When I was 9 months old, I was diagnosed with congenital heart disease (atrioventricular canal, to be exact, and pulmonary hypertension. I was most likely born with the 2 holes in my heart, and the PH developed very soon after, or I could've had both at the same time and it was missed until I was 9 months. Who knows really? I guess it doesn't really matter at this point! Anyway, for my entire childhood and young adulthood, the main focus was always on my heart. I had plenty of appointments with my pediatric cardiologist, and if I had to guess, over 150 echoes in my life so far. My heart has been in pretty stable condition for a very long time, and I'm so thankful for that! I find it ironic that after we started focusing on the pulmonary hypertension part of my condition in 2002, I sometimes forget about the congenital heart disease I've got going on. When I talk to people, I always describe PH, the symptoms, the treatments, etc, but I forget to say WHY I have PH in the ...
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I really enjoyed your webpage blog. I haven't read everything there, but you really made me feel better. I have been wearing oxygen during nights for the last 2 years. Finally, after four sleep studies, it looks as if I will soon be getting a ViPaP machine. That will also be connected to my oxygen. As of a month ago, I now have to wear the oxygen 24/7, as well. It is so hard for me; and it helps so much to see that others, also, have fought with this mentally (and I hate to think of it as vain) feeling. It makes me feel so sad.
Yesterday, at my Doctor’s office, a woman my age (55) actually got up (after looking at me pointedly) and moved away. I bothered her; that is, the oxygen or the need for the oxygen bothered her. I am treated so much different when I wear/don’t wear the oxygen. It is like night and day.
My Mom says, “Wanda, you always think people are looking at you.” I had to think on that one, because actually it turns out that her words are true. Ever since I was a child, I hated to be stared at; really hated it. It made me feel sort of naked, for some reason. Good thing I was never a model or actress (snicker) … as if. Anyway, I was scrounging the internet looking for a nicer looking cannula (dreaming) and stumbled upon your page.
Thanks so much for being there. I read your diagnosis, and called my husband quickly to see if such could be my issue. My problem is from MS or *supposed* MS. I do wish I could fast forward several years to the point where I don’t care if my husband’s friends see me with oxygen on. He is a professor at a local university, and … I am cringing when they will first see me with this dreaded tube hanging down my face. I will read on your blog some more, and read the other people’s comments. Again, thanks for having started this. My best to you and yours,
Wanda
Welcome to my blog! I was touched by your comments. I know how hard it is to be out in public with something that no one understands, like the oxygen. But really, it is just plastic. You are the same person whether you have a tube up your nose or not! And if someone else gives you a look, or turns to walk a different way, well that is their problem, not yours!
Thanks for leaving a comment. I am happy to hear how some people find my blog, because I don't know how some readers come across it! I'm glad it's helped you, and I hope you'll stick around. :)
Take care,
Colleen :)