Sunday, December 20, 2009

2009 in review

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!

Thursday, November 26, 2009

Year-Round Thanksgiving

Throughout the year I make it a point to sit down and write out the many things I am thankful for on a regular basis. For me it is critical to recognize that I have been given so much, not just once a year, but all the time. God is good...all the time!

In spite of the ups and downs I consistently face, I can't help but wake up every day grateful to have woken up! Sometimes I have to remind myself of this because the challenges seem overwhelming and almost insurmountable at times. I have my days when I am unable to get out of bed, yet those days give me the opportunity to rest and think about things that I would not otherwise. It can be a time of worship, prayer, to laugh at my own imaginative thoughts, deal with my inner struggles, anger, and misunderstandings, or a time to question life and review my own. It is often during these times when the greatest inspiration for my writing comes through.

In recent weeks, there has been an explosion of status updates focusing on what people are thankful for. While I recognize that it's important to take time out each year from our busy schedules to recognize how fortunate we are and focus on what we have been given and the sacrifices made for our country, I also believe that we need to recognize this throughout the year. Therefore, I did not participate in the status update experiment. Instead, I have gathered a collection of "thank yous" that I have written in notes throughout the year and am compiling the most consistent ones all in one.

I am thankful for God's continued work in my life and for the opportunities I have to serve Him in a variety of capacities

For LCBC Harrisburg, the impact it has had on my life, and the many friends I have made there this year who are so supportive, loving, accepting, and fun!

My Life Group which is always there for each other regardless of our life circumstances. The close bond we all have to each other. I'm thankful for the way God brought together a perfect match of people who had never met before, but immediately connected. It's a place where we can all share openly without fear of judgment or breach of privacy. Plus, we just have fun!

LCBC Harrisburg's new building which we are moving into in January! The opportunity to serve in the construction process and contributing to lives being changed by Christ

My family who is there for me through the tough times and the better times. For my mom who has sacrificed many weeks and weekends with me in Pittsburgh this year. For my dad and his sacrifice of having to fend for himself while my mom has been with me in Pittsburgh. For both parents for putting up with me and providing me a cool apartment to live in downstairs and be as independent as possible. The financial sacrifices they have made as a result of so many trips to Pittsburgh.

My sisters and their families for their sacrifice when my mom needs to be with me in Pittsburgh. For helping me out when my parents have been out of town and I've gotten in a bind. The unconditional love they have, and their interest in making my quality of life as good as possible. I'm thankful for my nieces and nephews who enjoy life, have a heart for God, and visited me and made me things to show their love after Spunky died.

The birth and health of my youngest sister's first baby, Nolan.

My organ donor family for giving me another year to enjoy life and be thankful!

For an amazing medical team in Pittsburgh who kept me alive well beyond the amount of time any other medical team could before my transplant, and their continued dedication to all aspects of my health since

For my transplant family who is always there for me and each other. Their understanding from a first-hand perspective what we deal with, their humor throughout it all, and the community and bond we all have to get through the good and the bad

I'm thankful for good food!

That there is light at the end of the tunnel for getting off TPN. I am thankful that at least today I did not wake up in the hospital!

G-PACT and the incredible team that has come together, unselfishly giving their time to help find a cure. The progress we have made this year, all of our supporters who have kept us going through donations or overall encouragement, and the amazing people I have met who never give up. The volunteers who so passionately work together to fight this.

Spunky, my guinea pig, who gave me 6 1/2 years of happiness, love, and laughs

Karis making a miraculous recovery and pulling through what seemed to be the impossible on many occasions.

I'm thankful to be an American- no matter what.

I am thankful for each and every one of YOU who has in some way played a role in my life, whether you know it or not!

My jeep :)

The needs AND wants that have been fulfilled this year!

I'm thankful for yesterday, today, and tomorrow

Any Steelers win!

I could go on and on, but these are the things that are most meaningful to me (ok, yeah, some less important than others...many of which I didn't list or this would go on forever!!).

