Muscle biopsy update and other news..

Kerissa • October 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!

May update (and sneak peek!)

By Kerissa Lee • May 23, 2025
How unspeakably wonderful to know that all our concerns are held in hands that bled for us. -John Newton

New Struggles

By Kerissa Lee • April 30, 2025
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." -John 16:33- 

More difficult news..

By Kerissa Lee • April 9, 2025
Dear friends, I’d really appreciate your continued prayers. 🥺 Thank you for being on this journey with me through the good and bad. ❤️ Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). 🥺 This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️ What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :( My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. 🥺 I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis. The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. 😥 If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting.. I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon. Just finished a virtual follow-up with another one of my amazing doctors this afternoon. 💜 She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! 🥲 I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%.. I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands. I’m thankful for God’s promises in Romans 8:28–“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ✨