LSUHSC-New Orleans Pulmonary Clinical Research

11/07/2020

11/07/2020

Don’t miss the PAH Today National Broadcast, a series of events for patients with .

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Brought to you by the PAH Initiative and sponsored by United Therapeutics.

11/06/2020

Day 5 of 30 Days of PH
Topic: I Will Not Let PH Win

This is ’s story: Hello, my name is Daniel York. I was diagnosed with Pulmonary Hypertension in 2007. It wasn’t until 2010 that I found out that my youngest half-brother was diagnosed with PH as well. He died in 2012 at age 24 while waiting for a lung transplant. Then in 2014 my other half-brother was showing symptoms and on the same day he was diagnosed with severe PH, died at the age of 39. What I have is Heritable PAH (HPAH is linked to genes that are inherited from family members). We know it came from my dad’s side of the Poole family line. My daughter also has the PAH gene.
What I want to focus on is not the disease but what I have learned from it. I told myself I would not let PH win. I started to work out slowly every couple of days and now I’m working out every day. I am trying to keep active. I have been through many struggles and ended up on subcutaneous Remodulin. That was life changing but I refuse to give up! Through all the pain I will keep strong for myself and my daughter.
I find inspiration from all the PH Warriors on the PH Support Group. We share our stories, battles, and wins and this helps us to find the light among so much darkness. My PH Warrior Queen Jessica who is also my best friend and my love, not only shares the same disease but the same birthday. She inspires me all the time and brings laughter into my life. My daughter reminds me that I am a great father as well. She is my princess and brings so much joy and awesomeness into my life. Not only for myself but for them I will remain strong and fight to win against this disease. In the meantime, each day is a new day for hope and inspiration from all those I come in contact with. I rejoice each morning for another day to share my life with those I love and care for.

11/04/2020

Day 3 of 30 Days of PH
Topic: Life Lessons From Charlie Brown

This is ’s story: Charles M. Schulz, the creator of the Peanuts comic strip, penned this conversation between Linus and Charlie Brown.

Linus: Nothing goes on forever. All good things must come to an end…
Charlie Brown: When do the good things start?

It’s odd to get wisdom from a children’s comic, but Charlie Brown’s response may be stranger still. Like his eternal optimism that Lucy will allow him to kick the football, Charlie Brown is looking forward to the good times to come.

Whether you’re a pessimist or an optimist, I’m sure you can see that Linus and Charlie Brown both have valid viewpoints. When my oldest son, Cullen, was 8 years old, his doctors diagnosed him with a life-threatening condition called Pulmonary Hypertension (PH). In a flash, the healthy, carefree good times we had experienced prior to his diagnosis had come to an end.

Since his diagnosis, we tried to remain optimistic. Our hopes and love for our child was the only thing that got us through the countless trips to the hospital, doctor appointments, prescription changes, surgeries, and other hardships that had become our life. We met many other PHamilies living with the same challenges, and together, we cherished successes and mourned any setbacks. Sadly, we lost too many of these PHamily members when the disease took them.

Cullen received a heart and double lung transplant when he was 14. We never forget the donor’s life-saving sacrifice, or the pain of loss felt by his family. Although Cullen no longer has PH complications to deal with, living post-transplant is no walk in the park. His suppressed immune system makes him susceptible to illness and rejection is a constant threat. He's likely to need another transplant when/if his new organs fail.

Our experiences have taught us to treasure the moments we have together. Look for and celebrate even the small victories and remember that there are more good things to come. As Victor Hugo said, “Even the darkest night will end and the sun will rise.”

Finally, and perhaps most importantly, don’t be afraid to say “I love you”.

11/04/2020

Day 4 of 30 Days of PH
Topic: Staying Positive With PH

This is ’s story: I was diagnosed with Pulmonary Hypertension in May 2009. I was prescribed two oral medications but as the months passed, I got increasingly tired and short of breath. By June 2010, I moved from Los Angeles back to my native Cleveland, Ohio because I couldn’t live without help. I was quite fearful of the unknown, being debilitated and having to rely on others for basic activities.
My new pulmonologist promptly ordered tests. One week later, I went from having a right heart catheterization to being wheeled into the ICU for heart failure. I needed a Remodulin pump as soon as possible. It sounded horrible and I swore I would never do it. When I declined my doctor told me I would not live more than two weeks without it. When he wouldn’t release me from the hospital my family guilted me into getting the pump.

The first six months were horrible; I was in pain, sick and miserable. I was hating life and feeling sorry for myself. Facebook was filled with friends doing all sorts of activities like running marathons and climbing Mount Everest. One day I stopped myself and said “Kathleen, you never ran marathons when you were healthy, you are just looking to feel sorry for yourself.”

This was my “ah-ha” moment. It helped change my outlook on life. I decided not to be a victim and started looking at life in terms of what I could do instead of what I couldn’t. I didn’t want anyone’s pity or to be viewed as “the sick girl.”
I kept waiting for life to be okay, but I learned it was already okay, I just needed to practice radical acceptance of “What Is!”

I have a tattoo of my motto: “Be happy, joyous and free.” Exercising mental strength and a positive attitude gets me through each day no matter how I am feeling. I have my “Why me” moments, but then I think, “why not me?”

You can have a chronic disease and live a productive, meaningful life. I should be dead. My doctor is constantly amazed at how well I am doing. I told him my secret is to never let sickness rule my world. I have a disease. Big deal, everyone has something.

10/24/2020

Often, when our loved one or we are diagnosed with PH, we are misinformed by uneducated doctors. I know that for me, I was told that " PH was a death sentence." I know others who have been told similar. This was back in 2005. I quickly educated myself and am thankful that I have been blessed...

05/17/2020

It’s not hard to see why Barbara Thompson is known as the Zebra Lady. She wears zebra-print clothing, hands out zebra cards to explain pulmonary hypertension and now makes zebra-striped masks. Read how this PHA support group leader continues to raise PH awareness during the crisis: http://ow.ly/DO4I50zHGtu

05/17/2020

Many pulmonary rehabilitation (PR) programs worldwide may have closed temporarily due to COVID-19. This fact sheet offers some ways to continue your PR at home when you are not able to get to your program:https://www.thoracic.org/patients/patient-resources/resources/pulmonary-rehab-when-unavailable.pdf

02/17/2020

The heart has two sides that send blood to two places—the lungs and the body. When your caregiver uses a blood pressure cuff on your arm, s/he is measuring the pressure of arterial blood in your body. Blood pressure is always measured at two points: when the heart beats (systole) and when the hear...