Every year for Thanksgiving day my family gets together for lunch, football, the Wii, naps, black Friday coupon clipping/sale hunting in ad papers, and to make Christmas crafts or sugar cookies with the kids for Christmas. My older sister has a tablecloth and each year we write on it what we are most thankful for. There's so many I have a hard time choosing just one! But in looking back over the year, two major things stand out. First, the impact of LCBC Harrisburg and my family there, the growth I have experienced, and the many cool friends I have made. Because of you, I look forward to every single Sunday. I notice that when I miss a Sunday, the following week is more challenging for me. It's clear the impact that connecting with you each Sunday has on my life. The second is the new, incredible opportunities I have been given this year to represent people suffering from GP and CIP. For the incredible team of volunteers, our supporters, and the many inspirational people I have been able to meet as a result. Without all of you, I wouldn't have the determination or ability to contribute to the advancement of GP/CIP research and awareness. Your fight keeps me fighting too.

Thursday, August 27, 2009

The Challenges and Experiences of Trying to Merge Two Worlds

I live in a world that is different from most. I face a different reality than that of your average 31 year old. Mine is a world which is very real, a normal for me, yet poorly understood by the majority. It is a world in which my every attempt to describe it will not even begin to bring you close to understanding the impact it has in all aspects of my being. And while it is impossible for you to step even briefly into my world and get an adequate sense of my daily life, it is also impossible for me to step into your world and get a sense of reality in what is deemed to be normal in the average American lifestyle.

Since 1994 I have been challenged by something much greater than myself, human capabilities, and at times, I have even wondered about God. Being diagnosed with gastroparesis at the age of 16 was only the beginning of what would turn out to be both the biggest horror in my life and the greatest blessing as well. Since then I have been diagnosed with a number of other conditions which have resulted in six accounts of cardiac arrest, among other complications, and eventually led to total gut failure resulting in the need for a five organ transplant to save my life. What was intended to keep me alive for years, IV nutrition, eventually almost led to my death. I often wonder what my world would be like if I had never developed these conditions and my life went in another direction. What kind of person would I be? What would my passions entail? How would my world and the world of those around me be different? What would my perspective on life be? Where would my priorities lie?

Although I often ponder these questions, it is impossible for me to begin to fathom what the results would be. My life has been so consumed by fighting to get around in a world submerged in medications, doctors, hospital stays, plastic tubing, needles, artificial food, and that plastic tape that peels off all my skin cells when removed. I don’t know life any differently. Since my transplant my life within the medical system has improved, but will never be to the point of complete independence.

While no one has full control over his or her future or daily events, my activities are even more limited by something over which I have no control. My world is not managed so much by the hustle and bustle of daily affairs and the lives of those around me as it is by my own body. While my friends and family must manage the challenges of full-time jobs, raising families, and social activities, I must manage the frustrations of dealing with the ups and downs of living with a chronic illness. As they make plans for how to manage their time and various events, I am unable to make reliable plans due to the unknowns and changes within my health multiple times throughout the day. My schedule includes ensuring that my medications are taken on time, every time, and within a certain number of hours of each other. My daily routine will never be void of medical treatments, potential complications, and reminders that my world is beyond average. Unlike a vacation from work, school, or other events, I will never be able to take a vacation from my life as a multi-visceral transplant recipient. My life is dependent on the accuracy in which I follow a certain regimen. I must avoid many things that others enjoy such as gardening, certain foods, specific types of environments, tattoos and piercings, and certain jobs due to the chances of picking up infections. I have to be very conscientious of my surroundings and ensure that I avoid or limit the amount of exposure I have to certain people, animals, and diseases that may not affect the average person, but could severely threaten my life and health. An infection in me is not treatable by a simple oral antibiotic, but must be treated aggressively with IV antibiotics in order to help my body be able to better fight it off. Being a transplant recipient makes everything more complicated and dangerous.

