Wednesday, July 31, 2013

Faces of PH: Jane and Nicole

“I try to stay positive if for no other reason than for my daughter. I will always be here for my daughter and will do anything that I can for her.”

--Jane Northrop

Read Jane and Nicole’s story

Monday, July 29, 2013

PH International Leader’s Corner

 Are you a leader of a PH association? Don’t forget about the resources available to you in the PH International Leader’s Corner. For those interested in starting an association, use the experience of other leaders around the globe with the section “Building an Effective PH Association” on the left-hand tab.

For more information, contact

Sunday, July 28, 2013

RAGBRAI Day 7: The Finish Line

From Kathy Morton, who just finished a 7 day biking trek across Iowa:

"Taking a smoothie break in Keosauqua, Iowa. Bikers can be seen crossing the bridge (right)"

"We did it! We rode across the State of Iowa and now this particular adventure is over. While I wish that I could say the same about my journey with pulmonary hypertension, that will have to wait until they find a cure. While I wait I plan to keep myself busy. School starts in less than a month and let me just say that every school year is an adventure all its own.

What comes next? Maybe a trip to Japan or a bike ride visiting wineries in Spain. No one really know what our future holds. What matters is that we take advantage of opportunities, live life to the fullest and don't say 'maybe next year.'

Have a dream and then set goals to make that dream come true. I did and you can too."

Congrats, Kathy! Great job! (Kathy is center below at the finish line.)

Self-Management: Take Control of Your Illness

Having pulmonary hypertension may seem overwhelming, but choosing self-management can help you better control your life.

Self-management allows you to take control of your life because nobody understands your illness better than you and by partnering with your doctor allows you will be able to choose the best medical plan for you.

PHA provides tools that help patients with self-management.

 Learn more 

Saturday, July 27, 2013

Support Pulmonary Hypertension Research

Why support pulmonary hypertension research? Because we are a small community and your contribution truly counts in our search for a cure.

Your donation is an investment in one of PHA’s 5 cutting-edge research programs that will bring us closer to a cure. PHA leverages the donations from members of the PH community like you by partnering with renowned research organizations like the National Heart Lung and Blood Institute (NHLBI), a branch of NIH.

RAGBRAI Day 6: Only with the Help of Our Support Team

"Day 6 of RAGBRAI has come to an end. Today was a near perfect day, with flat roads, cooler temps and tail winds. RAGBRAI is a journey that requires the assistance of others, similar to pulmonary hypertension. I can't begin to list all the people who are involved with RAGBRAI, from the planning stage, to the towns, to family members and coworkers.

With PH we also have teams of healthcare workers, family and friends among others who help us. A great custom on RAGBRAI is to shout out "thank you" to each and every law enforcement officer who is directing traffic for us as we pass by. We need to remember to thank our PH support staff as well."

From Kathy Morton, who is biking across Iowa in 7 days

Friday, July 26, 2013

RAGBRAI Day 5: Don't Let Your Demons Get You Down

"Today's ride was from Knoxville to Oskaloosa, Iowa. The hills were not as bad today, but it was hotter and a bit more windy. The hardest part of the day was just getting out of bed. Mentally I was exhausted and ready to go home. However, I made myself go on and I had a great time. Don't let mental demons get you down!"

From Kathy Morton, who is biking across Iowa in 7 days

It’s Your Last Chance

Submit your artwork before it’s too late! PHA’s Art from the Heart design contest ends July 31, 2013. Don’t wait! Send in your artwork now

Last Chance to Share Your Pet Coping Story

Coping with pulmonary hypertension is different for everyone. Some patients use their pets as coping mechanisms. Do you have a pet that helps you cope?

