Pulmonary Hypertension Association Celebrates Donate Life Month Group Encourages People to Become Organ Donors as it Promotes the Need for Early Diagnosis

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Throughout April, the Pulmonary Hypertension Association (PHA) celebrates Donate Life Month and the importance of organ donation for many people living with pulmonary hypertension (PH). PH, also known as high blood pressure of the lungs, is a debilitating disease that affects the functioning of the heart and can lead to right heart failure.

Pulmonary Hypertension Association

"Listing for transplant is a very difficult decision to make, and for most, it is a last resort. We will always appreciate the gift of life that we have received." - Michelle Liu

Throughout April, the Pulmonary Hypertension Association (PHA) celebrates Donate Life Month and the importance of organ donation for many people living with pulmonary hypertension (PH). PH, also known as high blood pressure of the lungs, is a debilitating disease that affects the functioning of the heart and can lead to right heart failure. Because PH symptoms include shortness of breath, chest pain and fainting, the disease at first glance might look less threatening. But without treatment, patients survive on average less than three years. PHA relies on donations to fund PH early and accurate diagnosis awareness and education, patient and caregiver support, specialty care resources, research to find ways to prevent and cure PH.

Michelle Liu’s daughter Esther is a PH patient whose double lung transplant saved her life. Esther was diagnosed with severe PH at the age of 2, and immediately was started on IV therapy due to the condition of her heart. As her disease continued to progress, her parents made a decision to list her for double lung transplant.

"Listing for transplant is a very difficult decision to make, and for most, it is a last resort,” said Michelle Liu. “The best advice I received from the transplant team was to list while she is strong, because the stronger they are for transplant, the better they recover afterwards. I've found this to be so true. Esther could not walk up a flight of stairs before surgery, and now she can walk a mile, ride her bike, play soccer and swim with her brothers. Although the road has not been easy, I don't regret listing her for a single day. We will always appreciate the gift of life that we have received."

Esther was fortunate enough to find a donor, but some patients are not as fortunate. PHA works every day to find ways to prevent and cure pulmonary hypertension. The best avenue to treating the disease is an early, accurate diagnosis.

Through its work with The Early Diagnosis Campaign: Sometimes It’s PH, PHA is working with the medical community to decrease the time from onset of symptoms to accurate diagnosis of PH. It takes an informed patient and medical professional to notice the signs and seek the appropriate tests. PH can present as asthma or COPD and include symptoms such as breathlessness, fatigue, dizziness and chest pain. But a right-heart catheterization is the definitive test to diagnosis pulmonary hypertension.

PHA has made great strides in helping to improve outcomes for PH patients. There are now 12-FDA approved treatments for the disease, but still no cure. Because of this, patients still turn to transplant to save their life. To learn more about pulmonary hypertension and join the fight against PH, go to http://www.PHAssociation.org.

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA does this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals.

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Renee Hockaday
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