In spite of living in a world which is filled with pre-cautions, uncertainties, and a daily focus on doing my part to stay well, I cannot live in a bubble. I refuse to live in a bubble. In spite of the fact that I recognize some of the things that I do to enjoy life could potentially be dangerous, I choose to do certain things anyway. I am not allowed to own a guinea pig due to the risk of developing rotavirus. However, I have had guinea pigs since the age of nine and my life would be incomplete without a little pal. I take risks when working around kids who may be carrying around an infectious disease that I could easily catch, but then my involvement with my church would not be in the positions in which I most enjoy and have been gifted to serve. It’s all a matter of weighing the positive and negatives, the pleasures against the risks, and the advantages with the disadvantages.

One of the hardest things for me to deal with is trying to acclimate myself into more of a normal world as my health has improved, while it is nowhere near to the point of being independent in what I do or free from a life of health complications and treatments. It is tough to deal with what is considered to be a “silent” or “invisible” illness. While I am glad that I often don’t look sick and my health problems are not overtly apparent to the public, it is also difficult to deal with the discrimination, lack of understanding, and blank stares of battling serious chronic illnesses while looking perfectly normal. Although undoubtedly I have many challenges, people often don’t understand the measure of impact it has on my world because I am able to walk, talk, breathe, drive, and generally have a positive approach to life and do normal things while rarely seeking assistance or accommodations unless absolutely necessary. On the surface, no one would even know the struggles I have within or the level of pain that I deal with every day. I make an effort to push myself in spite of being weak, tired, sore, or nauseous. In fact, sometimes I push myself to the point of knowing that I am physically no longer safe to continue what I am doing, but rather than seek help, I often work through my own solution, wait it out, or continue anyway. I recognize that these are not the best avenues to pursue in many cases, but it’s tough because I want people to see me as being normal and I want to do everything on my own.

I have discovered that although dealing with a chronic illness in my last few years as a pediatric patient and through college, that it is actually more difficult socially to manage it now. Upon meeting someone for the first time, the natural first question is: what do you do for a living? It’s an impossible question to avoid! Everyone works…right? It’s a great and normal conversation starter in most circumstances, yet in my case it stumps me almost every time. Immediately, any efforts I may have made to postpone or avoid being labeled as having a chronic illness are destroyed. While I am passionate about what I do and proud of the accomplishments I have made in life to this point, there is no way getting around explaining why I do it. And, to top it off, I don’t do it for a living. At the age of 22 and straight out of college, I was unable to work full-time and was approved for disability within two months of applying. But needing something to occupy my time and help others in the aftermath of months of depression due to the postponement of my dream, the pursuit of my graduate Art Therapy degree, I started what would become the world’s largest support group for gastroparesis. Within one year, I had used that to start the only non-profit in the world dedicated to fighting gastroparesis. Eventually, because the two conditions frequently come together, we expanded into chronic intestinal pseudo-obstruction.

Every time I am approached with that dreaded question regarding career, I try to respond in the most positive light possible, yet there is no way getting around the immediate identification of me as someone who is suffering from a chronic, very debilitating disease. My typical response is that I am founder and CEO of a non-profit organization which I run from my home for gastroparesis and chronic intestinal pseudo-obstruction, two conditions from which I suffered which led to a five organ transplant in March 2006. Although I try to leave it at that in the early stages of meeting others, naturally the term “five organ transplant” brings up even more questions and leads me into a very complicated, albeit ice-breaking, conversation. There’s just no quick or easy way to explain what leads up to a five organ transplant or any portion of my very long and complicated medical history! This question is then usually followed by the question of my living arrangements. It is difficult for me to explain that I am unable to be independent and live in an apartment in the basement of my parents’ home. It is often difficult to connect with others in my age group because their world is so different from mine. They are able to talk about their careers, often marriage and kids, rent or mortgages, co-workers, and other social events. These things are unfathomable to me! I can’t even begin to understand how a person can hold down a full-time job, come home to care for a family, attend and/or organize social functions, and keep up with regular household chores and shopping. I feel as if I have accomplished something in a day if I manage to spend a couple hours focusing hard on one project, or making a trip out to run a couple of errands.

