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 

9 Fun Ways You Can Look After Your Emotional Health

Learning that you have pulmonary hypertension (PH) or another life altering disease can bring on many emotions.  Everyone affected will experience different emotions throughout their journey and cope with their diagnosis in their own way.  Each person will learn what makes them happy and develop ways to make the best of life and stay emotionally well.

What do you do on a daily basis to help your emotional health? The PH community has spoken out and want to share their experiences with you. If you feel you are having trouble coping with a chronic illness, maintaining your emotional wellness or just want to see what others are doing to stay well, check out the information below. These nine fun tips are sure to brighten your life.

1)  Stay in touch with family and friends.

Having positive relationships with the ones you love is an essential part of staying emotionally well. These people are your first line of support. Make sure to participate in family activities and friendly get together’s when you feel up to it.  Even a simple phone call can make your day so much better. According to Teresa McMillian, “Sometimes it is wonderful to just spend some time on the phone with a friend just chatting about nothing.”

2)  Surround yourself with support by connecting online.

In today’s world, there are many ways to connect with people going through experiences similar to you.

Attending a local support group meeting can help you meet a network of people and help you realize you are not alone. With busy lives, it may be hard to attend all of these support group meetings. Luckily, with modern day technology, we have the ability to receive support from many different channels directly from home. There are many ways to connect online. Community created Facebook groups are one popular way to connect online and are helpful to many people. These groups give people the ability to receive support almost instantly by connecting with people from all over the country and world who are going through similar experiences. People in these groups become close friends and are always there for each other. With such strong support opportunities available, no one should ever feel that they are alone in their journey. Join one of these groups today to meet your new friends! 

3) Make time for a pet in your life.

The health benefits of being with and around pets are substantial. Pets provide us with companionship and comfort when we need it the most.  People in the PH community love their pets! Pets are there for companionship when no one else is around and bring happiness when things aren’t going well.  Alice Jones-Jaehne says that her Maltese/Poodle has been great for her husband and herself and helps her PH. Alice says, “I walk him daily whether I feel like it or not because he needs it.” Pets not only bring happiness, they promote physical activity. If you can’t adopt a pet, find someone who has one and arrange a play date! Pets are sure to make you smile when you need it the most. 

Do you have a story about how your pet has helped you cope with PH? Visit PHA's website today to share your story and a picture of your pet to show how important your pet is to you!

4) Take time for yourself. 

Although family and friends are important, make sure you are getting enough time to yourself.  Sometimes your mind needs a time out and being alone is the best way to relax.

Stillness practices are something that can be done when you are alone. According to the Center for Contemplative Mind in Society, stillness practices are one way to encourage contemplation and spiritual healing. Stillness practices include things such as meditation and sitting in silence. These practices can quiet the mind and make it easier to take every moment as it comes.  Many people in the PH community say that meditation helps them get through the day. Learn more about the benefits of meditation to see it if is something that can help you.

5) Express your feelings and relieve stress through creativity.

Sometimes you may be feeling so many emotions and not know how to express them all. Creative expression can allow you to express feelings openly and freely.  

Haley Lynn is an artist who uses creative expression to express her feelings.  The beautiful art you are looking at are just some examples of Haley’s work. She shared her feelings about emotional wellness and what art does for her.

“Emotional wellness with any disease is so important because it’s the most ignored. Emotional pain isn't something you can just pop a pill for like we do with our bodies...it requires a lot more work. It needs to be taken care of just like our physical bodies. I've been an artist my whole life, whether its sketching, painting or writing. I don't really know why I do what I do, but it's more like something I HAVE to do to keep going. It's a release of energy. When it comes to my disease it's this area where I'll always feel comfortable...expressing current feelings, raising awareness and communicating. It's just me.”

Creative expression is a great coping tool. Other forms of creative expression include journaling, writing, photography, scrapbooking and crafting. Remember, there is no right or wrong way to be creative.  Just be creative in ways that allow you to express yourself, relieve stress and relax.

7) Be active if you can.

Everyone stays active in their own way. How do people in the PH community stay active?

Debra Webster does yoga with the help of a yoga instructor. Debra says, “Still being active keeps me going- I know I am lucky to be able to do that. I have a daily yoga practice that with the help of my yoga instructor I maintain a log and we track my progress. I really look forward to that 30 minutes in the early morning to get me going and set for the rest of the day.” See what a PH specialist had to say about alternative forms of exercise like yoga.

Patty Sandoval Sralla does pulmonary rehab. According to Patty, “Pulmonary rehab twice a week makes a big difference.” Although staying active benefits some people, it is not for everyone. Check out PHA’s website and talk to your doctor to learn more about PH and exercise. 

