PHA Opens Lung Transplant E-mail Group, an Open Forum for Patient Support

The Pulmonary Hypertension Association has just launched a Transplant E-mail Group, designed to support and educate those who are waiting for or interested in applying for a potentially life-saving lung transplant. There is still no known cure for pulmonary hypertension, which is a progressively debilitating condition that can greatly affect daily living activities and can likely lead to right-side heart failure without adequate treatment. Today, the only reliable solution for advanced pulmonary hypertension that continues to worsen despite treatment with a pulmonary vasodilator regimen is transplantation — an option that on its own involves considerable risk, requires patience while waiting for a donor, and necessitates lifelong post-operative maintenance.

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The PHA’s new e-mail group is actually a private forum where PH patients, caregivers, and significant others can go to freely discuss transplantation concerns with a supportive mix of medical professionals and those who have personal experiences to share. The forum is open to anyone interested in learning more about the procedure, whether you are a PH patient still considering it or already waiting for it, a caregiver, or a transplant recipient.

Lung transplants are normally recommended to patients who are unresponsive to treatment and are likely to die from the disease in 1 to 2 years. Unfortunately, lungs are not so easily acquired for transplantation. In 2010, only 1,800 lung transplants were performed on patients on the Organ Procurement and Transplantation Network (OPTN) waiting list, which is estimated to be able to grant viable lungs to only half of the patients on the list in any given year.

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A successful lung transplant does not guarantee a complication-free post-operative period, as a risk that the recipient’s body will reject the donor organ or an infection will develop are always risks. Despite these risks, many opt to get on the OPTN waiting list with high hopes of undergoing a successful procedure and getting to live a few more years. The PHA’s Transplant E-mail Group is an ideal place for questions to be comprehensively answered, straight from people with experience, or people who are in the same situation. Click here to join the group.