Navigating uncharted waters

If I was not a duck out of water before with having Mitochondrial Disease, now I am definitely in unfamiliar territory with a tracheostomy. Trachs are not very common in Mitochondrial Disease, and those who receive them are usually babies and toddlers with a very rapidly progressing form of the disease. These precious youngsters usually die by their fifth birthday. Trachs in adults are extremely rare. In a Mitochondrial Disease Facebook group with over 10,000 members, only three adults have tracheostomies. Why so few? Mitochondrial Disease in adults is usually a slow progressing, chronic disease. It causes lots of aches, pains and diseased organs. The most common cause of death in adults with Mitochondrial Disease is heart failure, heart attack, stroke and seizure. Respiratory failure is a very rare complication of the disease.

Perhaps, the lack of adults with Mitochondrial Disease and respiratory failure has been an incredible blessing. Since I have had the tracheostomy surgery, I have been reading lots of websites for people with ALS, which has the best information about respiratory failure and neuromuscular disease. As I have been reading the protocol for people with ALS, when they are in respiratory failure with high carbon dioxide levels (the state I was in before having the tracheostomy surgery), the ALS patient is given a choice: tracheostomy or cemetery. The person either has to agree to have a tracheostomy surgery, or the doctor sends the ALS patient home armed with high doses of morphine. (The morphine is given to lessen the suffering as the person dies from high carbon dioxide levels.) It was a bit frightening reading this protocol. I am glad God never presented me with this decision to make. Every doctor I have ever seen has only given me one option: You need a tracheostomy!!!

Now, I must look to the future. I must chart my course through these unfamiliar waters. I must be the explorer seeking the best way to manage my health. I must come to terms with the fact that I will have a tracheostomy for the rest of my life, and I will also need a ventilator to breathe. For the rest of my life...I wonder how long that will be? Thankfully, there are no life expectancy statistics for adults with Mitochondrial Disease and tracheostomies. Instead, I will rejoice every day that God has given me the opportunity to live another day--another day to breathe, another day to see God's abundant blessings, another day to worship and praise His name. "I will sing onto the LORD as long as Iive; I will sing praise onto my God while I have my being" (Psalm 104:33).