7) Enjoy the benefits of parks and recreation.

Chances are you have a park somewhere near you! Parks and recreation benefits the community by promoting health and wellness. America has celebrated July as “July is Parks and Recreation Month” since 1985. “July is Parks and Recreation Month” provides the opportunity to bring awareness to and spread the message about how important parks and recreation are.  The National Recreation and Park Association (NRPA) offers a wide range of programs and services. 

Parks and recreation is for everyone, including you! Parks and recreation departments are going above and beyond to make events and activities accessible to everyone. Measures are taken to make sure your diagnosis does not stop you from enjoying the benefits of parks and recreation. Aside from making facilities accessible to everyone, recreation opportunities are available for people of all abilities. Not all parks and activities are active. Passive activities include exposure to natural surroundings, museums, environmental education programs and much more.  Many communities have passive parks or plans to develop them in the near future. Passive parks provide the opportunity for activities such as relaxation, sightseeing, picnicking, etc. Many passive parks include art, sculptures, flowers and other things to ensure a beautiful environment.  There are tons of events and activities taking place this month in honor of parks and recreation month. 

8) Take the time to laugh.

Laughing is one of the most important things you can do. Make sure to laugh at yourself when you need to! On the topic of laughter, July is National Tickle Month. Who knew that tickling is an important part of staying well? Check out these fun facts about tickling .

9) Last, but certainly not least…Enjoy the little things in life

Sometimes, it’s the little things in life that bring us our greatest joy.  When things get tough, remember to enjoy the little things that life brings us. Beautifully put:

By Laura Johns, Patient & Caregiver Services Intern 

Going from Miles to Inches

It’s that last mile of the race – you feel your mouth getting drier and your breath getting heavier. You see the track getting smaller and your surroundings start to blur. Your legs have grown weak from the previous miles, and it seems like asking them to push through just one more is preposterous. Suddenly, you hear claps and cheers and chants. The blurred sidelines crowded with people start to come into focus in your peripheral, and you feel their encouragement rush through you. More claps, more cheers, more chants, and those spectators with cups of water in their hands stretched out, your dry-mouth is instantly cured. Gulping down the refreshing water as well as the crowds’ support, that last mile turns into a couple of inches. Your legs burst with energy, your lungs get a second wind, and your body is rid of defeat. Thousands of claps, thousands of cheers, and thousands of chants. You collapse at the finish, panting with a smile on.

Defeat is really only a state of mind, and your strength can build, crushing all negative thoughts with the encouragement and support of others. 

Receiving news about your life-changing diagnosis, a chronic disease with no cure like pulmonary hypertension, can trigger feelings of sadness and despair. Many challenges are faced while you’re figuring out how you’re going to live with these new limitations, ones that you may not have ever thought you would have to experience in your day-to-day life. It’s these challenges that can really start to weigh on a patient and make it seem as if their surroundings are blurring, their passions might be getting pushed aside, and their dreams may start to lose their focus, even slipping past their peripheral sight. 

Regaining the strength to reignite a thirst for life is heavily contributed to by community. Patients don’t have to crawl and climb alone, specifically those who are living with pulmonary hypertension, as there are organizations, just like Pulmonary Hypertension Association (PHA), that offer a multitude of resources. Support groups engage in conversation with those who may be experiencing the same challenges, but most importantly the same successes. Seeking out local specialists also provides security and comfort. Receiving care from doctors whose careers are dedicated to your specific needs can greatly improve the journey of finding the right treatments that work specifically for you.
 
Another facet that provides a more tangible support are products and tools that cater to a patient’s limitations. PoppyPocket, a product I created for my father who was diagnosed with colorectal cancer, offered him an alternative to the bulky fanny-pack that carried his transfusion pump delivering his medication. Since PoppyPocket allowed him to discreetly wear his pump underneath his clothes, he was able to sleep comfortably, without worry, and he was able to regain freedom in his mobility. All aspects of community, organizations, doctors, clinics, support groups, events, products, tools, etc. infuse freedom into every patient’s life. 

For those who are living with any illness, all of these resources are your glasses of water. All these resources are there on the sidelines of your fight clapping, cheering, and chanting. You aren’t alone; your miles of challenges and struggles will feel like inches, with the support of your community. 

Live boldly,

Julie at PoppyPocket. 

http://poppypocket.net/

http://poppypocket.wordpress.com/

https://www.facebook.com/PoppyPocketLLC?fref=ts

Photo credit:

Runners: http://www.flickr.com/photos/48932289@N03/4555346592/sizes/l/in/photostream/