My Free Advice to PH Newcomers

Nowadays, we pay for just about anything imaginable. But today is your lucky day! I’m offering free advice to those of you new to pulmonary hypertension (PH). Those who are “well-seasoned” may learn a few things, too.

When I sat down to write this column, I thought back to my diagnosis in 2005. My tips consist of things I wish I had known. Some are reminders to myself.

First, PH is not a death sentence. There is currently no cure, but you can manage the symptoms. I’m not making light of this disease. It will turn your world upside down.

Don’t add to your stress by reading old and misconstrued information on the internet. Research reputable websites. Learning the latest news about PH is essential. Awareness and advocacy benefit your health.

Receiving a PH diagnosis is overwhelming, though for those who have spent years searching for a diagnosis, it may offer a sense of relief. Then the other bomb drops: There is no cure. It is OK to need time and space to “ wallow” and take it all in. It is OK to yell, cry, and scream.

Be patient with yourself. Talk to close friends and family. When ready, look for a PH specialist or a PH center. Most doctors — even those who specialize in pulmonary or cardiac diseases — aren’t experts in PH. But education and awareness are improving. Once you find a PH team you trust, you will find this new journey is less stressful to manage.

Often, it takes a trial-and-error approach to find a treatment regimen that works. As time passes, your PH team may need to adjust your medications. Don’t compare yourself to others. It is a complicated disease and our bodies react differently to treatments.

I find online support invaluable when dealing with issues I think no one will understand. Others find support among family, friends, and churches. I recommend having multiple channels of support. Some days you may need them all.

I have been through numerous roller coaster rides during more than 14 years of living with PH. Some have been so bumpy that no one was sure I would make it. Thanks to God, family, friends, and my medical team, I have pulled through on more than one occasion. I have received prayers and support from around the world during my toughest times.

Do not give up! Every day will be different. Focus on the positives with each new day. There is always something for which to be grateful, no matter how bad the day.

What tips helped you upon receiving a PH diagnosis?

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.