It's truly an honour to have David Rowland contribute a guest post for my blog. He kindly reached out to me after hearing about my 3 day formula challenge and I couldn't resist asking him to share his personal tube feeding story. David has a wealth of tube feeding experience and knowledge, and is a supporter of blenderized tube feeding. He has a positive mind set, an optimistic attitude, and takes every opportunity to raise awareness of the needs of tube fed people.
Thank you so much, David, for everything you do for the tube feeding community and for your contribution to the Natural Tube Feeding blog.
David Rowland's Tube Feeding Story
I am David Rowland and have been tube feeding for almost 8 years. I’m an U.S. Air Force Veteran and 80 years old. You would never know I’m 80 and on a feeding tube as I am very active and live a full life. I am originally from West Virginia and currently live in South Carolina with my “sweet” wife Carolyn.
Why I'm Tube Fed
In 1997 I was diagnosed with head and neck cancer. A biopsy of a small lump on my neck determined that it was squamous cell carcinoma. The primary site was on the base of my tongue that had metastasized to 3 lymph nodes in my neck. It was stage 3 and an aggressive cell type. I subsequently had radical neck dissection surgery and 37 radiation treatments.
Over the next 15 years I had several issues related to the surgery and radiation treatments. Two years following my surgery I began having thyroid issues and have been on thyroid medication ever since. Eight years later (2005) due to radiation damage my right carotid artery blockage had increased to 90%. A stent was inserted which remains today. That same year I began developing swallowing issues and had the first of 4 aspiration pneumonias.
The 4th aspiration pneumonia came in 2012 and I was in the hospital 10 days with pneumonia and pleurisy. On the third day of my hospital stay, I quit breathing, turned blue, and almost died. I am so grateful my life was spared. A swallow test was completed and I did not pass. This necessitated going on a feeding tube for all of my nutrition. I knew what this meant. No more food or drink by mouth. This was a major life change as eating is one of the great pleasures of life. There is a lot of social camaraderie eating with other people and going out to events. So, I knew there would be challenges ahead as well as joy. To me, choosing joy means believing that no matter how dark the day, there is some joy to be found.
Going Home with a Feeding Tube
When I arrived home from the hospital I thought how all alone I was and how I would deal with this change in my life. I didn’t know anyone on a feeding tube who was active like me. I began to look for tube feeders and discovered The Oley Foundation. The Oley Foundation is an excellent resource and so very helpful for tube feeders. They have a great website and they are also on Inspire.com.
Through them I found a tube feeder in Florida named Rick. I emailed Rick and learned he had been on a feeding tube for 13 years and was active like me. I learned that Rick was making trips to Utah to snow ski and was doing hiking in the Grand Canyon. I thought if Rick can do it so can I. Rick taught me many things, and today I am paying that forward by advocating for other tube feeders.
I was on tube feeding formula from the beginning. I didn’t know at that time you could blend real food. The hospital wanted to discharge me on 1,200 calories of formula daily. I informed the hospital dietician that 1,200 calories would cause my weight to plummet. I convinced them to increase the calories and they responded by increasing it to 1,800 daily calories. Even though I told them I would still lose weight they would not budge from that number. When I entered the hospital, I weighed 187 pounds. I am 6 feet tall. Within a couple of months or so I went down to 158 pounds. That’s when I changed doctors and went to MUSC (The Medical University of South Carolina). They immediately increased my daily caloric intake to 2,400 calories. Today, I usually tube around 2,200 calories a day and maintain 172 pounds. I tube a combination of formula and blend real food.
Tube Feeding Insights
As I mentioned earlier, I was lost when I arrived home since I knew very little about tube feeding. Below are some of the things I didn’t know early on in my journey. Keep in mind I am “G” tube fed into the stomach. I didn’t know: • I could gravity feed. • About syringe holders so I wouldn’t have to hold the syringe. • What medications I could crush. • Low profile buttons were available instead of having a tube hanging out of my body, commonly called a “dangler”. • About caring for my stoma to prevent granulation issues. • I could get 140 cc syringes and other large syringes instead of 60 cc syringes. • You could blend real food instead of using formula. • About the Oley Foundation. • About Inspire.com. • About Facebook tube feeding pages. It’s sad, but tube feeding users have to fend for themselves to learn about these things. Doctors/Hospitals need to have informational handouts which include these things.
