April 17th 2015 2:20 pm
With so many people on the transplant list and a shortage of viable organs, transplant is as much about preventing transplant as it is about being listed and ultimately receiving that precious gift of life. Patients and caregivers want to make sure they have exhausted every option before being listed. Transplant is an amazing gift, but it is NOT a cure. Transplant comes with its own list of side effects, medications and long-term issues.
We are starting a series of articles in partnership with other organizations that will educate and inform our families. The series will provide information that will help you ask your medical staff the right questions as you consider transplant as a treatment option. If transplant is the option for you, we hope to provide useful information that helps you throughout your transplant journey.
Education empowers patients and families, making you a vital part of your medical team as a patient/parent advocate. Your medical team will appreciate the fact that you want to learn everything you can about your child’s condition. It is a part of the family-centered care model that many hospitals are adopting and by which many are rated nationally.
Our first article is written in partnership with the Pulmonary Hypertension Association (PHA). Pulmonary Hypertension can eventually lead to lung or heart/lung transplant. The Pulmonary Hypertension Association defines pulmonary hypertension (PH) as “a rare, debilitating disease in which high blood pressure in the arteries of the lungs can lead to right heart failure.”
PHA was established in 1991 by four women, and has evolved into a membership association of more than 16,000. The organization’s website offers a multitude of educational materials for patients, caregivers and healthcare providers. PHA offers many ways to engage with your clinicians, whether by finding a doctor or giving feedback to your specialty pharmacy. PHA’s devotion to research and finding cutting-edge technology in the field of PH is consistent with its mission of “find[ing] ways to prevent and cure pulmonary hypertension (PH), and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness.”
Early diagnosis is critical to getting the right treatment for you child. With early diagnosis your family will be able to connect with the right experts and explore many different therapies that can be used before transplantation is considered. PHA has started an Early Diagnosis Campaign which is an organization-wide effort to eliminate diagnostic delays & reduce the average time to accurate PH diagnosis and appropriate treatment.
Once a patient has been diagnosed, PHA has an “Empowered Patient Online Toolkit” that offers educational materials, questions to ask, documents to keep, travel resources and a place to document medical information. In addition PHA’s website – PHAssociation.org – lists all available treatments, how to contact doctors who specialize in PH, providing feedback to your specialty pharmacy and insurance resources to help you cover the costs involved.
Once diagnosed, PHA has an “Empowered Patient Online Toolkit” that offers educational materials, questions to ask, documents to keep, travel resources and a place to document medical information. In addition, PHA’s website – PHAssociation.org – lists all available treatment options, resources on how to contact doctors who specialize in PH, or to provide feedback to your specialty pharmacy, as well as insurance resources to help you cover the costs involved.
If all other options have been exhausted and transplant is your current option, PHA has many wonderful resources to help your family through the transplant journey. One of the best parts about PHA’s support is that it is truly family-centered, including support for the caregiver, the patient and the siblings.
Wonderful resources, including the document “Transplant and your child: Front Listing to New Lungs,” will take you through the entire transplant process, while you’ll find answers to many of questions you might have during the transplantation process in “Answers about Lung Transplantation for Pulmonary Hypertension.” Finally some great tips and hints for parents from PHA’s Scientific Leadership Council are available in “Transplant and Pulmonary Hypertension: Information for Parents.”
PHA’s website is a tremendous resource for any family dealing with Pulmonary Hypertension and especially for those considering transplant. We encourage you to explore PHAssociation.org, to request their printed materials, and to connect with PHA’s community.