Tonight I was clicking through the PH emails I get, reading other people's stories about their treatments, meds and so on, and I realized that it was three years ago this week that I was tumbling down into the Big Disease Pit. I'd been diagnosed a few weeks earlier with another lupus flare and pulmonary hypertension, I was on prednisone, K was working in California... and I started coughing up blood. I had to haul the kids to the ER with me, send them away with friends, then I was admitted for pneumonia. Rough. I think the best memory I have of those days is when all my girlfriends came to visit and make me laugh... thanks again my friends, it still means a lot that you were there.
My doc has taken me off of Revatio, my only "real" PH medication. She said it tends to lose effectiveness in patients after about a year or so. It's made me a little nervous, because Revatio has been my security blanket and I worry that my pressure will go back up. I mean, it's nice having fewer pills to take but I don't want to take any chances... She believes Cellcept will handle the disease process all by itself but I won't be convinced until I have another echo. I'd actually rather have a right heart cath, since most PH patients have one yearly, and it's been over two years since my first one. My docs are consulting with the PH specialist in Seattle who oversees the ANMC cases of PH, but I wish wish wish I could just fly down there and talk to him in person.
Yes, worrying about anything will make any kind of pressure anywhere go up. For now I'll just not think about it so much, and celebrate another year above ground!
1 comment:
Wow, I can not believe it has already been three years. I remember coming to see you in the hospital and briging you Pepsi.
Shannon
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