The year 2009 came in like a lion and appears to be leaving in the same manner! New Years Eve seemed to be the coldest, windiest day of winter as I welcomed in the year with my Life Group and a collection of other local groups in a progressive dinner event, followed by the wrench drop in Mechanicsburg. Now I am looking out the window as a blizzard passes through the Harrisburg area. We already have close to a foot and the snow is expected to continue to fall through the night and into the morning!
This year has had its ups and downs. It’s been the toughest year I’ve had physically since my transplant in 2006, but a great year in other aspects. I have been able to participate in some incredible growth and activity within G-PACT, the non-profit I founded in 2001 for Gastroparesis. This year marked the beginning of our expansion into Chronic Intestinal Pseudo-Obstruction as well. I spent 18-20 hour days, 7 days a week through January, February, and early March completely overhauling all of G-PACT’s design work and website. It was certainly worth it as we joined the board of the Digestive Diseases National Coalition in March. Over one weekend each year, we attend a conference and one day lobbying with them and other digestive organizations in Washington, DC to increase awareness of our conditions and express our initiatives. This year G-PACT was the most largely represented group there with seven people traveling all the way from NY and NC!
In May, we exhibited again at the largest annual international GI conference known as Digestive Diseases Week (DDW) which was held in Chicago this year. We were invited to attend the Medtronic reception and meet other physicians and surgeons who treat GP and CIP, as well as additional Medtronic staff. The week also provided us with opportunities to introduce ourselves to physicians we had never met, speak with many we have worked with for years, and educate many on the conditions as a whole. It was a busy week buzzing with activity. A total of eight people helped with the exhibition that week coming in from MN, OH, PA, and TN. This year the event will be held in New Orleans and all of the same people plan to attend once again.
In June, G-PACT also exhibited at the Oley Foundation Conference held in St. Petersburg, FL. More of a patient-oriented event than the other two and geared towards people on home nutrition, we had the opportunity to meet with many patients we have served over the years and meet new ones as well. Representatives traveled from NY and NC as both attendees and exhibitors.
In August, I had the opportunity to attend the Willow Creek Leadership Summit, hosted via satellite by my church, for the second year in a row. That is an amazing experience and helpful in my work with G-PACT.
The growth of G-PACT has expanded into other areas as well. We have had recent encouraging teleconferences with the FDA regarding new drug studies, and have developed a close relationship with personnel there. In recent meetings, the group of 10-12 physicians, technicians, surgeons, and other staff have been very impressed with our selected patient group and with and the individual G-PACT volunteers. For the first time they recognize our dire situation and have an enhanced, more urgent interest in helping us find a better treatment option, focusing on medication to actually help gastric motility rather than medication to treat symptoms. They commented that we are the nicest, most dedicated patient group/non-profit they have ever worked with and that we truly are a team!
We also have launched several new programs and started working on a number of new ones. The number of people contacting us and joining our groups each week is astounding. We are really making an impact and I love doing what I do! It’s rewarding to see things moving in the right direction! God continues to give me wisdom as a very young leader in a rapidly growing organization. I know I am in the right place!
One of the other big highlights of my year has been my experience with LCBC Harrisburg. LCBC is the church I began attending in July 2006, immediately after I returned home from my transplant for the first time in almost two years. In October, 2007 a new campus was launched in Harrisburg and I jumped on board immediately working in kidMin (Kid Ministry) and have loved every moment! We have been meeting in a local school, but during the spring of this year we finally purchased a permanent home! We are moving in during January and there is much to be done! I have helped working with some of the demolition projects and am excited about soon beginning to help with the painting and design work for the kidMin rooms. I have served in many capacities including Life Group Leader (teaching kids in small breakout groups), kid greeter (welcoming kids as they come in the door), and in the kidArcade (a place for children whose parents worship in one service and serve in the second). My main role in the new building will be Captain of the kidArcade as I will be in charge of heading it up every week and being responsible for its upkeep. Our theme is changing from Safari Adventures to kidVenture Island.
