10 Year Anniversary

How has it already been almost 4 months since I last blogged??

After that surgery, my foot was never the same, and the pain was unbearable—even bedsheets caused severe pain.   My foot was swollen, turned purple/green, and was so very cold.   My pediatrician referred me to the OHSU pain center (I never knew there was such a thing as a pain clinic!).   In March 2011, I met my amazing pain doctor (my favorite doctor to this day who now works at the University of Washington Center for Pain Relief) and was diagnosed with Complex Regional Pain Syndrome.   Despite intensive physical therapy, a “desensitization” program, mirror therapy, and nerve blocks, the CRPS traveled to my left foot and later my left hand.   My pain dr. was convinced that some underlying disease was causing this.   In September 2011, I had surgery to have a spinal cord stimulator (SCS) implanted in my back.   That blocked the nerve pain in my feet and helped so much.

In 2012, I started experiencing more symptoms and was diagnosed with Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.   Then, in September of that year, my left eye started drooping and I also began experiencing left-sided weakness, headaches, fatigue, etc.   I went to the ER 2 days in a row and was later admitted for 9 days.   I was poked and prodded and had 4 CT scans, electromyograms, a spinal tap, and much more.   After ruling out stroke, MS, myasthenia gravis, and other diseases, they still couldn’t figure out what was going on.   My neurologist really wanted extensive MRIs done of my brain and whole spine, but my spinal cord stimulator was not MRI-compatible.   It was a sad day when I had to have another surgery to have my SCS removed.   I had that 4 hour MRI in December, and they came back normal.   Yes, I was thankful nothing like a brain tumor was found, but I was broken-hearted that we still didn’t have any answers.

In April 2013, my parents, sis, and I traveled to Cincinnati Children’s Hospital.   I had many more procedures done (I won’t go into detail), and the genetics team suspected I could have a mitochondrial disorder.   I had genetic testing done, and while waiting for those to come back, they also referred me to a mitochondrial specialist (he has studied mitochondrial diseases for more than 40 years!) in San Diego.   Later in 2013, I started sleeping more than 12 hours a day (many days, I wouldn’t wake up until 3:30-4 PM) and also experienced GI dysmotility/gastroparesis.

In early 2014, I started losing weight, so I had to get a nasal-jejunal (NJ) feeding tube placed.   In June, I was finally able to see my mitochondrial specialist in San Diego.   He ordered much more genetic testing, and I also had surgery for my first muscle biopsy.   My gastroparesis continued to progress, and I was mainly eating baby food pouches, soup, Ensure drinks, etc.   In August, I had surgery to get a jejunostomy feeding tube placed in my abdomen because the NJ tube really irritated my esophagus.   But, a couple months later, I started not tolerating my tube feeds, and my stomach would get distended with nausea/vomiting.   As the months passed, my weight dropped down to 77 pounds.   I exhausted all motility treatments, and there was nothing left but to start IV nutrition (TPN) which is always last resort because of the risks/complications that can occur.   I was admitted to the hospital to start TPN the day after Christmas 2014.

In January 2015, we finally got my muscle biopsy results back, and it showed that I have a pretty significant mitochondrial DNA depletion.   My mito specialist diagnosed me with “Mitochondrial DNA Depletion Syndrome with multi-organ involvement.”   In February, I developed my first blood clot in my PICC line, so my line was removed and I had surgery to get a groshong central line placed in my chest.   At the end of 2015, my liver enzymes started sky-rocketing, and my GI dr. felt so sure that I couldn’t have another genetic disorder, but to make sure, I had a liver biopsy to check for Wilson’s Disease.   Well, to his great surprise, the biopsy showed that I had an enormous amount of copper in my liver.   So I was diagnosed with yet another disease.   I got acute hepatitis and felt so ill from it.   *To this day, I have to take a chelating medication to get rid of the copper in my body.*   In December, I was also experiencing terrible aching back pain and malaise.

So, soon after the new year in 2016, I went to the ER, and the doctors found out that my blood magnesium level was really low.   I was referred to a nephrologist (kidney dr.) and was diagnosed with renal magnesium wasting.   My kidneys just don’t hold onto magnesium (this can be seen with mito).   You know how some people take a magnesium supplement which is usually 150-300 milligrams?   Well, I have to receive 8 GRAMS of IV magnesium every single day.   In March, I got sepsis (a horrible experience) for the first time from a central line-associated bloodstream infection (CLABSI).   I had to have another surgery to remove the infected line and place a new one.   I can’t remember the exact date, but in 2016, I also started experiencing hives, terrible mouth sores, itching all over, etc.   I was diagnosed by an immunologist with yet another condition—Mast Cell Activation.   That year, I also tore my left hip labrum (due to my joints being so hyper-mobile from Ehlers-Danlos Syndrome), so in August, I had to have surgery to get that repaired.   My orthopedic surgeon  d id a 2nd muscle biopsy as well to check up on the mitochondrial depletion.   At the end of the year, I came down with a virus and a terrible cough that lasted more than 4 months.   The cough was so violent that I fractured a rib.   My PCP ordered a DEXA bone scan, and we found out that I have osteopenia.

In January 2017, I got a DVT (deep vein thrombosis) in my chest.   I also had surgery to remove my central line and get a port placed.   About a month or so before this, I experienced a tunneled central line infection (different from a CLABSI and not as bad), so my GI dr. wanted me to get a port placed since ports are “supposed” to not get infected as much as lines. Well, I never follow protocol ( ), and I developed sepsis at the end of June, just 5 months after the port placement.   So once again, I had surgery (this time awake ) to remove my port, and a few days later, I had another surgery to place a new hickman central line..

In early 2018, I tore my right hip labrum, so in August, I had yet another surgery to repair it.   Most of you know what later happened…   I was doing completely fine medically after that, but about 24 hours later, I suddenly went into septic shock and the rapid response team had to be called because I had a fever and my blood pressure was dangerously low.   So low that I had to be transferred to the ICU to receive norepinephrine, oxygen, and other treatments.   I was pretty incoherent, so I don’t remember a whole lot.   I just know that my kidneys stopped working well, my lungs partially collapsed, and I got ischemic hepatitis.   It was so scary and traumatic.

At the end of January 2019, I got sepsis for the 3rd time, but this time, they couldn’t find the cause (which can sometimes happen).   That 11 day hospital stay was incredibly hard, and I cried so much from all of the severe pain and discomfort.   I won’t go into detail, though, because this is already super long.   *I do want to share that I haven’t had sepsis for 1 and a 1/2 years now!   Praise the Lord!! *   Later that year, we found out my osteopenia worsened, and my endocrinologist also diagnosed me with hypoparathyroidism, often seen with Wilson’s Disease and mito.   Sadly, the vascular malformation in the bottom of my right foot also grew back which can happen because it’s genetic.

On January 15, 2020, I had surgery to have the vascular malformation removed because it was causing so much pain, and I couldn’t walk well with it.   Just 1 week later, my central line got a big hole in it, so I had to have another surgery as soon as possible to get it replaced, even though I was still recovering from the foot surgery.   Right after that surgery, I developed an awful GI infection.   All the post-op pain, my regular chronic pain, and abdominal pain from the infection was so horrible, and I was constantly in tears.

These past 10 years, you have all walked beside me on this journey, and for that, I’m SO grateful.   The Lord has blessed me with the best family and friends!   So, here’s to the next 10 years..  With God’s help, I pray that I will keep being faithful to this calling.   God is good.