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  • Patient Instincts: Do We Have Them?

    Posted by bailey-anne-vincent on March 10, 2021 at 8:32 am

    I wasn’t able to make it on the forum yesterday because of something going on with my back, and now, I can’t think of much to say because that’s rather so consuming. I hate that I’m writing about back pain deterring me from my purpose yet again, because if it feels like deja vu… well, it very much is!

    Unfortunately, what was going on with my back throughout 2020 (and I frequently wrote about here) is reoccurring yet again, and completely incapacitating me this week. I made the mistake of sneezing and… Game Over. My team saw my scans and heard that my left foot isn’t moving properly all over again (again, deja vu) and I meet with a surgeon tomorrow via telehealth to talk “The Plan”. We are worried about the exact same disc that had surgery just 5 months ago (but clearly not the right surgery for me) and another one much higher.

    I don’t know if my coughing has caused this to get worse or reoccur but… sneezing definitely didn’t help! And it’s hard to find a CF-er who can avoid sneezing and coughing, right?

    I am on a bit of an “I Told You So” tour, at least in my own home (so basically, it’s just me and my hermit crabs having this conversation), because I spent the last few months talking about weakness in my hands and pain in these places in my back. I even wrote about it here and said “I hope it’s not something more sinister like auto-immune”. I was told it likely wasn’t structural and had really convinced myself I was wrong… and now it turns out I was right. The weakness and pain I was reporting was from my spine and in the exact spaces I claimed (I realize Capital-G Gloat doesn’t look good on me, but give it the post, maybe?)

    So, here we are. I am not processing anything emotionally yet or even pouting. I am just reporting the fact that sometimes patients are right about things… and basically, that’s it.

    What is one time you knew something was off and were told it probably wasn’t, only for your instincts to be true?

    jenny-livingston replied 3 years ago 2 Members · 1 Reply
  • 1 Reply
  • jenny-livingston

    Member
    March 10, 2021 at 2:20 pm

    Two words: blood clots.

    I have a propensity for developing them, even when it sometimes doesn’t make sense. The first time we discovered clots, they were in my heart and lungs. Whether they were a result of my birth control (certain types can cause a pulmonary embolism) or my port itself, we’ll never know. But after that scary incident, I began developing clots each time I had a PICC line. The first time I suggested this, the attending physician probably thought I was crazy. After all, I’d never had a PICC associated clot before. How would I even know what they felt like, right?

    But sure enough, I’d developed a large clot along the catheter. Several months later, just 24 hours after getting another PICC line placed, I mentioned that I thought I had another clot. Again I was told that it wasn’t likely, but an ultrasound was ordered and there it was! This has happened a total of 4 times now. We’ve finally learned how to avoid it (which also means avoiding months of anticoagulation therapy after the fact) but my doctor has joked that I have a sixth sense that tells me the precise moment I’ve developed a clot.

    As you said, sometimes a patient just knows

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