It’s your last chance to share your story of how a pet has helped you cope with having pulmonary hypertension. The last day to share your story and photo is July 31, 2013. Share today 

Wednesday, July 24, 2013

RAGBRAI: Day 4 : Iowa is not flat

Iowa is not flat- shares Kathy - living with PH, riding across Iowa
Today we biked from Des Moines to Knoxville, Ia. There were long and steep roller coaster hills the entire day. Combine that with heat and a head wind and it was often more challenging than day two. We decided not to push ourselves and choose to walk up several hills. What is important is that we did not give up and we still made it to the top and kept on going rather than calling for a ride to pick us up. This can be applied too our battle with PH. Don't quit life. Keep fighting. If you need to stop and catch your breath it's ok. You don't have to prove anything to the world. All that matters is that you know you are doing your best.

Question of the Week

Pulmonary Hypertension Research and Diagnosis Act

Thank you to Representatives Kevin Brady and Lois Capps for introducing the Pulmonary Hypertension Research and Diagnosis Act earlier this year! This bill will benefit the entire PH community by improving diagnosis and treatments.

Find out more about the bill and help it move forward in Congress


Today we rode from Perry, Iowa to Des Moines. The ride today was fairly flat with only a couple long hills. The temperature was in the low 80's so it felt chilly as we rode. The strong head wind made the ride difficult at times, but we just down shifted and kept on peddling. Many of you may be wondering how I am able to ride if I have PH. My answer to that is that I was fortunate to have been diagnosed early, before I began really having symptoms. My doctor has been able to keep me stable. This allows me to continue to live a relatively normal life. Another question you may be having is do I have to make any accommodations to ride. Yes. I have stopped my lasix for the week. I sweat enough that I don't need it. Otherwise, I just do the same thing as the other riders. I drink lots and lots of water and stop to cool down if it gets too hot. If I get tired on a hill I stop and rest for a moment before continuing. Yesterday, many veteran riders were dropping from heat stroke because they were not playing it safe. I know my limitations and am careful to not over do it. That's it for today. Time for dinner and then off too the evening festivities.

Tuesday, July 23, 2013

RAGBRAI Day 2: Kathy's uphill climb

the uphill climb
Day 2: from Kathy Morton, living with PH and riding in RAGBRAI: Today was a day full of ups and downs. Just like PH, sometimes what appears to be really big hills don't turn out to be that bad. Other times, hills that appeared small turned into the biggest obstacles. Rather than looking far ahead and trying to see the entire hill - which can be terrifying and play mind games with you it is easier to just look right in front of you. Even if you are on a steep hill, when you look right in front of the road appears to be flat. The same can be said of PH. Rather than looking into the future and becoming frustrated, sometimes it is easier to just take things day by day. Today we rode from Harlin, Iowa to Perry, Iowa, rode  82.5 miles with 4239 feet of climb.

view from the top!

PH Ready Caregivers first Live Webinar is July 24

PHA’s new self-study curriculum for caregivers ,PH Ready Caregivers, is almost here! Caregivers will learn valuable information about caregiving, emergencies, self-care, coping and much more. The curriculum can be started anytime and begins with the live webinar “PH Caregiving 101” on July 24th that will focus on what “caregiving” means and how to be an effective caregiver. Register today

Monday, July 22, 2013

Recognize Pulmonary Hypertension Symptoms

Learn more about symptoms of pulmonary hypertension

6th Annual Swing 4 the Cure - Wojo PH Golf Classic

Get ready to SWING 4 THE CURE at the Wojo PH Golf Classic at the Aliso Viejo Country Club in Aliso Viejo, CA Monday, July 29! Registration starts at 9 a.m.! Learn more and register today

Kathy Morton- living with PH, biking across Iowa in 7 days

from Left: Arek Wdowiak,  Michelle Eggert,  & Kathy Morton (living w/ PH)

“I work full time as a high school teacher, exercise regularly, and experience a virtually symptom-free life. Early diagnosis has allowed me to call the shots in my life, rather than PH.” --Kathy Morton (living with PH)

Kathy is calling a big shot this week in her life. She will be participating in the Register’s Annual Great Bicycle Ride Across Iowa  (RAGBRAI), a 7 day bike ride across the state of Iowa. RAGBRAI is the oldest, largest and longest bicycle touring event in the world. The ride typically covers over 460 miles.

