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Have You Been Unresponsive to PH Treatments?
Unfortunately there are PH patients who from the start seem to be unresponsive to the various PH treatments available. Then there are patients who do well on treatments for many years and those who do well for a shorter amount of time. My son’s quality of life improved with IV Flolan and an assortment of PH oral medications. However, 5 years later he declined and treatments stopped helping. A last attempt to stabilize him before listing him for transplant was an atrial septostomy which is mentioned in the article I have shared. The septostomy didn’t help and my son was listed, but also mentioned in the article is the Potts shunt and I have known that to help several pediatric patients.
Have you had difficulty finding a PH treatment that you are responsive to? What have you tried and what further options have been discussed. Share your experience with others going through a similar struggle.
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