Pulmonary Hypertension
I'm thankful to be breathing, on this side of the grass. Whatever comes, comes - Ron Perlman
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Pulmonary Hypertension: No Longer the Kingdom of the Near-Dead
Until recently, patients with pulmonary hypertension (PH) were said to be in “the kingdom of the near-dead.” That describes the years of my mother’s life between her PH diagnosis at 34 and her death at 50. She was frequently in the hospital, and in the years before her death, she depended on oxygen and a wheelchair. Going up a flight of stairs would leave her gasping for breath. But her limitations didn’t stop her from cheering at basketball games and tennis matches, hosting family get-togethers, attending piano recitals and just doing as much as she could while her illness would let her.
As a kid, I didn’t understand the details of her disease, but as I got older, I found out that…
Resources
Thoughts About Life Expectancy and Hope
I’ve previously discussed the moment that a pulmonary hypertension (PH) specialist waltzed into an examination room and slapped an expiration date on my back like a carton of milk. Unfortunately, this day probably will be etched in my mind forever.
I.P.F., Not Aging, Could Be Causing Breathlessness
Dr. King said, “When I started in pulmonology 30 years ago, everyone with this disease died. Now we can say to patients that you’re going to get worse, but at a slower rate, and you’re going to be alive.”
Is There a Viral Cause for Idiopathic Pulmonary Arterial Hypertension?
Although a causal relationship between IPAH and a viral infection has not been established, a relationship is suspected.
What We Learn From Our Patients
As a physician that has cared for PAH patients for much of the past two decades, I am reminded that despite our advances PAH remains a deadly disease.
Pulmonary Hypertension: No Longer the Kingdom of the Near-Dead
Until recently, patients with pulmonary hypertension (PH) were said to be in “the kingdom of the near-dead.” That describes the years of my mother’s life between her PH diagnosis at 34 and her death at 50.
Pulmonary Hypertension News
Pulmonary Hypertension News is a digital news publication dedicated to offering comprehensive daily news coverage of the science, medicine, and human interest stories surrounding the effects of the disease, as well as the effort underway to treat and eventually cure it.
myPHA
myPHA is an online community dedicated to serving you - whether you or someone you care about is dealing with pulmonary hypertension. Consider this site your one-stop-shop for getting the educational resources and community support you need to fight back against PH. There's strength in numbers!
Pulmonary Hypertension Association
Being a member of PHA is your first step to taking action in the fight against PH. Members of PHA are supporting expanded research and education, building awareness of PH and public support, and changing the history of this illness.
Pulmonary Hypertension Association of Canada
The Pulmonary Hypertension Association of Canada (PHA Canada) is a charitable organization established by patients, caregivers, parents and family members (collectively referred to as “Canadians living with PH”) to end isolation, provide education and create a united Canadian PH community.
Pulmonary Hypertension Association UK
The Pulmonary Hypertension Association (PHA UK) is the only charity in the UK especially for people with pulmonary hypertension (PH). We are committed to helping improve the lives of people with PH, and supporting the PH community in the UK. We do this by funding research into PH, raising awareness of the condition, and helping people in their day-to-day lives.
Pulmonary Hypertension RN
Pulmonary Hypertension RN is an educational resource for patients, caregivers, friends, and family members interested in learning about PAH. It is an exciting time for the pulmonary hypertension community because new pathways to treat the disease and new treatments are being researched and approved by the FDA (Food and Drug Administration).
Pulmonary Hypertension Society
The Pulmonary Hypertension Society of Australia and New Zealand is a ‘Not for Profit’ organisation with a mandate to advocate for a sustainable ‘model of care’ with equitable access to skilled clinicians that allows timely diagnosis, treatment and ongoing management for patients with Pulmonary Hypertension in Australia and New Zealand.
The PHight or Flight Project
I was tired of reading over and over again the same bad news that the doctors have already given me. I joined online support groups and started to talk to more and more long-term survivors, and exceptional people with PH. Some of whom had a pretty good quality of life considering how debilitating PH can be. I thought to myself 'why isn't this information available?' This thought lead to the creation of The PHight or Flight Project. I originally started the blog in hopes of sharing these exceptional stories...
MayoClinic
Some forms of pulmonary hypertension are serious conditions that become progressively worse and are sometimes fatal. Although some forms of pulmonary hypertension aren't curable, treatment can help lessen symptoms and improve your quality of life.
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