I also volunteer in the LCBC HOB (Harrisburg Office Building) approximately one day a week. I really enjoy that too and may have more volunteer opportunities throughout the week once we move into our new location. I’m looking forward to that, as well as being able to go in every Sunday without having to dig everything out of moving boxes! While the temporary experience has been fun and bonding, and a great way to meet people, we are all ready to settle down in a permanent spot and focus on more things. My Life Group, a small group of about 10-12 people in their late 20’s and 30’s, has been awesome. I’ve never felt closer to a small group of people who are so open, accepting, and fun. Sunday is my favorite day of the week!
In May, I was thrilled to welcome our newest family member, Nolan, into the family! He was born on May 13 to my younger sister, Celeste, and her husband, John. He’s their first. Nolan makes my third nephew! My older sister and brother-in-law, Ben and Faith, experienced a change recently as well when they moved out of Etters to Manheim in order to be closer to their church. My parents keep busy with work as usual and love playing the grandparent role more and more!
Physically, this has been a very challenging year from the start. Last Christmas I received what was the greatest gift that day. Dr. Kareem (transplant surgeon) finally listened to me and started me on a treatment for the severe Dumping Syndrome I developed as a result of the transplant. The medication kicked in immediately. I thought I finally had my digestive conditions managed quite well. Unfortunately, I was still battling with extreme fatigue with unexplained anemia and required high doses of weekly blood product injections, numerous blood transfusions, and eventually six iron infusions. In the midst of all of this, I began to notice additional GI complications.
In April, it was discovered that my stomach was emptying slowly and I was given the diagnosis of Gastroparesis once again. Thinking it was caused by my medication for the Dumping Syndrome, the dosage was decreased. It was not long before my Dumping Syndrome got out of control once again. Testing later in July again showed Gastroparesis, and the Dumping Syndrome continued as well. Unable to absorb or eat much food, I started to lose a good deal of weight. I have been hospitalized multiple times since with malnutrition and weight loss down to 87 pounds. In September, my doctors placed another central line in my neck for TPN (IV nutrition) in an effort to get my weight up and my nutrition more stable. As usual, I started getting sepsis (infections in my line) and once had to be airlifted to Pittsburgh from Hershey Medical Center once I was stable enough for the trip. Within a few weeks I developed another infection on Thanksgiving Day and was admitted to the MICU at Hershey Med. Within six days of having a new line placed in my chest, the line was removed in the OR in Pittsburgh because it was already draining with infection again.
I am now trying to learn to eat enough to maintain my weight and nutrition in spite of dealing with both Gastroparesis and Dumping Syndrome, two opposite conditions! It’s too dangerous for me to remain on TPN, especially with a weakened immune system, and they said eventually it will kill me. My doctors continue to adjust my meds in an effort to help me be as asymptomatic as possible. I am working with the transplant dietitian more closely and am trying to learn how to move on with life in spite of how debilitating this continues to be for me. They are trying to work more closely with my local doctors in an effort to cut down on the frequent trips to Pittsburgh. I require weekly labs to follow my nutrition, especially my potassium which has been low and puts me at risk for cardiac arrest due to my long QT interval (heart condition). Please pray that between the medical team at Pittsburgh and my own efforts that we can keep everything under control.
I experienced a sad event a few weeks ago at the loss of my 6 ½ year old guinea pig, Spunky, due to old age. We went through a lot together and I still look for him to come shooting out of his igloo every morning to greet me. But, I still have my Jeep, Blue Lightning, and enjoy the summers out with top off! One of my transplant friends and I have plans to go muddin’ together soon!
I hope everyone has a great holiday and an awesome New Year! Although I am not sure exactly what my New Year’s Eve plans involve yet, I do know that I have a pretty full calendar for the next few weeks. And that’s the way I like it!
