A number of days have gone by since I last published to the blog. The reason is that I did not want to tempt fate. How so, I can now say that I have experienced a huge improvement over the last couple of days. Apart from the fact that I do not have much physical strength and that I still have occasional coughing/choking bouts when I take food orally, I feel much, much better and I feel that there is an improvement in allsorts of ways as each dat goes by.
I have had a number of questions about my feeding tube. I know that on occasion I have cursed the tube. It is not uncomfortable but gets in the way and is a general nuisance. In hindsight, I now realise that this simple little device has actually been a lifesaver. Credit must be given to Wikipaedia for the description of what a feeding tube is:-
A gastric feeding tube (or "G-tube," or "button") is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. The most common type is the percutaneous endoscopic gastrostomy (PEG) tube. It is placed endoscopically: the patient is sedated, and an endoscope is passed through the mouth and esophagus into the stomach. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.
Gastric tubes are suitable for long-term use; they last about six months, and can be replaced through an existing passage without an additional endoscopic procedure. The G-tube is useful where there is difficulty with swallowing because of neurologic or anatomic disorders (stroke, esophageal atresia, tracheoesophageal fistula), and to avoid the risk of aspiration pneumonia. It is also used when patients are malnourished and cannot take enough food by mouth to maintain their weight, such as with mitochondrial disease.
I know that what I have written over the last couple of weeks has helped at least one person to cope with and come to terms with this disease and it's treatment and I hope that many more will be helped by what I have written and will continue to write.
take care out there.