June 10, 2010
During both of my last two visits at the Duke ALS Clinic I was told to consider having a PEG tube surgically placed in my upper stomach. Even though I am still capable of eating and swallowing my food and drink, they felt it would be precautionary measure for the future, if I got to the point that I could not swallow which lets pray that never happens.
Also, due to the fact that my oxygen/blood level is currently at 94 and my lungs/diaphragm are at 53% predicted, they felt I only had a window to get this procedure done. If I dropped too much lower they would not be able to perform this surgery. Also, they do not want me to lose much more weight.
After giving this much consideration I decided to have this done and I did so today. The placement of the PEG was fairly quick. I have a very sore throat and a little discomfort at the incision site, but am told that both will be healed in about 3-4 day’s.
Because they do not want me to lose much more weight, I am now able to supplement my meals with a can of the formula to make sure I am getting all of my nutrients and calories that I need to sustain my weight.
If the time comes that I will not be able to swallow and need the feeding tube for nourishment, I will have it in place. It will not increase the length of my life, but will continue to nourish my body and especially my brain. Candace Boyette from Duke ALS Clinic gave me a good example of this. She said, “Getting glucose or sugar to the brain is essential to prevent cell death. Like when Ghandi fasted to get his message across he had hallucinations, delusions, and change in personality (irritability and agitation). It takes oxygen and glucose for the brain to function correctly.”
Hey, I’m all for clear thinking, so I can keep all of you in line, if I need to. Ha!…and you all know I will…..