This topic contains 2 replies, has 2 voices, and was last updated by  Colleen Steele 6 months ago.

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  • #17340
     Colleen Steele 
    Keymaster

    It might be difficult for a healthy person to understand that sometimes good test results and  a report of no significant change from your doctor is not always what you are expecting or even want to hear. When you are not feeling well and experiencing what you believe to be a sign of something not right, but your test results aren’t reflecting that, it can be very frustrating. It’s not that you want to be sick but your instinct might be telling you that something is wrong and all you want to do is figure out what it is so that you and your doctor can start addressing it. Many have experienced this at least prior to their PH diagnosis, but what about after, as your body continued to change with the disease? How have you dealt with this situation? Most important, how did your doctor proceed in treating you with the knowledge that your test results did not reflect how you where feeling? What experience can you share to help others going through this situation?

  • #17376
     Libby 
    Participant

    Oh Colleen! I love you for posting this. I am experiencing this right now. Migrains, light headedness and low oxygen have been my recent companion so my cardiologist did an echo to see how things looked. My echo was normal which I suspected, because I think the issue is more in my lungs which an echo can’t really give great info on. Plus I was told by one doctor that my migraine was unrelated to low oxygen which I don’t believe!

    I also have to say one other thing. While I think we can all definitely agree we don’t *want* to be sick, personally I have been dealing with my health issues for ao long that it’s easier for me to cope with being sick than not. Does that make sense to anyone? In some ways I’ve resigned myself to it, not with a bad attitude but more if an acceptence. I know how to be the patient far better than anything else. This is so hard to explain to my family without sounding pathetic or depressed.

  • #17379
     Colleen Steele 
    Keymaster

    First of all Libby, I am so sorry that you are not feeling well. Migraines, light headedness and low oxygen combined is a serious challenge. My bet is on the lungs as well although changes in the heart can be slow and not appear on an echo for a while. Keep a watch on both!

    My son has always struggled with migraines and they are more times than not, a symptom of something else. Low oxygen, high blood pressure, dehydration, changes in medication, these and many other things could trigger his headaches. Are you seeing a PH specialist and/or pulmonologist? I would definitely reach out to them about these symptoms. Don’t dismiss them because one test result didn’t reflect how you feel. Every time you see ANY of your doctors let them know that you are continuing to feel this way. Try keeping a journal of when these symptoms are at their worse to help make connections to the issues. I hope you get answers soon! Keep us updated when you can.

    Your reality is that you are fighting a serious disease and with that, you are more aware of your health on a daily basis because you have to be! Accepting your illness is an important part of being able to advocate for yourself. It may be hard for others to understand but what is important is that you do!

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