Hi I am new here so this might take me a while to figure out :) Last Month, My little sister was diagnosed with PAH. Her tests show that it is significant, but her symptoms don't. I guess that's why it was so hard to catch. At first, I thought this was a death sentance. My grandmother died of PAH when my Mom was only 15. So I was and still am scared. I don't yet understand everything, but I guess that will come in time. My sister still acts the same as she always has,so I'm not sure how she is really feeling emotionally. I'm scarred to ask.
We did get some good new after her tests last Thursday. She has no build up in her heart arteries. So that's good. She is on Viagra and Cumidin right now. Mom and Dad are working on getting Kchip and other assistance for my sister to get her other medications. I don't know much about that though.
I caame to this site to get some positive support from others who are going through what we are. I can't imagine what my parents are going through mentally. My sister just seems to take it in stride. I haven't seen her cry, or say much about it other than she hates wearing Oxygen all of the time. She is only 17 so she is still in high school.
We are still tring to take it all in though. I'm not sure about what her next steps are concerning college and career. But maybe that's too far ahead to think about.
If there is anyone reading this, please respond with whatever you feel that I need to hear. I will try my best to keep my diary up to date :)
Hey everyone :)
So today my sister's Kchip insurance got approved! It is a sin for a life saving medicine to be $40,000 a year, but thank God for the assistance programs out there that helppeople like us out!!! So hopefully she can got her tyvaso soon. I pray that it helps her tremendously! We had somewhat of a heart to heart the other night. She told me about how scared she was when she started getting tunnel vision going up the stairs one time. (that was before the diagnosis) she also told me about when she was on a trip in Indianapolis with her FFA chapter (she is Madam President) to the National Convention. she said that they were walking through town to get to the center, and she could not keep up, so they just left her...I got so upset about that. She said it ruined her whole trip. How can people be so insensitive?!?! well, I just thank God every day that the doctor diagnosed her when he did. I am happy my sister got to share with me. I love her so much. Oh, and she is going to EKU with me fall semester and we are going to be roomates! And she found the exact major she wanted! (Agronomy....dirt science. lol) But today was full of good news and my Mother and Father were the happiest I have seen them in a long time...Thank you God!
Well I go back to school Monday so I need prayers for that. haha. Please keep my family and everyone elses in your prayers. God is awesome!
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