Anyone diagnoised with Group II Pulmonary Hypertension

[Libby]

Hi Mandy – I’m sorry to hear of your new diagnosis. MY PH is caused by LHD. I have a laundry list of heart defects.
-Pulmonary stenosis
-Pulmonary atresia
-ASD
-VSD
-Pulmonary Hypertension
-Congenitally corrected transposition of the great arteries
– Born with absent pulmonary artery, corrected by a shunt
– Tricuspid and pulmonary valve regurgitation (about 30% for both)
– Situs inversus
-Dextocardia
-Heart arrhythmia.

Hopefully I didn’t forget anything 😉

For me, they have done pulmonary ballooning of my arteries through a heart cath which helps for a few years before the arteries shrink back down. I can’t say I’ve changed my life style much, I am a health weight and try to eat good. There are some medications on the market that I’ve heard good things about, though I personally am not a candidate for them but you might be! Keep us posted.

[Brittany Foster]

Hey Libby,
Good to hear from you here ! I totally get it with the list a mile long of congenital heart defects. Most of my defects were picked up past the age of 18 (even though I was living with them all my life) This put some extra strain and stress on the heart over the years and definitely contributed and played a role in the PH for me. It was a lot worse when I had an unrepaired VSD but when that got fixed they thought I was “fixed” until I started having complications when I was playing sports. Did they recognize the PH with you pretty quickly or did it take a bit to get a diagnosis and be followed for it? I know it’s hard when you have CHD and PH because there is not much they can do for medications and they probably don’t want to mess too much with the heart and blood pressures too. At least that’s the case for me and them being hesitant about medications. I’m on more medications and therapies for my heart than I am for anything else. With the exception of BIPAP and oxygen.

[Libby]

Hi Brittany – yes that is exactly the case for me regarding the meds! The doctor says that some of the PH meds can interfere with my heart so it’s better just to let it be. I was only diagnosed with PH 2 years ago which boggles my mind. I’ve had CHD obviously since birth and since they are so complicated, it’s amazing they didn’t find it earlier. Although I have to say that my doctor said the heart cath was the only good way to really diagnose it and I hadn’t had one since I was 12 years old, then I had another at age 23 and that’s when they found the PH.