Summertime Survival!

Bright sunshine.

Hot days.

Warm nights.

Humidity.

Pool time, air conditioning!!

It's summertime around the United States, which means a whole other way of surviving everyday life due to the weather outside. Much like dealing with the winter weather, many PHers need to take precautions and make adjustments to make sure they can get through the summer months with no problems. Once again I have asked fellow phriends (friends with PH!) to provide some survival tips for the summer. Here are their ideas! Many thanks to everyone who participated in this blog post!!

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*Kevin B: Well anything I could offer would be obvious...like getting up early to get my yard work done or waiting until late evening etc...living in A/C and going from A/C to A/C lol although it's pretty nice down here in Terre Haute right now.

*Jen C: On the Texas Gulf Coast, I stay in the AC most of the summer, try to do errands early if I can, and take frequent AC breaks if I am out for any period of time! Cool pool helps me cool off when I can and drinking cold liquids! Also dress light lol

*Pat F: I want to continue walking as I did in pulm. rehab. I can do it on a treadmill...but I really like to walk for 30 minutes or so walking around Wegmans or Target. Both stores are clean, air conditioned..FLAT! I stop when I need to, pick up anything I need, or nothing at all. They both have clean restrooms. LOL (for those on diuretics) I can go to Kohls, but their carts are terrible, aisles are narrow...but it is clean and friendly.

*Anna A: Stay hydrated, I know we are limited on liquids, but we still have to make sure we don't pass out from the heat. We all keep our meds with us when we leave or we should and they should be kept in a cool spot, I like to have a mini ice chest in my car. Try to stay in shady areas, we can't be in the sun too long because of the type of medications we are on. If we are going for a walk, tell someone, just in case you don't make it back. Try not to talk and walk, we could lose our breath and pass out.

*Tiffany G: A/C and plenty of ice water.

*Guy M: Beer and some shade (I like how Guy thinks! lol)

*Alex F: Carry water with you wherever you go. Don't over exert in humidity, knocks me down for days! Go inside when too hot. Look at weather report. If it's bad for eldery or allergy sufferers, it's bad for us too.

*Vernon G: When it's too hot I stay in the AC.

*Patty F: South Jersey here...wear loose clothing and if you use liquid oxygen, take an extra tank to allow for evaporation in the humidity.

*Catalina L: I'm out and about a lot on buses and that means waiting at bus stops on HOT days. I take umbrella, frozen water bottle, the cooling rag that my PHriend Bonnie sent me, sunglasses. And in between I will go into cool A/C stores just to look around until I cool off. Then I come home and take everything off and relax in my own A/C cool home.

*Lisa T: As everyone else said, to keep hydrated. I know myself being on water pills I can get dehydrated easily. Also to keep cool. Not to eat anything heavy.

*Janet P: I love being outside...and I don't have anyone who needs me at home, nor much to do during the day other than housework. So I can be out in the heat and recover when my body gets too hot. I hydrate, use the AC when it gets way too hot or muggy.

*Cathy M: I use ac all the time because of the humidity. Being on the ocean we tend to have high humidity, as in 90%, most of the time.

*Jennifer K: Coming from Florida, summertime means bad storms in the afternoons and the potential for tornadoes and hurricanes. We, as PAH patients, should always be ready in case of emergency but when you add those pesky little natural disasters, we have to be even more diligent! Extra back-up supplies, generators in case you lose power, knowledge of where the closest "special needs" shelter is, phone lists including your Specialty pharmacy number, oxygen company number, etc...Extra cash! AND having a designated spot to meet at if you can't go home, and a previously planned place to stay in case your home is not livable...Anyone else from the coast want to add anything? Oh yeah, homeowners insurance!!

*Susan T: I hate air-conditioning because it freezes me, and I hate humid heat because it zaps me. It's not too bad at my house because I can keep the AC where it is comfortable for me. When I go to other places, though, I have to make sure I have a jacket or sweater for inside. Sometimes I still get too cold and have to go outside in the heat for awhile to get warm and then go back inside. I keep an afghan at my church because it is always too cold for me - summer and winter.

*Evelyn C: Go to the water, beach or pool with the highest sun block. Maintain in the water to refresh your body from the heat. Bring some cookies and cakes with lots of drinks of all kinds.

*Mary W: I get up early and do all my outside work early in the morning or late in the evening.

*Deborah W: Popsicles, ice cream, water (lots of water) and a/c. When it is too hot to go out during the day, I make it a point to sit on the patio in the evenings when it cools off some.

*Pat K: I use flexible ice packs. I take them with me in a small insulated nylon cooler with a bandana and apply to neck when I feel myself becoming overheated. Also in addition to sun block (apply often when you're outside), I take a large golf umbrella for daytime outdoor concerts, picnics, etc.

*Joellen B: Do your running around in the morning or evening to avoid the hottest part of the day. Also ask for help with some stuff that is too hard to do!!

*Regan S: I'm in the Mojave where it's regularly in the hundred and teens in the summer. I like to suck on ice cubes. Since I have to limit my water intake, sucking on ice makes my water allowance last longer! I take cool showers in the middle of the day. I exercise early, like 6am. I have a special car seat cover that holds ice packs to keep the car seat cool while I'm shopping. I carry a small misting bottle and tiny hand held fan in purse. I wear minimal clothing when it's hot and I'm at home. I just have to remember not to answer the door in my underwear...lol I keep a beach umbrella in my car, too.

*Pam M: Stay in the house during the hottest time of the day! A/C, fans, lots of H2O.

*Tammy D: Keep hydrated.

*Kathy B: Stay hydrated. Drink water and avoid caffeinated drinks as they dehydrate the body. Pace yourself in the heat. Don't try to do everything in one day, spread the chores/errands out through the week. Do a check on each other, we do that here anyway, but if you live by phamily, check up with each other. Help each other out. Be careful of aerosol bug spray. It messes up the lungs. Use lotions, no aerosols.

*Lynne C: I love Outshine Fruit Bars...25 calories and 0 sodium. Very refreshing.

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If you have any summer survival tips of your own, please post in the comments below!

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