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 Post subject: Update update update!
PostPosted: Wed Apr 16, 2025 3:23 pm 
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Joined: Fri Feb 20, 2015 7:49 pm
Posts: 1440
Location: washington, dc
As usual, life has been a whirlwind.

I am constantly fighting infections with this spc. I am sick literally every 2-3 weeks. I have an appointment with infectious disease monday to see if they can help. My urologist has been an absolute nightmare. They put this thing in and aftercare is pretty nonexistent. I'm finding a new urologist.

I still have to wear diapers because if I have a bladder spasm I pee through my urethra. Not uncommon.

After fighting with my insurance for YEARS they are finally covering supplies. You can see on here how long I have been fighting. With my severe skin issues, cloth backed diapers make me break out like crazy. Usually its the other way around, but of course my body is weird.

They approved tranquility atns, which used to not work with absorbency, but now with different issues, they are fine.

With all the medical issues, of course more has to pop up! I went in to get a clearance for a surgery I need, and found out I have a genetic heart condition. So now a new specialist, cardiology several tests have to be run before they will consider clearing me for surgery.

I am greatful, though, because my dr is leaving and I saw someone new. She caught the heart thing. I have had abnormal ekgs before but she is the first person to name it. And said the magic word to get supplies approved.

Pushing forward....


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PostPosted: Thu Apr 17, 2025 1:09 pm 
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Joined: Sat Mar 29, 2014 11:45 am
Posts: 1894
On one hand, I'm glad you have found an effective, empathetic doctor. However, a genetic cardiac disease is serious indeed. Brace yourself for several invasive and embarrassing exams. Some are easy on the patient; others are more punishing. I hope your surgery will proceed without incident, and that your nurses and cardiac physical therapists will do their part for you. Keep us informed.


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