My Current Life with Mito

Since Mitochondrial Disease is a constantly changing disease, I thought I would give an update to a post I did a year ago about my life with Mitochondrial Disease.

This last year, my mito has progressed into my respiratory muscles. As my respiratory muscles became weak, my ability to inhale became impaired. Not being able to properly inhale lead to not being able to fully exhale, which caused carbon dioxide to build up in my body. I was started on non-invasive ventilation. High pressure air was forced into my lungs, which caused my lungs to expand. This allowed my body to more fully exhale carbon dioxide. As the disease continued to weaken my respiratory muscles, higher and higher pressures were needed to force my lungs to inhale. After using non-invasive ventilation for five months and using it 24/7, my respiratory muscles became too weak; my carbon dioxide levels soared to dangerously high levels. As a last resort, I underwent surgery to have a trachesotmy tube placed and was started on invasive ventilation.

I wish I could say getting a tracheostomy solved all my breathing problems...it did not! Shortly after getting the tracheostomy tube, I started having trouble breathing. My trachea was very sore, I had bad coughing spells and I was constantly short of breath. Over the course of several weeks, I finally figured out my body was reacting to the silicone in my tracheostomy tube. A few other trach tubes have tried, but they are all made of either silicone or vinyl. I have a strong allergic reaction to vinyl; so this too, has not been a plausible option.

Now, I have been in a holding pattern. No one knows what to do. This seems so apropos. Mitochondrial Disease is a complex disease, affecting almost every part of my body. There is no cure for the disease...and for the moment, there is no solution to my tracheostomy tube sensitivity. Thankfully, while my body is busy rejecting the tracheostomy tube in my throat, the disease seems to have stalled for the moment in certain parts of my body. I have had only a few minor pancreatitis attacks and bowel obstructions this last year. My eye muscles seem to have stabilized. I have not had any stroke-like episodes. I have had few seizure-like episodes. Several things have worsened--fatigue, shortness of breath, muscle pain and tremors, insomnia, migraines, and breaking out in hives.

For now, I spend most of my time in bed. I leave the house twice a week--to go to Bible study and to go to church. I yearn for the day in which I have more energy...but for now, I must take encouragement from every day I am not hospitalized. Although spending my days in bed is not a glamorous lifestyle, I am very grateful God gives me the energy to read His Word and to develop a closer relationship with Him. He is my refuge in times of trouble. "The LORD is my rock and my fortress and my deliverer, My God, my strength, in whom I take refuge; my shield and the horn of my salvation, my stronghold" (Psalm 18:2).