My 8 year old has IPAH 2018-10-01T22:51:22+00:00

Home Forums General Discussion (Public Forum) My 8 year old has IPAH

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  • Sarah
    Participant
    Post count: 1
    #10110 |

    Hello, I am brand new to this group. After a year and a half I am just so tired of feeling alone. My daughter was diagnosed with IPAH last March. Sheis currently in the Hospital gping thru a transition from IV remodulin to orenatram. She also takes letaris and adcirca daily and sleeps with oxygen every night. We are hoping she does well on the oral meds which are not yet FDA approved for children. I don’t care at this point. I just want her to have a childhood the best that she can. She lost a lot of her indendance and freedom to be a spontaneous child. This new therapy will give her some of that back. I am not complaining. Being able to maintain her disease and see her and talk to her everyday is a miracle. We caught it just in time after much misdiagnosis. We just live so much in the now that I forget that we have no idea what kind of future lies ahead. Today I was reading the side effects of the orenatram and realized I necer thought to ask if women with PAH can have children. Her doctor is always honest with me. She told me ot is most likely not safe. Especially if the patient is really sick. I never thought my daughter might not be able to give me grandchildren. (I know there are other ways to have kids.) But then I was reminded of the harsh reality. Will she be alive in 20 years to even ha e the option? Sometimes I have to deal with the mortality of my first born and it hurts so bad. I feel so alone. I know none of us really knows how long we will be here. But it’s like she has an expiration date pending on her life. Does anyone on here understand this feeling? How do you cope with it?

  • Michael K
    Keymaster
    Post count: 13

    Sarah,

    Thank you for writing out your thoughts and feelings. I don’t know if many parents are on myPHA, but there are several parents I can connect with you by email or phone. A good place to start is the support group leader of the DC pediatric support group. Michelle Liu is a mom of an 8 year old, too, and she’s also a primary care doctor professionally.

    Here is her contact info as posted on the PHA website: Leader Michelle Liu, Phone 757-319-1935, Email michandmo@hotmail.com. Please get in touch with her, and also please keep in touch with PHA.

    You are not alone.

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