When one goes on a feeding tube, you have to deal with issues involving physical, psychological, mechanical, social, spiritual, etc. I made up my mind very early on that I would be positive and press on with life. I knew I had two choices; (1) crawl up in bed and be depressed or (2) press on with life. Of course, I chose the latter. If you take the word depression and rearrange the letters it spells “I pressed on” and that’s what I did. I just made up my mind that I was going to stay positive and that I was not going to let this feeding tube rob me of my life. I knew I needed to:
“Live today for what tomorrow may bring and not for what yesterday has taken away”
I knew I could not dwell on not eating orally. I knew I had to look at things differently and I believe if you look at things differently, the things you look at can change. I put the negative things on the shelf. I love my tube as it sustains my life.
Tube Feeding on the Go
I go everywhere to eat, restaurants, vehicles, parks, church, airplanes, etc. It doesn’t bother me to go to restaurants.
"You know, it’s not just about the food on the table but the love of family and friends around the table."
I get into some interesting conversations with people in restaurants who are curious how I tube feed and handle it. It can be a little awkward when just my wife and I go to a restaurant. When the wait staff comes to the table, they usually want to know what you want to drink. Sometimes I just tell them; “I don’t eat or drink”. Some think I am kidding them when I tell them I’m on a feeding tube. Now sometimes I do kid them a little and say; “Only one of us can afford to eat tonight and it’s her turn”, or I might say; “I gave up food for Lent and it worked out so well that I gave it up for good”. One thing you can never accuse me of is “talking with my mouth full”.
My Blended Diet for Tube Feeding
I have blended any type of food you can think of. I always think pizza is one of the hardest with all that dough. But, I do it sometimes. If it’s not thicker than pancake batter I can do it. Some tubies don’t want to blend since they can’t taste it. You can only taste it if you burp it <smile>. Several tubies blend in restaurants. I don’t do that. I do formula in restaurants. Note: Some tubies blend 100% of their nutrition. Some blended food I can gravity feed and some I have to push with the plunger part of the syringe. I use a 140cc syringe or a 100 cc “O” ring syringe. Some tube feeders put beer and wine in their feeding tubes. The first tube feeder I met told me he puts coffee in his tube first thing in the morning for the smell and caffeine and wine at night to relax him.
The “trend to blend” real food has been growing at a fast rate, Tube users can put calorie dense real food (meat, potato, vegetable etc.) in a blender, add milk or other liquid, and then administer via a syringe into their tube. There are also real food commercial formulas available in the marketplace. Homemade blending is preferred by many for physical health reasons, psychological reasons such as, sitting at the table with family and friends, and eating what others eat, the ability to burp up a familiar taste, or because of formula intolerance or allergy.
I do a lot of volunteer advocating for tube feeders now as I do some things to simplify the methodology. I have 5 different types of syringe holders depending on where or what I am tubing. One of my tube feeding friends learned that he could take a 32 ounce PowerAde bottle and machine the bottom out of it making it nice and smooth and then the neck will fit snugly into the top of the 140cc syringe creating over a 35 ounce load at one time. There are several other things that tubies can do to help themselves to be able to make their life easier. Tube feeders feed in a variety of ways. One size doesn’t fit all.
Benefits of Tube Feeding
There are some benefits to tube feeding. I have low cholesterol because I don’t eat any junk food now. When I blend, I try and blend healthy things most of the time, just sneak a pizza in once in a while. I also can control my weight by either using an extra can one day or taking off a can. And, the formula is free as it is paid by insurance. So, it’s free food for life.
Tube Feeding Advocacy
So, I am a 23 year cancer survivor who has been tube feeding for almost 8 years. I look at every day as being a blessing. I’m enjoying life and staying very busy. I am on several tube feeding Facebook pages and also on Inspire (Oley) for tube feeding. I have written a couple of articles for Oley and am also involved in many of their conferences. I did a presentation to 60 people at a MASPEN meeting in Charlotte North Carolina. The group consisted of doctors, nurses, and dieticians. I do talks at civic organizations, churches, etc. or for anyone looking for a program. I love sharing the story of how to overcome obstacles in your life. I also did a live 30 minute radio interview. Carolyn and I have met approximately 200 + tube feeders and we always feel a special bond with them. We feel a special blessing when we can help others on their tube feeding journey.
There are some events in our lives that are beyond our control. In life, we have disappointments, and experience pain, suffering, etc., but we always have hope. I never want hopelessness to be an option for me.
I don’t look at what I’ve lost, I look at what I have. A lovely wife and loving family, great friends, a wonderful church family. I am very blessed!
If you'd like to connect with David, send him an email: firstname.lastname@example.org
If you're like to share your tube feeding story, contact Claire