THIS IS MY STORY . . .

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Oct 24, 2014

Hello everyone!

The mito coordinator down in San Diego was finally able to speak with my mito dr., and he told her he’s almost positive there’s more muscle.  So she’s going to look once more, but in the meantime, my appointment that was scheduled with him in November has been postponed…we should hear more soon when that new date will be.  But whatever the outcome, whether there’s more muscle or not, I trust the Lord completely. 🙂  If I do have to have another muscle biopsy surgery, I’m going to ask my pain doc if I can have my ears pierced while under anesthesia.  No joke. 😉  Because I have Complex Regional Pain Syndrome and any type of trauma can cause a nervous system flare-up, getting ears pierced under general anesthesia would be ideal! 😉  So maybe this muscle-biopsy-put-in-the-wrong-solution is a blessing in disguise!  Having a jewelry etsy shop and making earrings all the time makes me want to have pierced ears. 🙂

Last Wednesday, my GI surgeon had to get me in because I’ve been having raw tissue growth near my j-tube.  She had to use silver nitrate to chemically burn off the granulation tissue!  Hopefully that did the trick, but she said it may need additional treatments.

I mentioned in previous posts how my neurogenic bladder has been getting worse (my nervous system is not sending signals to my bladder and this could eventually cause kidney death).  Well, this morning, I saw the neuro-urologist.  She’s excellent and so nice which I’m very thankful for. 🙂  And she spent more than an hour with us!  Next month, I have to undergo a urodynamics test to check muscle strength, pressures, etc., and in her own words, she said it’s very unpleasant.  I have to be awake, too.  It involves catheters and having more things stuck inside of me.. 😛  She also wants me to start a medication, and all this is very important to do to prevent kidney damage.  I have to get permission from cardiology first since the medication lowers blood pressure (I already have low blood pressure).

So she’s very glad I see cardiology tomorrow!  And I am, too, because my high heart rates have been getting worse.. :/

I will keep all of you posted!  Thank you for checking in and praying for me! 🙂

Post written byKerissa

This post has 2 comments

  • That test is AWFUL! Abby had her muscle biopsy (which was open) wide awake in office and she said it was a cake walk compared to the urology testing. I was with her and it was dreadful. So very sorry you have to do it.

    Abby has bladder and kidney issues. The ACE inhibitor is commonly given to reduce Proteinuria from the kidneys. Though Abby cannot take it. If there is no kidney scarring/damage/issues then an ACE won't be necessary. Hoping they find some muscle and I think it is brilliant to get your ears pierced at the same time if they have to redo your biopsy! 🙂

  • Oh no, that's not good! :/ I really hope I do okay with it! Has abby had extensive manometry testing? I had that done last december, and it was horrible because of the severe intestinal cramping. So I'm hoping the urodynamics won't be unbearable?

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