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“I have had very few issues with my MiniONE® button and would recommend this low profile button to anyone!”
I’ve had more than one go at adjusting to life on enteral nutrition. I want to share with people that regardless of all the uphill battles we face, there is light at the end of the tunnel with support from those around you! You have to stay strong in order to move forward.
My journey towards enteral nutrition dependency began in 2000, when I was diagnosed with stage IV poorly differentiated squamous cell carcinoma tonsil cancer with metastasis to the lymph nodes, a malignant tumor found under the left tonsil. Between 2000 and 2007 I endured many sessions of radiation therapy as the cancer came and went and even spread to both the tenth thoracic vertebrae and the fourth right rib. While undergoing my treatments, a feeding tube was necessary to provide enough nourishment to maintain my weight since swallowing could become difficult. Due to the extensive medical treatments/appointments, my current employer was not able to hold my position open. Even so, I took this as an opportunity to open my own jewelry store, Mark R. Sheely Jewelry in November of 2001. I figured after surviving a catastrophic illness, the worst that would happen was that I would fail in this venture.
Finally in 2007, with the bone tumors under control, it was time to evaluate my difficulty with swallowing as a result of all my previous treatments. The gastroenterologist we saw recommended the use of temporary stents to try to create a wider esophagus, however after seven weeks they migrated causing some serious health concerns, leading me to be sent home with parenteral feeding (PICC line).
I stayed on parenteral nutrition for several months until my otolaryngologist recommended that another feeding tube be placed since my GI tract was still functional and it was decided that a surgical placement of the feeding tube would be necessary. A traditional feeding tube was surgically placed and I was sent home after a few days. However, since I had been on parenteral nutrition parts of my GI tract were having difficulty adjusting back to taking on nutrients. I had a dysfunctional gall bladder which had to be removed endoscopically.
In 2009, I was converted to a “Genie Adapter,” which was converting a traditional feeding tube to a low profile without yanking out the old tube, however this device eventually failed. My first button was a Boston Scientific and was swapped out for the AMT MiniONE® Balloon Button in 2010 at the suggestion of our local nutrition company based on consumers having fewer issues with the AMT than the Mic-Key®.
I have been using the AMT MiniONE® since 2010. My wife and I change out the button ourselves when necessary and check the water level regularly. We are avid hikers and visit Sedona, AZ twice a year to hike and enjoy the red rock scenery. We hike up to five miles a day, with hydration on the trail necessary because of the physical exertion and the overall arid climate, and my button works great!
Eating and drinking is such an integral part of most social interactions that we face every day. I feel that the AMT MiniONE® low profile button has given me the best opportunity to live as normal a life as possible when facing the challenges of living with a feeding tube. I have had very few issues with my MiniONE® button and would recommend this low profile button to anyone.