Although I try to step into their world and understand what their lives are like, it’s impossible for me to relate so therefore I am often left speechless and unable to carry on a routine conversation. At the same time, they are unable to understand where I am coming from and that the world I live in is impossible to step out of. While a career, family, and common, everyday activities dominate their lives, my life is filled with things that few can understand. It can be a one-sided conversation. Since it is much more common to do the things that they do, I can connect to an extent with their stories, but when it comes to sharing my own experiences it’s just not the same. I often don’t know how to connect and it makes it difficult to get to know me for who I am, as an average person, just coming from a completely different perspective and a totally different life experience. It impacts everything and there is no way around it. I often feel left out of conversations because I am unable to talk about or understand things that are so commonplace for most people, yet they are also unable to relate to the things that are so commonplace for me. As much as I strive to maintain normal conversation and limit my health experiences, it is such a big part of my life and a huge part of who I have become, what I am passionate about, why I do the things I do and say the things I do, and why my lifestyle is as it is that I don’t know how to get around it. I certainly can’t go back and change those circumstances in order to achieve a better sense of normalcy, and there’s nothing I can do now to escape the realities of what I deal with on a daily basis and the limitations I still have. I often find myself desperately trying to dig up stories of times when some event in my life happened that was within the realms of normal...a college memory, an internship experience, or a G-PACT issue that puts me in the career path in a sense, but unfortunately most experiences are still tainted by the 15 years that my life has been so wrapped in the medical world. I can’t separate them. No matter how hard I try, I can’t. It’s all part of me and who I have become. Yet, for some reason, many people tend to think that I should be able to separate the two. It’s only natural for my jokes, comments, and conversations to somehow involve that aspect of my life because it has such a profound influence on everything that I do.

Not too many people my age understand the feeling of losing very close friends, most of whom have shared the same experiences as I have. It’s a scary feeling to watch as some of my closest friends who fought so hard with me continue to struggle, and in many cases, lose the battle. Over the past year, I have dealt with the loss of several very close friends due to transplant related complications. I have attended memorial services for other friends in years previous as well. Although I am personally doing well in comparison, no one but those who have been through the transplant process can understand the fears that I have and how I must manage those fears and frustrations on a daily basis. Although I am very optimistic and see my future as bright and fulfilling, I can’t help but deal with strong emotions when any situation goes awry in my life or that of my transplanted friends. I don’t dwell on these things by any means. I make every attempt to avoid looking to the past as much as possible, but I certainly can’t separate them from my life.

Having a transplant changed things for me. I see this life as separate and completely different from my previous one, yet they are still connected. I have different issues I must battle and the entire transplant process has brought me to a greater understanding of myself, God, love, my family, friends, overall suffering, and the incredible need to fight regardless of the odds and discomfort involved. However, pre-transplant complications led to the need for a transplant and it’s all part of the big picture. I often feel as if I am ten years behind my peers in many ways because I am unable to talk about regular life issues beyond my college experiences. Sometimes I feel as if this makes me immature, but then I recognize that I am far from it. I may not be able to relate on levels that society places in front of me as a way of measuring maturity…the expectations of supporting myself financially, being totally independent, and caring for a family, my maturity is far higher in other levels of life and understanding and certainly my lack of independence is not related to anything in which I have any control.

