Quick Update (about surgery tomorrow on 1/15) and Prayer Requests

Kerissa • January 15, 2020

Hi, friends!

My surgery (to replace my j-tube and also remove the vascular malformation in the bottom of my right foot) was originally scheduled to be done outpatient at the O.R. in the OHSU Center for Health and Healing at the South Waterfront.

But, I saw the “pre-op medicine” doctor last week, and after the appointment, she got in touch with the head of Anesthesiology and my surgeon.  Because I went into septic shock and had to go to ICU about 12 hours after my last surgery in 2018, they all agreed that this surgery should be done at the South O.R. up at the main OHSU hospital and then admit me afterwards for observation.

I hope and pray that I don’t go into shock again, but I’m thankful for all of my doctors who are taking these precautions.😊❤

I saw my pain dr. yesterday, and she set up a good plan and list of recommendations for the anesthesiology team.  She wants them to do a popliteal nerve block before the surgery which will numb the leg from the knee down.  In addition, she would like them to leave this catheter in my leg so that I can go home with the nerve blocking medicine continuously going into my leg for up to 3 days.  Their hope with this is that it will help prevent a Complex Regional Pain Syndrome flare-up.

I have to get to the hospital at 12:30 pm, and surgery is scheduled for 3:00 pm.  Even though this isn’t a big surgery, I have to go under general anesthesia and be intubated because of my central/obstructive apnea.

Would so appreciate your prayers that:

1. the GI team that is changing my j-tube after I’m under anesthesia can also figure out why a specific area near my tube has been so painful lately and why (TMI) it’s been oozing some yellowish-type pus.😣 So we’re not sure if there’s a tube infection brewing.

2. my surgeon can remove the whole mass easily and that it doesn’t grow back again (I had this exact mass that I was born with removed in 2010, but it grew back in 2019🙁).

3. my blood pressure, specifically, can stay up at a good range overnight without any issues.  I had dangerously low blood pressure in 2018, and that is why my body went into shock.

4. I will have the stamina and endurance to use crutches (I won’t be able to bear any weight on the bottom of my foot for 4 weeks).  It’s always hard for me to use crutches because I have weakness and fatigue from the mitochondrial disease.  Thankfully, I have my wheelchair for long distances whenever I go out, but I’ll have to use crutches in the house since our house isn’t wheelchair-friendly.

5. once the nerve block wears off and we pull the catheter out at home, that I will still have good post-op pain control so that I won’t have a CRPS flare-up in my foot.

6. I can be transferred to a private room once admitted and that I won’t have to share one with a stranger.  It’s hard enough getting sleep in the hospital, and it’s even harder to share a room with someone.😔

Anyways, I think that is all!😉 Thank you soo much for praying for me!  I am so very grateful for all of you!!  As the verse that I lettered at the top of this post says, I know that the Lord is with me and will be there for me every step of the way.❤

I’ve had so many surgeries and procedures the past 10 years, and as a result of that, I have scars all over my body.  But then I think of these lyrics by Matt Redman which are so encouraging!

Our scars are a sign
Of grace in our lives
Oh Father, how you brought us through
When deep were the wounds
And dark was the night
The promise of your love you proved
Now every battle still to come
Let this be our song
It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul
By Kerissa Lee February 27, 2025
Hi, friends, I went to see my neuromuscular neurologist in Seattle last month, and since there are no neuromuscular specialists here in Oregon willing to see me, he kindly placed a referral for me to see a neurologist he trained who practices in Vancouver, WA! That appointment was originally scheduled for late April, but this new doctor moved it way up, and I was able to see him at the end of January! 😊 I’m so grateful for him, and he seems knowledgeable about mito. He told us that I “am easily the most complex patient he has ever seen.” 😥 I had to get a very painful test completed called an EMG (electromygraphy). It involves having big needles (larger/thicker than acupuncture needles) placed and pushed repeatedly into my neck and shoulder muscles. 😢 Hurt so bad!! I’ve had this done more than once on both legs, but it was much more painful on the neck! He wanted this test to check for active myositis since my MRI was inconclusive. Well, the results show that this progressive neck weakness is due to mitochondrial disease progression, and not from myositis. Whenever I have a “mito crash,” I’m usually able to slowly bounce back afterwards with time. But since I’m not recovering, he explained there’s degeneration going on and that my mitochondria are dying. That was hard to hear. 😢 We may have an idea why my condition is worsening quickly.. I received results from an extensive autoimmune panel which shows that 2 labs came back abnormal for a potential lupus diagnosis. We’re not positive I have it as I need more tests done, but my neurologist said that could definitely be what’s causing this mito progression. I have to see rheumatology now, but unfortunately, OHSU denied to see me. In my previous post, I mentioned that my pain doctor referred me to palliative care. Well, they, too, turned me down…. It’s just hard to fathom that multiple specialties at THE top hospital in Oregon won’t see me because I’m too complex…it’s so isolating and lonely. 🥺 Since my PCP has a new baby girl and is out on leave for 2 months again, I’m so grateful for my GI specialist’s help—it was kind of him to place a referral for me to see a rheumatologist at Providence. That appointment is in April. Please pray my whole medical team will be able to find out the cause of why I have harmful antibodies in my blood. It has now been 4 1/2 months since this all started. Time seems to crawl, yet at the same time, pass by quickly. My mitochondrial symptoms continue to worsen. For example, if I have a virtual visit with one of my doctors, just lying in my recliner and talking to them for 20 minutes causes horrible nystagmus afterwords. 😭 If it’s true there’s something autoimmune going on like lupus, it’s using up all the limited energy I have.. 😔 Could you also pray that the mitochondrial disease progression will slow down? I wanted to share an answer to prayer—you may recall I posted last month that my Seattle neurologist sent a new referral for me to see my mitochondrial specialist in San Diego as it’s been 4 years since I last saw him. Well, even though he’s semi-retired, I’m so happy to say that he accepted me which is a blessing from God! Isn’t that so wonderful? 🥹 He’s booked out ‘til September! But I’m not physically well enough to see him now anyways, so we’re praying my health will show some improvement 7+ months from now and I can travel then.. The Lord recently led me to The Tapestry poem written by Corrie Ten Boom. If you aren’t familiar with her, she was a faithful Christian during World War 2 who survived Auschwitz and the holocaust! You may have read this poem before, but knowing her testimony and how she had to go through extremely hard trials makes The Tapestry even more meaningful/impactful. ❤️ She is an example to me, and I hope this is an encouragement to you as well: “My life is but a weaving Between my God and me. I cannot choose the colors He weaveth steadily. Oft’ times He weaveth sorrow; And I in foolish pride Forget He sees the upper And I the underside. Not ‘til the loom is silent And the shuttles cease to fly Will God unroll the canvas And reveal the reason why. The dark threads are as needful In the weaver’s skillful hand As the threads of gold and silver In the pattern He has planned. He knows, He loves, He cares; Nothing this truth can dim. He gives the very best to those Who leave the choice to Him.” -Corrie Ten Boom
By Kerissa Lee January 21, 2025
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 😢 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. 😢I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. 🥺 I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable. I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th.. I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️ Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. 😥 Thank you so much for praying for me all these years. ❤️
By Kerissa Lee December 13, 2024
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
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