Take a deep breath
PHA SA is made up of a community of patients, caregivers and medical professionals who can provide information and support as you begin your journey. We know more today about the disease than even five years ago; several treatment options are available to reduce symptoms, and clinical research is currently being conducted to improve treatments and find a cure.
There is a great deal of information available about PH. To avoid misinformation, start your research with trusted sources: your PH specialist and PHA SA’s website. Learn about available therapies, how they work, and possible side effects. Ask your loved one’s PH specialist about treatment goals and how they will be measured. Read up on your insurance plan to determine if you have prescription coverage, if your loved one needs referrals and prior authorizations and if you require a co-pay for physician visits and testing.
Talk to your loved one about how to best provide support on this journey
Don’t assert yourself too aggressively or try to take control. Instead ask, “How can I help?” Don’t take the lead on activities your loved one can still do independently, but be sensitive to limitations as they become apparent. PH patients have good days and bad days. Be prepared to adapt your level of involvement to the ebb and flow of your loved one’s energy levels.
Be your loved one’s advocate
As the people closest to PH patients, family and friends can see how patients are affected by their illness on a daily basis. If possible, attend doctors’ visits to help record and retain medical information and discuss symptoms the patient hasn’t noticed. PH patients may not always look ill, so it is important that caregivers understand their limitations and make others aware of them as well. Speak up to help relatives and friends recognize the challenges your loved one faces.
Encourage compliance so your PH patient takes medications as prescribed
Contact your loved one’s medical team if you have questions about treatment or if he or she experiences side effects. Family members can also help patients track vital signs between appointments by encouraging their loved ones to weigh themselves and measure blood pressure, heart rate and temperature every day.