So you’ve just received a pulmonary hypertension diagnosis. What now?
A columnist shares insight from years of living with PH
If you’ve recently been diagnosed with pulmonary hypertension (PH), this column is for you. I’ve been there, and I know what you’re going through.
It might feel like everything is a blur as you grapple with the whirlwind of emotions that come with such a devastating diagnosis. But remember, you’re not alone; I see you.
For many, it’s a moment of validation after months or even years of uncertainty. Letting the tears flow is perfectly OK. Let it out, my “PHriend,” those tears have been building up for too long. A good cry can be incredibly cathartic, and it’s normal to feel broken when facing a rare disease that has no cure.
After that heartfelt release, take a moment to process the highs and lows of your feelings. You’ll revisit the intricacies of this emotional journey many times along the way. Even after almost two decades of battling PH, I still find myself navigating these types of moments. Let’s embrace this new journey of yours together!
Get informed and find your village
The following are a few of the tips I’ve learned over the years that might help you feel empowered. The more informed you are, the better equipped you’ll be to make decisions about your well-being. Don’t hesitate to talk to your doctor about any concerns you might have. Ask questions. Connect with support groups or any of the various online communities that are out there. Finding others who genuinely understand what you’re going through can be a game changer. I wish I had sought support when I felt the walls closing in on me.
Getting educated about PH and the various treatment options is critical. It can be overwhelming and scary at first, but the more you know, the better off you’ll be. I always recommend finding a highly trained PH specialist. The Pulmonary Hypertension Association offers a valuable resource on its website to help you find doctors based on your zip code.
While researching, remember to read only credible sources, such as Pulmonary Hypertension News, the PHA, and others. The internet is full of information, and not all of it is updated or accurate.
Once you have assembled a well-trained healthcare team, you’ll learn about the various tests and treatments that are available. You’ll also want to seek a robust support system. Believe me, this new journey will take a village to help you navigate it.
Life as you once knew it may look much different now, so try to remain flexible. Family dynamics and work tasks may be challenging until you find your groove again. Allow yourself a grace period while you figure out what works best for you. Planning ahead and pacing myself are two things I’ve found helpful.
It’s also essential to protect your mental and emotional well-being. This may include seeking out a therapist who specializes in chronic illness. Don’t be afraid to reach out for help when you need it.
Remember to prioritize self-care. Living with PH is demanding, so take care of your body by getting enough rest, eating a balanced diet, and incorporating gentle exercise into your routine. Don’t push yourself too hard and listen to your body to find a balance that works for you. It may require some trial and error, but taking care of your physical health can significantly improve your quality of life with PH.
I hope you find these tips, compiled from years of experience, helpful. Together, we can continue to “PHight” and become stronger!
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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
Helen
Thank you for the article. I have found a fair amount of resources, when looking for information (I am recently diagnosed), specific to PAH but fewer about the other groups. Our local specialty service for PH also seems to be mainly taking patients with PAH, perhaps it is related to the clinician’s interest. Where do we group 2 people go for pulmonary hypertension support and resources related to our category specifically or do we just stick with cardiology alone as our problem is secondary to the left heart problem? I also want to better understand pulmonary hypertension per se and have suspected it for quite a while but providers didn’t seem to take my comments, about gradually starting to feel more breathless, seriously for some time..