I know how to handle complex challenges and decisions that others my age have never even considered. I’ve had to write an advance directive, a clear indication that I recognize my mortality at any time. I’ve had to push through pain, near fatal infections, cardiac arrests, surgeries, the inability to eat, living without a small bowel for a year, and the fight back from a 16 ½ hour five organ transplant and its complications just to achieve the measure of health that I have today. I have had to learn how to manage all the emotions, frustrations, and fears that come with the whole process and dealing with much of it without the full understanding of those around me. My battle with that continues as I do suffer the effects of some PTSD as a result of some of the medication problems I experienced post-transplant that left me unable to sleep, speak at times, think, remember, control, or care for myself. I was terrified, and what added to the trauma of this was the inability to express myself during that time and describe what I was experiencing to those who were trying to care for me. In spite of that, I have been able to overcome most of those memories and advance my life forward in an effort to focus on the future. While I am still haunted by those experiences, I have figured out how to cope when the emotions and fears hit and now I am able to lessen the impact they play in my life. These experiences have given me wisdom beyond my age as I am able to understand the challenges that come with managing not only physical problems, but the associated emotional, psychological, and spiritual challenges that so many people with chronic or life-threatening illnesses face. This has greatly enhanced my ability to work with the population in which I do. Although effective as a leader and role-model in G-PACT before, my effectiveness has been greatly enhanced by my experiences and my drive to fight for others has become even stronger. I don’t get paid for what I do in monetary terms, but I am paid every day that I am able to make an impact on the life of someone who is struggling and in need of knowing there are people out there who truly care and are fighting for them. My value as a human is not based on how much I earn, but how much of a difference I make in the lives of those around me.

Battling what I have and dealing with a future of unknowns never gets easier. It never will. I recognize that many of the medications I take and treatments I go through have consequences years down the road as well. It’s difficult at times to know that what is keeping me alive at this point may eventually lead to further complications. But I don’t let that rule my thinking or way of life. I can’t. Somewhere there is a family whose child died during an unexpected, catastrophic event and made the decision to give life to someone else during a time of mourning. I can’t let that family down. I have always felt it is my obligation to do what it takes to make that family proud to have given this gift and to see how their child has made an impact on the world.

The things that make my life so difficult are also the things that make me so passionate about life. Often, people do not understand why the littlest things are so exciting to me…an hour in the Jeep with the top off, spending a couple of hours with a friend, volunteer work doing anything for even an hour or two, and the need to cheer people up through any means I can think of, even if as simple as sending an online greeting card or a superpoke through Facebook! I enjoy meeting people whether online or in person and just getting to know them. It means the world to me to go out with anyone at all to eat or just hang out and chat. The ability to travel and represent G-PACT is exciting because I was unable to do that for years. I love being able to represent thousands of people who are unable to represent themselves. I enjoy things in life that many people dread or try to avoid. Even things I don’t enjoy I often find that I don’t mind doing because I have the capacity to do them…I am alive to do them. There are so many things I want to learn now that I never had an interest in before. I want to travel to so many places! I love life and am grateful for every day that I wake up!

Although it is trying to know that in spite of my efforts to the contrary, I will never be seen as “normal”, I recognize that I have been chosen for a reason to take on this task. My love and passion for God has grown and because I am unable to completely step out of my world and reality, it has given me many opportunities to share how the Great Physician has intervened in my life and given me more chances in life to serve Him. My story has encouraged others who continue to fight that there is hope as they have watched me come from the brink of death, unable to get out of bed, and not expected to live through the transplant, to someone who has recovered and found a way to fight back in a way that helps not only me in my attempts at coping and recovery, but all of them as well.

I recognize that not only do I owe it to my donor family to utilize every opportunity I am given and seek out others that become available, but I also owe it to my God who has clearly kept me in this world for a time because of some great purpose He has. Although His purpose is not always clear and my world is certainly filled with questions, frustration, and an ongoing struggle with inner thoughts, feelings, and fears, I know there is a purpose and it’s not in the future. It is something I am working towards fulfilling every day. So while I continue on in this constant battle of ups and downs, facing the unknown, and maneuvering within the unique and misunderstood world in which I live, I try to maintain perspective and recognize that I am not to be defined by what society deems as normal, but that God has given me a special environment in which to live and operate and a particular focus and gift in life that only those with my circumstances are given. When feeling frustrated by the inability to live up to society’s “norms” and not feeling fully connected with the typical world, I force myself to focus on how the world that I live in would be different if God had not given me the opportunity and abilities to work within it and make an impact in any way possible.

