Never a dull moment.

Kerissa • February 14, 2015

Hi friends,

Just an update for you!  For those who don’t know, I had to go the ER yet again this week.  My PICC line site was red, hot, and swollen, and I was experiencing low grade fevers when my home health nurse visited last Thursday and when I saw my GI specialist this past Tuesday.  He feared a line infection and wanted it to get pulled.  So Wednesday I was told to go to the ER.  When the doctors and nurses know you, you’ve been there too often…… :/  They drew blood cultures and labs to check for infection and ordered an ultrasound to rule out clots in my upper arm.  And guess what—-a clot was found in my cephalic vein!  That’s one of the complications when you have a central line.  They admitted me overnight in the ER observation unit for IV fluids and potassium because my potassium levels were low.  They also pulled my line and started me on two heavy duty blood-thinners to prevent it from traveling to my lungs and causing more problems.  Yesterday morning, the PICC team came by to place a new line in my left arm.  I was also taught how to give myself anti-coagulant shots twice a day….not pleasant.  This certain drug burns horribly!

Today I had a follow-up with my cardiologist.  We discussed my recent heart echo results, and he is going to consult with another cardiologist because they found thickening of my aorta (that was a surprise because it wasn’t there on my two previous echos!).  Also, they found a mobile mass in my right atrium, but he thinks this is congenital and shouldn’t cause problems.  Still, that was another surprise since it wasn’t found there before!  I am a puzzle, and I keep my doctors on their toes. lol  My cardiologist is also going to get in touch with my GI specialist next week to see if more sodium can be added to my TPN because my high heart rates, dizziness, and heart fluttering has been getting worse.

Monday I have an appointment at the anti-coagulation clinic to get labs drawn and see the doctor there.  And Wednesday, I have surgery to get a central line placed in my chest!  They wanted to do this soon to prevent a clot from happening again…..but who knows, I’m not the typical patient.

It’s been crazy hectic, and my arm where the clot is still doesn’t feel well yet.  But I continue to trust the Lord and persevere!  He is good.

Thank you all for your love and prayers!

P.S. A famous mito specialist from Ohio came to speak at OHSU the same evening I was in the ER…..the ER docs were so kind to let me go to it since the lecture was literally just down the hall!  It was very informative.  I was able to ask the mito specialist about my mtDNA depletion results.  He looked over the report and told me that my depletion is 99% which is very high….no wonder my GI tract is so affected.  I really hope these results and the ones pending will help me be eligible for a future clinical trial!

My new PICC line right after it got placed
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
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- 
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.” ✨