Hi, I was told that my pressures are over 100....I really don't know what that means, but, my pulmonologist told me I am very, very sick. My condition has improved dramatically with the onset of the Remodulin pump. I don't like the pump, but, I don't have home oxygen, so, I guess I should be grateful for that. I just received my discharge summary in the mail today and it states that PAH (or PH) is a known side effect of dasantanib. Huh. Nobody told me that before. : )
Thank you for inquiring!! Best of luck to you and your family!! Kelly On Feb 22, 8:00 am, MK <powellfamil...@yahoo.com> wrote: > Oh wow! My daughter has PAH and it is a very scary diagnosis. She > has PAH secondary to a congenital heart defect. She also has sleep > apnea, which has exaccerbated her pulmonary artery pressures. May I > ask what your pulmonary artery pressures are? My daughter's pulmonary > artery pressure is double what it should be and has been double for 6 > years. There is likely no reversing it, unless a cure is found, but > in 6 years, it has not gotten any worse and she has no external > symptoms. Due to her other health issues, there's no way she'd ever > qualify for a heart and lung transplant either, but so far, God has > really kept her safe despite these very elevated pressures. > > Praying for you and for them to find a good treatment plan for you > with the PAH. And, I am ALWAYS praying for a cure for PAH!!! -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
