Frequently Asked Questions for Family and Friends of PH Patients

My loved one was diagnosed with pulmonary hypertension. What do I do now?

Take a deep breath

FAQs for Family and FriendsPHA 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; a number of treatment options are available to reduce symptoms, and clinical research is currently being conducted to improve treatments and find a cure.

Educate yourself

There is a great deal of information available about PH. To avoid misinformation, start your research with trusted sources: your PH specialist, PHA’s website or PHA’s Pulmonary Hypertension: A Patient’s Survival Guide (available in the PHA Store or by calling 301-565-3004 x0). 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.

What questions should I be asking my loved one’s medical team?

  • How do I contact my loved one’s PH doctors?
  • What symptoms should I monitor and who should I contact if they change?
  • What constitutes an emergency and who should I contact in the event of one?
  • What medications are you prescribing and why?
  • What testing will you routinely perform and why?
  • How often will we be seeing you? Who do I contact to make an appointment?

What sorts of symptoms should I contact the doctor about?

  • Chest pain. Is it new, more frequent, or lasting longer? Has the sensation changed (i.e. sharp now vs. dull before)? Is it accompanied by nausea or does it travel from one body part to another?
  • Fainting
  • Bleeding 
  • Not eating or decrease in appetite
  • Shortness of breath when doing activities he or she used to be able to do
  • Increasing fatigue
  • Persistent vomiting or diarrhea
  • Fever of 99 degrees or higher or chills

What is the best way to help when my loved one is feeling depressed?

Many individuals who suffer from chronic disease will also suffer from periods of depression. Talk with the patient’s physician if you feel the depression is escalating or negatively impacting your loved one’s ability to cope or manage daily activities. Encourage your loved one to participate in individual therapy or to join a PH support group. When possible, take trips or leave the house to do activities you both enjoy. Be attentive to your own mental wellbeing as well. When your loved one has less energy or you’re feeling overwhelmed, journaling can provide a safe outlet for you and your loved one to express and process your feelings.

I have so much to do between taking care of my loved one and managing day-to-day responsibilities. What are some realistic ways I can cope with stress?

Consider joining a support group or visiting a therapist to learn new ways to manage stress. Many caregivers find it helpful to schedule recurring, non-negotiable time to do the things they find relaxing. You might go for a walk, participate in an exercise class early in the morning or in the evening, attend activities at your place of worship or meditate. Getting away from situations that cause stress, even for short periods of time, can help you feel refreshed and ready to meet your responsibilities. Connect with other caregivers

Responses provided by Darci Albrecht, MSW, Vera Moulton Wall Center at Stanford University, Palo Alto, Calif., and Natalie Kitterman, BSN, RN, CCRP, Intermountain Medical Center, Salt Lake City, Utah.

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.