Mitochondrial disease appointment update 2018

Hi, friends, Last week, I unfortunately caught norovirus from my parents who caught it most likely from a wedding. 😞 All the vomiting caused dehydration, and my heart rate was high (up to 150 bpm). Every 30 minutes, I kept getting a notification on my Apple Watch saying that my heart rate was too high. Thankful I didn’t have to get admitted and could infuse the rest of my IV bags here at home. My neck is showing signs of weakness like after the time I got sick in Hawaii. 🥺 Really praying the muscles are just trying to recover from the vomiting/dry-heaving.. On top of that, the skin at my port site has sadly been breaking down over time. My dr. ordered a PICC line for me to let the port site heal. But the IR (interventional radiology) team said I need to have my port surgically removed because the site is “too exposed.” Definitely wasn’t expecting that! 😥 The IR team wants me to get a central line instead of another port, but I tried explaining to them that I’ve had sepsis too many times from multiple central lines. Plus, my quality of life is so much better with a port because I can shower when the needle is de-accessed. That’s just one of the reasons.. If I had a central line, I’d have to cover it and put tape all over which is not fun. I have a virtual appointment with someone on the IR team this coming Tuesday. Could you please pray the radiologist will be understanding, compassionate, and willing for me to have another port placed? I know this is in God’s hands regardless of the outcome. 💚 Surgery to remove my port and place something new (whether it’s a port or central line) is this coming Wednesday.. We’ll know the time the day before.. I’ve been reading a memoir by a young mother named Amber Emily Smith who tragically lost her 3-year old son to drowning in their family’s pool. In her book, she shared the story of the poet Annie Johnson Flint who developed a severe arthritis that left her hands disfigured and also caused her unable to walk. It was in the midst of her suffering that she became a poet. I’m sure many of you have read this poem before, but it’s such an encouraging one, and I hope it fills your heart with hope. ❤️ “God hath not promised smooth roads and wise, Swift, easy travel, needing no guide; Never a mountain rocky and steep, Never a river turbid and deep. But God hath promised strength for the day, Rest for the labor, light for the way, Grace for the trials, help from above, Unfailing sympathy, undying love.”

Hi, friends, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