Muscle biopsy update and other news..

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.. :P  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! :)

More Setbacks.

Last Monday, we received some unfortunate news. :(  I heard back from the mito coordinator down in San Diego, and she explained that the mtDNA sequencing (one of the numerous tests that was supposed to be done on my muscle) at the lab in Georgia was not completed.  We're not sure if it was a new lab person who made the mistake or something else, but somehow, the muscle was sent to the lab in the wrong solution, making it completely untestable. :(  What's worse is that there is no extra muscle left (even tho' several pieces were biospied....some was sent to New York, etc.).  We're now waiting to hear from the dr. about all this and what needs to be done.  Worst case scenario is I'll have to get yet another muscle biopsy surgery..  As you can imagine, this is discouraging news for all of us to hear, but I'm trusting in the Lord's sovereignty!  He is faithful.  This is just yet another test of patience. :)  Hopefully we hear something by next week, and I will keep you posted!

This past Monday, I got my feeding tube changed to a low-profile "button"!  It was a very unpleasant and painful procedure....basically, they pull the long tube all the way out of the stoma (hole) in my intestines and then "stuff" the new tube back into the hole. ;)  But it was definitely worth the pain because this new button is so easy to manage and handle!  That, the new tube feeds formula, and my feeding pump switch to a lighter one is all so nice!  Here are some pictures. :)

This is a j-tube pad around my mic-key button.  Many people sew these---they're super cute and comfy!  And it keeps the granulation tissue/leakage at bay!

hooked up to tube feeds :)

And this is my new enteralite infinity pump!

Yesterday, I had a lidocaine and magnesium infusion for the CRPS pain.  We weren't expecting any surprises because I've had both before, but you know me... ;)  I have to keep things exciting!  Long story short, things went terribly and involved very high heart rates, slurred speech (that was scary), head-throbbing, and a feeling of passing out twice.  The pain team had to quickly give me a bag of IV fluids and stop all the medication drips.  So I didn't really receive a good infusion... :/

If my insurance approves it, my pain dr. will be starting me on another pain medication.

In addition to all this, I've been dealing with a huge and painful mouth ulcer.  I haven't been able to eat much at all!  It's hard to talk, and this ulcer is my biggest one yet. :(  I've been getting mouth ulcers regularly for a long time now, so I have to see a dermatologist who specializes in oral mucosal disorders because we're wondering if something else is going on.

This has been a challenging week, but I continue to press on!  To close, I want to share this beautiful quote that I read just today. :)

"Suffering is not the absence of goodness, it is not the absence of beauty, but perhaps it can be the place where true beauty can be known" ~ Kara Tippetts (a sister-in-Christ who recently wrote a book about her journey battling stage 4 cancer....she knows all about suffering!)