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Roller Coaster Ride Leads Eventually to Oley
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By: Brian McCall

 

 
Brian feeding for the first time in public in the exhibit hall at the 2016 Oley conference.

My name is Brian McCall. I’m fifty-five years old, and I’m from Long Island, New York. My tale, as it relates to Oley, began in August 2005, when I took my family on a tour of Pennsylvania. We were going to visit a couple of amusements parks and had planned on stopping by a couple of companies that my company does business with.

 

The Ride Begins

It was a wonderful trip. My daughter and I rode the big roller coasters and I got to meet several business colleagues. On the last day of our trip, I didn’t feel right when I awoke, but I drove home according to plan. Late in the afternoon, after unpacking, I really felt bad. I was over shape and out of weight (reverse that), so I thought I might be having a heart attack. I went to take aspirin.

Behold and lo, I could not swallow the tablets nor the water. It was off to the emergency room. After a night in the ER, it was determined I had had a stroke. They transferred me to a hospital in New York City for treatment. I had a procedure done, aspirated a few hours later, and was intubated and moved to a neuro intensive care unit.

After a couple of days, I had a feeding tube placed. I really thought nothing of it. I just wanted to get out of the hospital. With a hole in my throat for a trach and a tube sticking out of my stomach, I was transferred back to my local hospital, where I spent four more weeks going through physical, occupational, and speech therapy. The neurologist said my stroke was probably caused by whiplash from a roller coaster ride. Imagine that. I had so much fun I had a stroke!

Downs and Ups, Ups and Downs

I was discharged and sent home. Because I was put on Coumadin, a nurse came to my house once a week to check my levels. The doc adjusted my dosage accordingly. I attended outpatient therapy three times a week. The emphasis was on getting to walk again, and the speech therapist concentrated on therapy to get my swallow back.

The feeding tube was sort of “just there.” I hadn’t been given any tube care guidelines or anything. Sound familiar? My speech therapist had mentioned the Oley Foundation to me while I was in hospital, but I didn’t pursue anything at that time.

Anyway, for several months after my stroke, I was lucky if I put in 750 calories a day, and I lost about 120 pounds. My primary care doctor told me enough was enough, that I needed to get more calories and more water into me. I got on with developing my tube feeding routine. I upped my intake from three cans a day to about eight, and added more water.

My first tube was a long, dangling tube with a mushroom-type bolster. I was told I would have to go a doctor to have it changed, and that I would need to be under anesthesia when the tube was removed. That was of no particular interest me, so I kept putting it off. That first tube had a heavy y-port, with a toll-free number on the side. After the caps got brittle and worn out, I called the number looking for a replacement port.

The company told me they could not sell to the end user, and they did not offer any suggestions, except for me to contact my supply company. Well, I did not have a supply company, so I purchased a couple replacement ports off the internet. The ports have barbed fittings to push into the tube, so changing them was difficult. I would just cut the tube below the port and push in a new one. I did this several times, until my dangling tube got to be this little stub of tube sticking out. (See note at end of article on page 5)* It was time for a change. The doc I went to said he would place a tube with a balloon-style bolster, and future changes could be done in his office, with no need for the anesthesia.

During that time, my sister who lives in Salt Lake City, Utah, said the Oley conference was being held there, and Rick Davis, who was an associate of my brother-law’s, was going to be there. Like me, Rick had had a stroke that knocked out the ability to swallow. My sister went to the conference for a day and told me all about it. That’s when I really started looking into Oley for support. I discovered they held an annual conference in places all over the country. I wanted to go.

I work for a swimming pool company here in New York, and the conference dates were always the week before the Fourth of July. Not a good time for me to take off. Conferences were held in Saratoga Springs, New York, and Cape Cod, Massachusetts—both within easy driving distance for me—but the timing was bad. I would check out the photos from the conferences and kick myself for not going.

Exciting Twists and Turns

To my supreme delight, the dates for the 2016 conference were July 5–July 9. I could go! The 2016 conference was being held across the country in Newport Beach, California, but I was determined to attend. I made plans to bookend the conference with a visit to my sister in Salt Lake. I booked my journey. Of course, nothing was direct. I was on eight planes in eight days.

I flew into Salt Lake on Monday July Fourth, and headed to Newport on Tuesday the fifth. I kept thinking of the line at the end of the movie The Shawshank Redemption, when Morgan Freeman says, “I’m so excited, I can barely sit still or hold a thought in my head.” That was for sure. I had never seen the Pacific, and I was hoping to maybe get a chance to dip my toes in someday.

On the cab ride from the airport I stopped at the supermarket to get a case of water, and then it was onward to the Marriott. Not only had I not seen the Pacific, but I had never been to California. All the sights were wonderful and new.

I got myself situated and then I went to the welcome reception which was being held outdoors. I immediately met some acquaintances. However, I had only packed shorts and short-sleeve shirts (it was Southern California in July after all), and it got chilly once the sun set. I didn’t stay for the entire party.

The next day was seminar day, with a variety of topics, all of which I found fascinating. Then the exhibits and lunch began. I went back to my room and retrieved the Sanford Stand I had gotten from Master Chief Flach, got back to the exhibit hall, and sat at a table and poured in lunch. It was my first time ever feeding in public. I know some Oley members don’t have a problem with that. I’m just not able to overcome my modesty. But it was all very “normal” while in that big ballroom.

I got to meet and talk to several exhibitors and other Oley members. I met members that had testified in Congress, and when I got back to New York, I wrote the first letters I had ever written to my congressman. It was such a feeling of community.

That night, I went across the street to the big mall to buy an extra bag to carry all the goodies I had picked up.

The second day, I attended the morning seminars, and sat with Dr. Lyn Howard (an Oley Foundation co-founder). We chatted like good friends. She is a truly amazing lady.

One of the morning presentations was called “To Swim or Not to Swim.” I was particularly interested in this topic, because I love swimming in my own pool and, being in the business, I was very interested as to what the medical field had to say about swimming. I had read about swimming with tubes on the Oley site, but this was firsthand information. My ignorance arose when folks talked about “central lines” for parenteral (IV) nutrition. I have no concept or experience with such lines. I just know the tube into my stomach.

I attended the breakout session in the afternoon about swimming to add my two cents of knowledge regarding swimming pool sanitation. I felt that I contributed a little, which is a pretty rewarding feeling. Then it was off to the airport and two planes back to Salt Lake. I spent a few days in Salt Lake doing the tourist thing, and then two planes back to Long Island. I never did get the chance to get my tootsies in the Pacific.

Back Home

When I got home, I had the time to process my experience. I thought it was absolutely wonderful. One of the things that had been on my mind before the conference was the new ENFit® connectors that are being discussed for feeding tubes. Talking with the feeding tube manufacturers in the exhibit hall, who assured me they will still manufacture the current, “legacy” tubes, was very comforting. I have a Mic-Key button, and I like the catheter-end extension tube.

I was delighted to hear that the 2017 conference will be held after the Fourth of July, and it’s in Old Greenwich, Connecticut. I know some folks had long, long drives to past conferences, but Greenwich is really sort of in my backyard. I look forward to hearing from and meeting some amazing people again that are doing wonderful work. I don’t think anyone wants life support from a tube, but thank goodness for the tremendous support the Oley Foundation offers. Help along way. Perfect. See you in Greenwich!

*Editor’s Note: The Oley Foundation does not sanction the practice Brian describes, and cautions against buying tube parts from unknown sources off the internet. As Brian would agree, it is always important to get proper information and support.

LifelineLetter, March/April 2017

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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