Welcome to the Allied Health Professional Forum

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Welcome to PHA Online University and the Allied Health Professional Board.  I am excited about this wonderful online tool and truly hope that we can share our expertise in getting knowledge out about PAH.  I know that by sharing our knowledge we will be providing high quality and consistent care and education to the PH family.  My introduction to PAH was in the Intensive Care Unit at Froedtert Hospital with a scleroderma patient on Flolan in 2003.  I was in my orientation and assisted in placing a Swan-Ganz Catheter at the bedside and running nitric through the vent.  I was more impressed that the PA pressures were higher than the regular BP.  I met Dr. Francisco Soto shortly after that experience and began caring for more and more of the PAH patient's.  I love the challenge and complexity of each patient and how we would rapidly up titrate Remodulin SQ.  I looked for opportunities to learn more about PH and the treatments and networked with Accredo staff in teaching Flolan and Remodulin SQ for new and transitioning patients.  I became a resource in the ICU for staff on PAH and developed a wonderful working relationship with Dr. Francisco Soto and Dr. Kenneth Presberg.  I could ask Dr. Soto and Dr. Presberg a question and their willingness to teach lead me to apply for the PH Coordinator position.  I became the PH Coordinator in summer 2008 at Froedtert and the Medical College of Wisconsin.  In our PH clinic we see a variety of patient's that include PAH (idiopathic & familial), Diastolic dysfunction, ILD, Sclerosis, Scleroderma, and many more.  We are involved with multiple studies, i.e. Compass and PHAROS study.  My job includes managing these patients over the phone and in clinic. I also teach critical care class on PH.  A good amount of our patient’s  travel at least 60 miles to be seen so it is critical that coordination of all tests are done on the same day to limit travel.  At times I need to make split second decisions in order to keep patients alive.  I have heard from many patients and their families that I am their life line.  I love patient care, PH patients and the PH team assembled here at Froedtert and Medical College. 

Let’s get the open communication we need to provide the best for our patient’s and become the leaders to help reform how we obtain and access care for this population of patients. 

One of the most challenging aspects of my job is the insurance verification and prior authorization for medications.  Even with the best documentation in the world that denial means that patient has to wait longer for treatment.  I don't think I am the only one who goes through this or am I?

Another part of my job that can be rewarding but stressful are those phone call reporting that the patient's are slowing down, declining walks, & having more difficulty breathing that is connected with another disease process (Scleroderma, Lupus).  It takes a lot of support and coordination with RT, other providers and PH specialists to get this patient to remain at an optimum level of function.  I wonder sometimes if the patient's hang on for the family or are we as medical professionals pushing too hard?

Under the direction and passion of Dr.Soto we have one of the largest patient populations in the world on Remodulin SQ.  Many people wonder how we did it.  Team work and open communication with patients.  It takes a dedicated specialty pharmacy and staff in the field and a supportive MD and nurse that can be available for staff.  I am more than willing to share some of my challenging and success stories.

Laura A. Ernster RN, BSN
PH Coordinator
Froedtert & Medical College of Wisconsin