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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Is One Thing You Learned/know About Pulmonary Hypertension?

What Is One Thing You Learned/know About Pulmonary Hypertension?

I am very curious by nature and upgraded myself to just nosey. As you may be familiar with me (since I adore this site and your friendship).

I was diagnosed with PH in February 2022. I am an only child so I am always seriously joking and I rely on laughter to get me through. So I am rarely totally serious or totally joking (I'm like a combo meal). I say to my friends, "you want some fries to go with your shake" each time they get out of my car (well as of press time - I am still car… read more

A myPHteam Member said:

URAIWAN … PAH is specific to the arteries in the lungs off our right heart. They are missing something we manufacture ourselves that makes them dilate to reduce the
Pressure from blood flow into our lungs. At least this is what I understand about
Mine. Pulmonary Arterial Hypertension.

posted 13 days ago
A myPHteam Member said:

I have learned that this is not raredisorder anymore! The number of people that have it are in great numbers

posted 16 days ago
A myPHteam Member said:

You need to go the the pulmonary hypertension association hon. My heart Dr is very smart but pH is a very specialized disease so you really need to find one that that's his only specialty. It will be life saving doll I promise you that. I'm on tadalafil because the one your on didn't work for me. The pH Dr will do a right heart Cath because that is the only real way to see if you have pH or not. Your kidneys can be acting up because of your pH. Mine caused me to have chronic kidney and liver diseases because my heart Dr let me go for so long with out any treatments. He is not the one who can prescribe all of the speciality meds that come from the specialty pharmacy.

posted 9 days ago
A myPHteam Member said:

My pulminary doctor has now revised his original diognosis somewhat I have a kidney problem that my Cardiac/pulminary Hypertension guy told me to do nothing about because I guess he thought My PH would get to me before the Kidney problem but my primary doctor insisted I take a kidney cat scan. Now the pulminary man thinks some of my breathlessness might come from the kidney problem so they want me to proceed ASAP with a Nephrology and Urology work up. I really don;t know which side is up right now so I will see both of these specialist and see if we get any new insights
Right now they want to wait on the Heart Catherazation I can barely keep up with these doctor appointments

posted 11 days ago
A myPHteam Member said:

Hi Sarah
I guess "Go For IT:" is what most of us on this site are really doing
We are out here in NO MAN'S LAND but we are all giving it a shot, we all all going for it
Good Luck to all

posted 11 days ago
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