Fight for Quality of Life

When the surgeon stated that MALS surgery is technically an elective surgery, I thought he was joking. To me, there seems to be no other option. Simply put, I can’t live like this. To lift spirits, we go through pictures of the first 15 years of my life when I was healthy and truly living. My mom says I was a happy child, full of life and adventure…the pictures support that. I want to live, love, and thrive like that little girl again. 

Elective surgery is one scheduled in advance because it technically does not involve a medical emergency. They say MALS itself won’t kill someone, so I guess this is why it is put in the ‘elective bucket’. However, I would like to argue that the side effects of having severe MALS can end a person’s life early. 

Severe MALS patients often become malnourished and dehydrated due to the compression. These patients eventually require a feeding tube. Yet the use of the feeding tube doesn’t last forever as the visceral hyperalgesia can get worse and then the rate the patient is able to run their feeds slowly decreases. Sometimes this can lead to the patient relying on TPN for nutrition or a central line for hydration.

Many are on heavy-duty pain meds to mitigate the pain and this could also kill a patient. For those MALS patients who might have been in physical therapy, forget it…when one has severe MALS they don’t want to move. And, eventually, the intense pain limits the patient from talking and even taking deep breaths. Then to help with breathing the patient runs oxygen through the nose all day, which irritates and blisters the inside of the nose.

So, I am not feeling like this is so elective.  

Is it possible to be the girl in the picture again? I miss food. I crave the ability to drink water. My mouth is dry, lips are cracked. Dehydration is the norm. But even more, I miss the social aspect of eating. Celebrating birthdays with cake, sipping hot chocolate with friends in winter, and participating in extended family Thanksgiving dinners are all reasons why I choose this surgery. 

Life can be beautiful….it’s worth the fight for quality of life.