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@JoParkerBear@beige.party

2026-06-27 16:39 UTC

CW: kinda gross medical stuff I see it’s been a week since I last said anything. I guess I will go ahead and be more open about what’s been going on. I was hoping to wait until I had something more definitive to say, but this is dragging out at a much slower pace than I had hoped. While I can’t say this yet with 100% certainty, I have every reason to believe, based upon what doctors have said, alarming test results, and evidence I can see daily with my own eyes, that my left kidney is essentially worthless and will eventually be removed — hopefully, sooner rather than later, so I can at least begin to recover. If by some miracle I am wrong (and I would really love to be wrong), the other option would be reconstructive surgery. In order to qualify, my kidney would need to be functioning at 20%. Based on a recent renal scan, it appears to be functioning at just under 4%. However, I am still awaiting results from my most recent CT scan. I know there is a blockage, as well as a large hematoma. I am not a doctor — maybe there is some unknown hidden door #3 surgical option that could fix it all. Hopefully, I will have more conclusive answers this coming week, but I am dealing with a really frustrating, understaffed office of urologists. As for how I am doing now, I have had a nephrostomy tube for over two weeks (a tube from my left kidney that comes out of my back, placed after a small surgical procedure). It was put there initially because my kidney was greatly enlarged, which had everyone at the hospital greatly concerned at the time. Now it is back to normal size. As for the tube itself, if I were doing even somewhat well, there should be at least some urine coming out of it. Instead, there has been nothing but blood, a not insignificant amount of blood, almost nonstop, for two weeks — some days worse than others. Today has been a slowish day for blood loss so far. I have been back to the hospital twice, they view my condition as stable, and I feel almost okay sometimes considering. But it has been a significant amount of blood loss over time. My worst symptoms are nausea and dizziness. Sometimes pain as well (at times, a lot of pain). It all comes and goes, and I experience various symptoms in seemingly random combos. One day last week, I felt fine all day long — it was awesome (if somewhat perplexing). I am scared of losing my kidney, but I am so tired of all of it. I feel exhausted, short of breath, shitty, and I am ready for any resolution at this point. Why did my kidney up and quit? Not sure; there are a couple of suspected reasons. So maybe you can see why I can’t keep up with the daily JoWordle posting right now. My sleep schedule is all over the place, I never know how I will feel hour to hour — you get it. Don’t worry about me, please. I am going to be fine. It is just going to take some time — too much time if you ask me, but I am trying to be patient. Love you all. 💕

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