Kathy will be sharing her story with us each day as she rides this week.  She has shared her first picture from her epic journey- dipping her wheels into the Missouri River.  

"This trip will be a journey, much like PH," she shares. "It won't always be easy, but I expect to learn a lot about myself and (that) I meet some great people along the way." 

Kathy shares her story of Day 1, July 21st: A 52 mile ride from Council Bluffs, Ia to Harlan, Ia. Around 12000 people were expected to ride today, last I heard. RAGBRAI is more than just the riders, just as the PH community is more than just patients. There are thousands of volunteers and across I people go out of their way to help the riders. For example, one family allowed riders to jump in their swimming pool a they passed by, while another opened up their home and allowed strangers to enter and use a real restroom, allowing us to avoid the dreaded port-a-potty.

This same spirit of helping others exists in the PH community. Patients, caregivers and friends can be found on message boards, Facebook pages and newsgroups. These people are always going out of their way to help others, whether is by hosting a chat, posting articles on current research, and just being their with a word of encouragement. These are only a few ways the PH community comes together. I lived in Iowa until I went to college, but I will always be proud to call myself an Iowan and I am delighted.

Sunday, July 21, 2013

Taking Charge of Your Health

It’s your life, so take as much control as you can. By taking charge of your physical health you can help cope with the stress of having pulmonary hypertension.

Try to learn as much as you can about your condition and medications as the medical professionals you work with. Become an expert on your own pulmonary hypertension.

Learn more 

Saturday, July 20, 2013

Time is Winding Down

You only have 11 days left to enter PHA’s Art from the Heart Design contest. We are still accepting artwork. Learn more and enter

Friday, July 19, 2013

People Stylewatch Magazine to Donate Portion of Proceeds to PHA

Be at the height of fashion while you support PHA. This month’s People Stylewatch magazine features a shiny gold “mirror” tote bag whose manufacturer, Galian, will donate a portion of proceeds to PHA on bags ordered at Galian by Aug. 16.

Get a discount on the bag by typing in PEOPLESTYLE20 at online checkout.

Debbie Castro of PHA took advantage of this offer early, and she looks faaab-u-lous!

A big thank you to PHA’s friend Jaclyne Franciscone of La Rue PR for placing this in the media!

Learn About Financial Assistance Programs

Learn more about available financial assistance programs

Thursday, July 18, 2013

Talk to Someone Who Gets It

Patients: Do you ever feel like you need to talk to someone who knows what you’re going through? By joining PHA’s monthly patient call support group facilitated by fellow patient Carol Bowling you can!

You can use this telephone support group to share your story, learn from other patients, provide hope and inspiration, or just to listen. Connect with other PH patients on July 25, 2013, at 8:00 p.m. ET/5:00 p.m. PT by calling in toll-free.

Register now

Throwback Thursday: 2008 PHA International PH Conference Video

For #ThrowbackThursday PHA is looking back at the 2008 8th International PH Conference from June 2008 in Houston, Texas.  Remember and view highlights, events and stories from the 2008 Conference.

PHA's International PH Conference and Scientific Sessions is the largest pulmonary hypertension meeting in the world.

PHA’s next International PH Conference will be held on June 20-22, 2014. Registration opens in January 2014.  The conference will be held at JW Marriott Indianapolis.

Learn more and stay up-to-date

Monday, July 15, 2013

LIVE: Biannual Newly Diagnosed Webinar to be held on July 30

Newly Diagnosed? What You Need to Know
Tuesday, July 30, 2013
2:00 PM EST
Presenter: Jean Elwing, MD

If you or someone you know was recently diagnosed with pulmonary hypertension, please join us for a webinar especially designed for newly diagnosed patients. Jean Elwing, MD of the University of Cincinnati will review the basics of what every pulmonary hypertension patient should know about PH, its treatment and coping with this disease.