experience. If you are planning to travel, talk to someone with experience. There are many PHA resources available to connect you with someone who can talk to you about travel. These resources include PHA Email Mentors, Email Groups and Community Created Facebook Pages for people living with PH.  The PH community is a very valuable resource!

All About Oxygen – Oxygen is a big topic when it comes to PH and flying. PHA has resources for traveling with oxygen on their website. When trying to figure out oxygen, contacting your oxygen company could be a good place to


start. Colleen contacted the company that she uses for oxygen to see what they had to offer. She was able to rent portable oxygen concentrator and even rent extra batteries for an additional cost. She found that doing research before you contact your oxygen company is important.

A handout by the Pulmonary Paper lists all of the different portable oxygen concentrators and basic information about them.  Colleen found this to be useful when learning about what portable oxygen concentrators would be best for her while traveling. Colleen also took her liquid oxygen unit with her and was able to pack that in her luggage. She had to make arrangements for oxygen in Orlando as well. She did this by contacting her oxygen company’s Orlando office. Make sure to talk to your doctor about oxygen before choosing which method you will use.

What to do with Medication –Make sure to pack extra medication when you are traveling away from home. It is better to have too much medication with you than not enough. It is important to have extra in case you end up unexpectedly having to spend more time away from home. Colleen said when she went to conference, she packed way more medication than she needed, just to be safe!

When flying, it is a good idea to put your medication in your carryon bag. Putting your medication in your luggage is not the best idea because luggage can get lost. To make sure you will have your medication with you when you arrive at your destination, keep it with you.

While at the Airport – Airports can be large and require a lot of walking. With most airlines, you can request a wheelchair when you book your ticket. Most airlines will also allow you to board first if you are using a wheelchair to make sure you get a seat close to the front. Calling the airport and airline ahead of time to see what other accommodations they have for you may be beneficial.

Plan, Plan, Plan – Plan as much as you can in advance. Colleen said she made much of her PH related arrangements about a month before traveling.  There are so many things that need to be coordinated before you arrive at the airport. From making arrangements for oxygen to getting notes from your doctors, planning in advance is essential. PHA has template letters for traveling on their website.

Cruising the Caribbean

Along with her trips to Disney, Carol Bowling has been on multiple cruises. This summer, she has plans to go on a Western Caribbean cruise at the end of August. Carol finds that cruising is a great way to travel with PH and wanted to share her experiences and top cruising tips!

A great vacation for PH – Cruising is a great vacation for someone who has PH because your room is traveling with you! According to Carol, “The cruise ship is great because I can meander around the ship and do the various activities but when I am tired I can easily retreat to my cabin and take a nap or a rest on the verandah.  Nothing as relaxing as looking out over beautiful blue ocean water.”

Carol said the best thing about a cruise is that each day you get a schedule that lets you know what is going on around the boat. With PH, there are certain things you need to do throughout the day. With a schedule in advance, Carol was able to plan activities around her medication schedule.

Accommodations on the boat and in port – Most all cruise lines are very accommodating to people who have special needs. Carol uses a scooter and was able to book a handicap accessible room. This room was larger had a wider door to accommodate her scooter.

Cruising with Oxygen – Each cruise line handles oxygen a little differently. Carol brought oxygen tanks with her on the cruise. For the Disney cruise, the tanks were required to be held in the medical facility on board. On Royal Caribbean, she was able to keep the tanks with her in her room. No matter what, each cruise line will provide you with their policies and how they are going to do things and the cruise line will work with you.

The port will also work with you. Contact your oxygen company to see what they have available in the port you are going to. In case your oxygen company is not able to deliver to the port you will be visiting, there are other approved vendors that they will work with. Work with your oxygen company first, if they are not able to assist you, go to another company such as Special Needs at Sea or CareVacations.

Once Again, Remember to Plan – Just like with flying, you must work with the cruise line ahead of time. The cruise line will require you to fill out paperwork and wants the paperwork completed at least thirty days in advance. Also, look into what the airlines, cruise lines, hotels, etc. can offer you to make your trip more enjoyable.

With the proper information and advanced planning, traveling with PH is almost always possible. Don’t let the challenges of PH and traveling stop you from doing the things you want to most!  Remember to always talk to your doctor before traveling.  Also, check out the following resources about PH and traveling on PHA’s website: PAH Traveling Tips Webinar, Ask a PH Specialist and Travel Recommendations for Patients with PAH.

By Laura Johns, Patient and Caregiver Services Intern

PH and Travel: Fun Travel Destinations

Part 1: Fun Travel Destinations
Travel is always a topic of interest in the pulmonary hypertension (PH) community, as having PH or an associated condition may affect one's travel plans. Summer is one of the most popular times for travel and often brings up a lot of PH and travel-related questions. This two-part PH and Travel blog will feature vacation stories and travel tips from people in the PH community. Part 1 is about travel destinations and vacation stories. Here is a look at what Evette and Carol have been up to this year.

Road Trip Summer 2013
Evette is living with PH and scleroderma. In July, Evette took an eight-day road trip with her husband. She started in her hometown in Tennessee and ended at the Scleroderma Conference in Atlanta. Along the way, she visited state parks and other attractions in Florida, Georgia and South Carolina.

During the trip, Evette climbed to the top of the staircase of the Tybee Lighthouse in Georgia, which has 178 steps. Evette demonstrates that having PH or an associated condition should not stop you from your summer plans. She has climbed the lighthouse staircase on Simon Island, which has 129 steps, as well as the St. Augustine lighthouse in Florida, which has 219 steps!

To reach the top of the stairs, Evette took small breaks along the way. There were landings with windows every few flights where she could take a break and get some fresh air. At the top, she observed that other people climbing the lighthouse were just as out of breath as she was!

Evette stresses that before traveling, you should talk to your doctor about your plans. Before her first lighthouse climb, her doctor approved her plans and recommended that she take oxygen with her while climbing, but Evette made it to the top of the lighthouses without having to use oxygen! Evette is excited about her accomplishment and says, “It feels good to do things that you don’t think you can do!” Way to go Evette!

Disney Vacations: An All-Time Favorite

Carol at Disney with her granddaughter, Lexi. 

Carol Bowling is quite the experienced traveler! She has been to Disneyland and Disney World multiple times. Her favorite Disney Park is Epcot, where she can meet cast members from all over the world and sample food from different countries. France is her favorite country in Epcot because of the French accents and delicious baked goods! 

In the park, Carol uses her scooter to get around. She has found Disney as a company to be very helpful and accommodating of her PH-related needs. “Each park has a First Aid Station. I have left oxygen bottles there so that I didn't have to carry them all day. I have left medicine that needed to be refrigerated. The medical staff will even let you take a nap or simply cool down. They have always been very friendly and helpful to me.” You can go to Disney's website to learn more about their accommodations for guests with disabilities.

Carol with her husband, Michael, visiting Disney World.

“My favorite part of traveling is creating the memories with my family. The moments when we are all laughing, being silly and enjoying each other. It is almost like we don't have a care in the world and we are all living in the moment. We are just focused on experiencing an adventure together and creating a lifetime memory.”

If you want to learn more about travel, make sure to check out Part 2 of the PH and Travel blog on PH Plus with valuable information about flying and cruising.

By Laura Johns, Patient & Caregiver Services Intern