April has been named the month for highlighting the importance of organ donation for those living with pulmonary hypertension (PH). The Pulmonary Hypertension Association (PHA) is celebrating Donate Life Month to encourage people to become organ donors and be aware of the need for early screening, diagnosis, and treatment of the disease.
The PHA depends on donations to continue funding initiatives that promote education and awareness; specialty care resources; caregiver and patient support; research to find new treatments; and eventually a cure for the disease. The Association’s new initiative to promote organ donation for the purposes of facilitating lung transplants for PH patients is one of the most important advocacy missions to date. As part of the effort, the PHA is sharing a personal story about how organ donation can make a major impact in a PH patient’s life.
Esther was diagnosed with severe PH when she was 2 years old, her mother Michelle Liu recalls. As soon as she was diagnosed, she immediately started on IV therapy because of her heart’s critical condition. Her disease continued to progress and her parents decided to put her on the waiting list for a double lung transplant; thankfully, she was matched with a donor, and the procedure saved her life.
Michelle Liu said in a press release: “Listing for transplant is a very difficult decision to make, and for most, it is a last resort. 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 very lucky to have a matching donor, but some patients are not so fortunate. PHA works hard each day to find new ways to prevent and ultimately cure the disease, but the best approach is to diagnose and treat the condition as early as possible — sometimes through a lung transplant.
Through its work with The Early Diagnosis Campaign: Sometimes It’s PH, PHA is imploring the nation’s medical community to make the necessary interventions to reduce the time between onset of symptoms and an accurate diagnosis of the disease. It is necessary in both medical professionals and potential patients to be aware of and know how to pinpoint any signs of PH. Symptoms might seem less threatening at first glance since they consist in chest pain, shortness of breath and fainting. However, if untreated, PH patients survive less than 3 years on average.