March update: So much going on

Hi everyone,
Just a few things to report today…

My liver enzymes encountered a slight bump in my labs the other week.  Why do we care?  High enzymes can indicate rejection.  The team raised my Prograf (unfortunately) by 0.5mg twice/day to a total of 2mg twice/day.  As a refresher, Prograf is an immunosuppressant anti-rejection medication, and it is no fun because it causes tremors, hair loss, fatigue, and I’m starting to think kidney damage.  I’ve been reading around the internet and journals and it’s my personal opinion that over time, it damages the kidneys.  My last CT scans revealed a sub-centimeter cyst on one of my kidneys.  The kidney transplant surgeon said it was benign, but reading stories and other information is starting to freak me out.  I just try to keep my mind from going there.  I’ll get my labs redrawn tomorrow, and hopefully the additional Prograf has corrected whatever was going on.

Back therapy and treatment is still going on… I can’t say it’s going well, but I can’t say it’s going poorly either.  My back is having a hard time keeping it’s correct position – even with the SI lock belt/brace – but the last 2 weeks in a row I have tripped down the stairs.  (Really random, right?)  I currently have a virus, so I missed my appointment this week, but hopefully my osteomanipulative doctor can re-align me next week, and hopefully my back can keep its position for a week.  It’s a lot of waiting and hoping.  The chronic pain is miserable right now, but life does’t stop to let pain take its toll, so I’m just continuing on like I always do.

Regarding the esophageal dilation I had last month… it was unsuccessful.  I still choke on thick foods, and my gastroenterologist said my esophagus was dilated to 18mm which is supposedly a wide amount.  You can’t argue with choking though, so she’s going to have them repeat the procedure, this time dilating to 20mm.  That should take place in a week or two.  Hopefully it works.  I have noticed an improvement since last time, so I’m pretty sure one more time will take care of things.

I saw my pain management doctor today, and I am so frustrated.  We are completely changing my drug regimen since the Lyrica (daily fibromyalgia medication) isn’t controlling my pain, and it along with another medication are big, red flags in trying to figure out where my recent weight gain is coming from.  We discontinued a few meds today, decreased some, increased others, and I feel like we are  just shooting in the dark right now.  I’m so thankful for my pain management team, though – I feel like they’re on my side in trying to curtail the constant back/neck/everywhere pain.  Laying on the couch watching movies every night is not how I want to be spending my life right now, and they “get” that.

Your prayers would be so appreciated in this journey against increased liver enzymes, choking, and chronic pain.  Some days I feel like being a patient is my full time job when all I dream of is going back to school and wrapping things up.

I thank God every day that HE has a plan behind all of this.

Love to you all,
Amanda 

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