Libby

Hi brittany – No exercise that I know of, I guess I will find out. Just an ultrasound that will include my stomach/pelvic area where the femoral arteries begin and down my legs.

Thanks for that validation Colleen. I ALWAYS feel like a “crazy” person who is bringing up “phantom” concerns. I guess you get to feeling that way when people don’t…[Read more]

I am so happy I stumbled upon this post. I am queen of balloon angioplasty and have yet to find ANYONE else who has had one as regular treatment for their PH!

I have been having balloon pulmonary angioplasty’s since I was a kid. I have had 4 so far and will be making it 5 shortly.

So for me, the procedure is very simple and relatively…[Read more]

Brittany, I am glad to hear I am not crazy, or that my theory is. My PCP is just an idiot (sorry that’s mean, but true) about my cardiovascular issues. I wasn’t pleased with his response. I have a cardiac appointment at the end of this month with a new doctor (I still love my main cardiologist at UW but want a second opinion) and plan to ask…[Read more]

The heat make my legs and feet throb/ache. I, too, get the bulging veins. I think my feet swell just the smallest bit. I always thought it was just a random thing….is this PH related?

Brittany- I, too, have had several in my head as a child. I have four very large “cut down” scars from them literally cutting the skin to expose the vein from when I was young. They rarely do cut down anymore. Now days my hand or wrist area is the go-to.

Interesting you bring this up because last time I was at the doctor’s office for just a primary care check up, they commented on some unusually low blood pressure. Low for me, I mean. Usually I’m around 110/65 or 70. At my last visit in June I was 94/60 and they showed some concern. My heart rate is also pretty low, although not too low. It’s…[Read more]

I hate it when people listen to a watered down version of my health issues (because a detailed, accurate description would probably short circuit their brain 😀 ) and they respond with “….but you look so healthy?” As if I’m lying to them.

LOL not a bad suggestion Colleen 😀

Great article Brittany, thank you! What’s even more frustrating is when your health issues are congenital and you know about them, so it’s only reasonable to believe your symptoms are related to your already-existing issues but your doctor deems them ‘unrelated’.

To me it’s a catch 22 with medical bracelets or something that goes in your wallet. Since the installation of my Melody Valve, my doctor gave me a plastic card (looks like a credit card) that apparently a medic/doctor could scan and get info, but since it’s in my wallet, I don’t forsee anyone being smart enough during an emergency to find my…[Read more]

Thank you for the responses gals! I apologize for a bit of a duplicate topic, as I missed the Cyanosis thread 🙂 Yeah my doctor is aware that I get purple feet but it seems relatively new that it continues to happen with the warmer weather now too. I live in Washington and we are only just now experiencing some weather that resembles summer and my…[Read more]

I get purple feet and knees! And those little red circles you mentioned Brittany, sort of blotchy-like.