Libby

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.

I used hormonal birth control pills from age 17 to 23 and had NO idea it wasn’t recommended for heart patients. No one ever told me this, I found out after reading the warning label out of boredom. LOL I got off birth control because it was causing me to have weird PMS cycles and no sex drive at all. For a while I used the Daysy, a European device…[Read more]

I feel heartless for saying this, but quite the opposite for me. I am SO used to hospitals, needles, surgery, etc. that it almost feels comforting and I don’t get worked up easily. I feel bad for my husband if he ever needs to go to the doctor just because I know he hates it but I am much calmer about it than he is.

That’s exactly right Brittany! I hate the ‘wait and see’ approach too only because you know it’s inevitable and all the well-wishers in my life always tell me ‘maybe you’ll never need it done! Maybe your valve will last forever’. Honestly I hate it when people try to be positive about my health issues, only because it feels like a minimization…[Read more]

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.…[Read more]

I also have heart disease as the cause for my PH. I was born with ASD, VSD, pulmonary stenosis, pulmonary atresia, dextacardia, situs inversus, congenitally corrected transposition of the great arteries, absent pulmonary artery corrected by surgery with a shunt, absent pulmonary valve, pulmonary and tricuspid valve regurgitation at around 30% ,…[Read more]

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…[Read more]

Oh Colleen! I love you for posting this. I am experiencing this right now. Migrains, light headedness and low oxygen have been my recent companion so my cardiologist did an echo to see how things looked. My echo was normal which I suspected, because I think the issue is more in my lungs which an echo can’t really give great info on. Plus I was…[Read more]