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Thread: Reaching out, new for me -- dr. tests

  1. #1

    Reaching out, new for me -- dr. tests

    Hi,

    I never, ever reach out for reassurance online -- I pester the people around me for that! But I was reading some of the stickies here and noted that seeking comradery among other HA sufferers is one of the reasons for the site. So . . .

    I've lost a lot of weight and stopped using my CPAP. Went to the pulmonologist and he agreed I could *probably* stop using it, but wanted me to do an at-home sleep study just to be sure. I have an *enormous* fear of all medical tests. My ex-wife had cancer (and survived it, thank God) but the countless tests-leading-to-more-tests and no definite answer cycle broke my brain somewhere along the way.

    So, I hate tests.

    I finally heard back from the doctor's nurse -- while I was driving, no less -- that my apnea events were very mild now, but there was an issue with the oxygen saturation level. HA kicked in, hot and heavy. I asked what that could mean. She told me it was likely the pulse oximeter was off -- it sometimes happens with the unit included with the at-home test kit. So, the doctor wanted me to come by and pick up the more accurate, stand-alone device and test myself overnight with that.

    Already spiraling, I asked what could cause a low oxygen number if my apnea is so mild now. She said something along the lines of "underlying lung disease."

    And that was it, I was off to the races.

    After the call, I nearly passed out while driving. I was heading to my counselor at the time, so I thought I should keep driving. Note to others: just pull over! But I breathed through it and made it where I needed to go.

    When I reached the counselor's office, I was already Doctor Googling. I went through the likely diseases and tried to reassure myself I didn't have them. I walk 4 miles a day, I told myself, trying to argue with my irrational mind. While I have no symptoms of any disease, just recently had a physical, feel absolutely wonderful, I couldn't convince myself I wasn't dying.

    24 hours later and I've taken the unit back to the doctor. Somehow, I'm above the clouds for the moment and able to look down and see the course of the health anxiety attack laid out below me. There's no assurance I won't plunge back down into the storm and lose myself to spiraling again, but for the moment I'm sane enough to write this (overlong) post. I don't know what I'm after writing this, maybe just to see my words on the page and to leave a marker for others who come along with fear of testing.

    Rationally, I know that the worst case scenario is *most likely* a need to go back on the CPAP machine, but even now the "what if" demon is whispering in my ear and the cloudbank below me is drawing closer. I'd hoped that someday this terror would go away, but my counselor tells me that I'll probably always have an issue with medical tests. Again, not sure why I'm writing this. My fear is someone is going to read this and respond with "my uncle Saul thought he was okay too, and the pulse oximeter test revealed he had XXX!"

    Whew. Too many words and not enough sense. Oh well, that's me.

  2. #2
    Join Date
    May 2014
    Posts
    537

    Re: Reaching out, new for me -- dr. tests

    Hello!

    It’s great to have a place where you can confide your thoughts with people that can completely understand your irrational thoughts! I love this place because I often don’t get judged for the way I feel and most people are kind and don’t mind helping you out or giving that momentary reassurance. I’m going to do the same for you. Not just to brush you off or give you what you want but because I truly believe you’re okay! I’ve been there! I remember going through a horrible HIV scare while pregnant. Apparently being pregnant can set off that test and honestly it was pure horror. I had to go through multiple tests to prove that I didn’t have it. In the end I was fine and it was just pregnancy antibodies setting off the first part of the test but the second part was always negative. No matter how much my docs tried to tell me that it was okay and they were just doing the testing because of reassurance I couldn’t bring myself to believe them. I was in a monogamous marriage and getting HIV in anyway possible was impossible. But I imagined all the ways that I could have picked it up and didn’t believe anyone til I got a negative viral load test. Gosh did I feel silly for worrying then!

    But it was enough to scare me off all bloodwork. It’s been five years and I haven’t had a single test since, even though my doc has given me requisitions I have refused to have it done. The fear of getting a phone call terrifies me and then having to wait is even worse! But in the end it’s almost always okay. I can completely understand yours fears but at the end of the day pulse oximeters can be incredibly faulty and nurses and docs see this often.

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