Wednesday, August 24, 2011

Pulmonary Hypertension Patient & Family Resources

PHA Family & Patient Resources

One of the things that is most important at PHA is finding better ways to communicate valuable information to the patients, family members and medical professionals who are the reason for our work.

An example of that goal has just been released for caregivers…

Resources for Family and Friends is a free information packet > > <
designed especially for family members and friends of PH patients. It offers a range of opportunities to help caregivers plan their next steps, find important resources and connect with other caregivers. It follows the also free Envelope of Hope packet which we created almost two years ago for patients …and which we are constantly upgrading. Both packets can now be ordered online. Medical professionals are able to help patients and caregivers get these packets by giving out referral postcards which can be ordered in quantity at no cost. The packets are particularly valuable for new patients and their families. I’m particularly pleased that PHA is now focusing hard on building new ways to support PH caregivers. Lian Latham, a nurse who has treated many PH patients, says it well. “The families of patients are the true backbone support of PAH. They stand by the patients every day, providing solace and care to those who are in need. Often, they sacrifice themselves in many ways to make sure their loved ones get what they need. They are like the battlefield medics for PAH.”
PHA is glad to be able to help. Like PH patients, caregivers are not alone with this disease.
Labels: caregiver, Envelope of Hope, Lian Latham, Resources
for family and friends> <

Editorial : I think it should be noted, That Vanderbilt and Dr.`s Hemnes and Robbins of Pulmonary are my PAH Dr.`s ! Although they say they are not sure, if I have PAH or not ? I learned this from Dr. Hemnes. Some patients might be upset or amazed at no diagnosis ? I appreciate their honesty and candor ! I just asked them not to give up on me ! Although At Vanderbilt, I`m not sure that "Give Up" is in their vocabulary. Kudos, for Heart-Transplant, Dr. Mark Wigger and the team !

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