- Meet Consumers/Patients
|Rob & Tammi Stillion|
The Stillions Step Up to the Plate
Just for the record, Oley staff wrote this headline. We were blown away by the volunteer commitment Rob and Tammi made recently to become Oley Ambassadors, help with an Oley support group in Toledo, OH, and coordinate Oley’s Equipment/Supply Exchange program. Thanks for stepping up to the plate!
Prior to 2001, my wife Tammi and I had the normal American life. I worked as a firefighter-paramedic and Tammi worked as an emergency medical technician—which is how we met. We had two sons and a daughter and lived in a small neighborhood. Then, in the fall of 2000, Tammi noticed a small, bulging area starting in her abdomen.
We made a trip to our family doctor. He told us, “I think it’s a hernia, but it’s in an unusual area. I want a surgeon to look at you.” So off to the surgeon’s we went, and a test was ordered. One day in February 2001, as we were sitting in the doctor’s office, the doctor came in and told us, “You have a mass in your abdomen wrapped around your intestine. We think it’s cancer and we need to get it out right away.” That day everything changed.
Surgeries and Surprises
Tammi’s first surgery was the day after Valentine’s Day. A family friend who is an emergency room doctor went to check on Tammi and came out to where my parents, Tammi’s sister, and I were waiting. He told us they had had to remove a large section of Tammi’s intestine, but that she should be able to function with what was left.
Two days later, however, she was rushed back into surgery with complications. After the surgery Tammi had only six inches of her small intestine and two-thirds of her large intestine left. We were told she would have to go on parenteral nutrition (PN). Again we were on a road that would change our lives forever. Even as a medic I had had no real involvement with patients on PN. So the education began.
Tammi was discharged three weeks later. Our bedroom, which was done in a northern woods theme, suddenly began to look like a hospital room. Dressing change kits, saline, PN tubing, and IV poles took the place of other items. We learned about dressing changes, home PN (HPN), and J-tubes. I quickly became more familiar with central venous catheters, PICC lines and ports than I ever thought I would.
We found out Tammi would never be able to work again, and we started paperwork for disability. We were disappointed at how hard it was to get any help from the government—even after all those years of paying into the system. In addition to being a dad and a husband, I became a caretaker, and then, in some cases, an advocate. Meetings with attorneys and doctors took the place of the walks and bike rides Tammi and I had previously enjoyed.
After a few years of struggling financially, I took a second job to help meet our bills. As I found myself in a new battle with insurance companies, I began to learn about Medicare and insurance rules, and how to use them to our benefit. In the meantime, my mother did some research that indirectly led us to a home care company. They could answer my questions about billing and HPN and had a pharmacist on call to answer questions. Wow, I thought, what a great idea! Up until this point I hadn’t known these kinds of companies existed. It was the start of a wonderful relationship.
Through all of this I found I had a beautiful wife. We became closer than ever and spent more time together doing things like watching movies on the couch, going for short walks together, and swinging on the glider on our deck. My wife had always loved to sew so I began to save up to get her things for sewing. During this time our sons graduated from high school. To pay for college, our oldest boy joined the U.S. Coast Guard; later his brother joined the U.S. Army.
Our routines revolved around IV poles, HPN bags, tubing, and catheter care. When planning trips, we considered how far Tammi could travel in a day and where rest stops were located. In 2007 came the news we had dreaded but expected: the son who was in the Army was going to Iraq. I worried this would have an adverse effect on my wife due to her medical conditions, but I soon found out she was the glue that held our family together. She put up a strong front for the family even though I knew she was worried sick. Our son regularly checked on his mom by e-mail and instant messaging and returned safely fifteen months later.
Our vacations became trips to different medical conferences. Through them, we learned about Oley. We attended our first Oley conference a few years ago and learned there were other people just like us.
An Advocate’s Role
In time I have come to understand that as a caretaker I have a large responsibility. I have learned that I have to be the advocate, insurance expert, and billing person, as well as spouse and parent. There is a patient bill of rights, and I’ve learned that it’s very important to become familiar with it, because it is there for us. I have learned how to deal with insurance companies and Social Security. I’ve learned there are government agencies to help us, and we need to use them to our benefit.
When Tammi is hospitalized, I do not hesitate to meet with the patient representative to discuss how I want things done. I often feel I know more about Tammi’s care than the nurses, and in some cases, more than the doctors. I am never afraid to tell them to stop if they are doing something that may adversely affect Tammi’s care. I’ve learned I can say I am staying with my wife during a procedure, especially one that involves her central line. Remember, it is your catheter and you know how to take care of it.
HPN does not have to change your life. It requires some adapting, but you still can lead a normal life. Never hesitate to ask for help if you need it. There are national support groups like Oley, and local support groups, some organized by Oley Ambassadors [like the Toledo group; see page 5]. Use them—they can provide a wealth of information. Find other people in your area who have the same conditions and ask for advice. Tammi and I just had a young lady from Ohio call us and we have started talking to her on a regular basis about things that can help her. As advocates and caretakers we have a responsibility to help others.
Our oldest son is now an officer in the Coast Guard. Our middle son is in the Ohio Army National Guard and going to college. Our youngest child, our daughter, is in college studying to be an early childhood education teacher. We recently moved into a farmhouse where I made a sewing room just for my wife. She has started to quilt and recently joined a quilting club. She has lots of room to garden. Tammi and I celebrated our twenty-fifth wedding anniversary this year. We took a trip to Amish country, where we took a buggy ride and walked hand in hand a lot.
Our advice is to find what makes you happy and do it. Having medical problems does not mean life stops and you just have to adapt to what you can do. Remember that things will still be tough—I am still working two jobs and we still have bills to pay. But we are closer than ever. Tammi never complains when we can’t go somewhere or do something because of money. We just find other things to do together, such as taking evening walks through the farm fields with my wife’s new puppy (which we will be training to be a service animal).
Robert and Tammi have also signed on to manage Oley’s Equipment-Supply Exchange program. This is a big undertaking, and we are very grateful for their willingness to assume this responsibility. Click here to read more about this program.
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Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week