Recently, I had a new durable medical equipment (DME) company come to change over my services. The current company I have provides medical supplies for ventilators; however, they have very little knowledge about neuromuscular disease (NMD). The new DME company provides services only to patients with NMDs. This new company understands the needs of folks with NMD and tries hard to provide the best support for their patients. Encouraged by their knowledge about NMDs, I was excited to switch companies.
As the man from the DME company was talking to me about the ventilator and the system he would be renting me, he made the comment, "You didn't need to get a trach. I could have managed you by using non-invasive ventilation." I was a bit stunned by his boast. I have done extensive research on non-invasive ventilation and the proper settings to use. I tested all sorts of settings on my machine, trying to find the best relief from my failing respiratory muscles. Nothing worked. As I probed a bit into this man's remarks, I discovered his fatal error. He assumed because I still retained some muscle strength in my arms and legs, my respiratory muscles were not very weak. I wish I would have had the energy to explain to this man why he was very wrong in his assumption.
Mitochondrial Disease selectively attacks one group of muscles or one organ system. The disease can attack and attack and attack the organ system until it has failed or is extremely weak. The disease does not progress in an orderly fashion like many other NMDs. Most NMDs affect all other systems--speech, swallowing, muscle strength, coordination, etc.--and lastly affects the respiratory muscles. Most folks with NMDs who get trachs are paralyzed or have so very little muscle coordination that they rely 100% on others to care for them. Many doctors unfamiliar with the randomness of Mitochondrial Disease mistakenly believe they can manage Mitochondrial disease patients using only non-invasive ventilation because the patients are usually still able to speak, swallow, and retain strength and coordination in their arms and legs. The doctors often do not recognize the severity of the respiratory muscle weakness. Unfortunately, this belief is often fatal. I have had a couple friends with Mitochondrial Disease and respiratory failure die because their doctors did feel they needed a tracheostomy. One doctor remarked, "I do not preform tracheostomies on my patients until they lose the ability to swallow." Unfortunately, many with Mitochondrial Disease and respiratory failure die while still maintaining the ability to swallow.
After the DME man left, I was stewing in his comment about me not needing a tracheostomy. Was I imagining the vast improvements I have seen with the trach--the abundant sleep I am now able to get, the increase in energy I now have, being able to eat and drink and talk while the vent forces air into my lungs, and not feeling as though I am fighting for each breath and fighting to live? I discussed this man's comments with my mom. And like a warm embrace, she comforted me with her words of wisdom. "How many patients with Mitochiondrial Disese has the DME company assisted? Did you not see the incredible concern on your pulmonologist's face when you said you would wait to get a trach? He was scared if you waited you would die. Do you trust this guy from the DME over your doctor?" Well, when she put it that way, why was I doubting my doctor and his extensive medical career? My doctor believed I would die without a trach. Whose opinion is more important, someone with extensive medical training and a very long medical career or a man who services ventilators? Praise be to God for my mom! When uncertainty strikes, she makes everything clear.
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