Q is nearly four months into having BOB (Bag of Bile) and it has done what it was supposed to do – her itching has subsided from 24/7 disrupting her life with despair to typical itching and scratching relief. Her skin is still in a state of repair but it’s been miraculous.
As with most things on the chronic life-long illness roller coaster of life, there are negative and positive impacts to most treatments. The loss of half her bile (we know it’s half because we removed all bile for a week) with the “external partial bile diversion” has created some other problems that need managing. You’d be surprised what lab values are out of sync because of 2 cups of bile leaving the body in a non-traditional way. Bicarb, hydration, and more. Her skin is having a bit of an issue under the sticky wafer and we’re trying to figure out how to treat it and yet, cover it with adhesive.
I’m not sure yet if there is anything connected to the bile situation because I haven’t spoken with anyone yet, but testing comes, it always comes.
A few weeks ago the powers that be noticed Q’s creatinine inching back up to the high zone they do not like, so they ordered an ultrasound. We were able to schedule it in a couple of days and she was diagnosed with hydronephrosis. Hydronephrosis is described as the back-up of urine causing the kidney to swell.
Through the kidney team, the urologist ordered a couple of tests to determine what is causing the hydronephrosis. Through testing that lasted the better part of the day, we’ve learned there is some blockage. I saw the report early in the week, left a few messages and an email so I could get more information about the tests. I got an email through the health portal that said we needed to scheduled an appointment to go over the results.
That would have been helpful to know any other days than 10 days later. Perhaps when they ordered the tests. Or even when I left the frist message for the results. Today I got the email that said there was a video appointment opening on Monday afternoon, so there it is.
I think basically the tests said that the blockage from the deflux last year (July?) presisted and that the stent, while helpful to get her transplanted kidney unblocked and out of crisis failure, remained somewhat blocked and over time has caused her kidney to swell. I don’t honestly know everything it means and what they will do to reverse/help/stop it.
But it’s not good.