Thursday, July 16, 2009

Was it worth it? My optimism in spite of adversity.

Hey all-

I know it's been forever and I apologize...I've had my ups and downs. Kinda struggling a bit lately, but things going exceptionally well for G-PACT. I survived DDW and we made a lot of contacts. We also sent reps to the Oley conference in St. Petersburg and that went very well too! The growth of G-PACT has been's very exciting.

I wrote the following today just as I was thinking through some things. I thought I'd post it here too since it's been forever since I wrote anything!!! Hopefully I'll post a better update on my actual current status and other life details soon...we'll news is...well, I'm not sure...LOL...

Recently I had an appointment with my PCP. This was just a routine follow up…an appointment which was scheduled for 15 minutes, but in my case it took almost an hour. As my doctor and I discussed all the various issues I have been trying to get under some sort of control, she couldn’t help but be amazed at not only all of the medications I am on for life, but the obstacles I encounter on a regular basis, the continued issues I have to manage, and the complications I face in the future as a result of being a 5 organ transplant recipient, long term medication damage, and the compilation of problems that have developed as a result of 15 years of very serious health problems. She acknowledged the fact that I not only received five organs, and the most complicated ones to manage, but that it is somewhat of a new procedure so research is limited. The future is unknown, lifespan studies are limited, and long-term complications not clearly identified. At the end of a long discussion, she looked at me very seriously and asked “Was the transplant worth all of this?”

Was it worth it? I’ve often wondered why people even ask me that. It’s astonishing to me that anyone would think it wasn’t. When considering where I was then and where I am now, there’s no doubt in my mind it was the right decision. Unquestionably, going through with the transplant was my only decision if I wanted to live beyond my 28th birthday, but I never considered that I even had a decision. I wanted to live. There was no decision involved. There was never any discussion of whether I wanted to go through with it. My doctors never asked me to think about it. It was what it was. I was dying, I wanted to live, and they weren’t about to let me let go either. It all went unsaid. That’s just the way it was.

After a moment of astonishment at the question, knowing that she knew full well how sick I was and how survival was impossible without a transplant and remembering her mentioning that on several occasions, I quickly came back with the response of “definitely!” I proceeded to tell her that although I recognize that I still have so much to deal with, don’t know what the future holds, and there is fear, pain, and frustration in my everyday living, that regardless I have been given at least three years that I wouldn’t have had otherwise. What these last three years have given me go well beyond the experiences and life satisfaction that I accumulated in the previous 28. Why? I appreciate things more. Life is more meaningful. It has purpose. I am clearly here for a reason. I would not have survived the many things I should not have survived if there was no purpose left for me in this life. My doctors did not think I would live long enough to even get a call for organs. After 16 months and a number of near fatal complications while waiting, I did finally receive the ultimate call on March 12, 2006.

I remember Dr. Kareem, my transplant surgeon, was hesitant about going through with the transplant that night because I was hospitalized at the time with uncontrollable blood pressure. He was afraid that my very fragile state, compounded with my blood pressure complications, would cause me to have serious complications during the surgery and that I would not even make it out of the OR. Yet, he was also aware that I had waited so long and my time was short. The uncontrollable blood pressure was an indication that my body was beginning to shut down. Although I did not express it to anyone, I believed at that point that I was in my final week or two of life. I was completely incapable of caring for myself in any capacity and relied on others to do everything for me.

After a long night of waiting while the organs were being harvested and I was being prepped for the operation, I was finally wheeled into the OR at around 8:30 that Monday morning. I arrived in the TICU at 1 AM the following Tuesday morning after a 16 ½ hour operation. Two days later I woke up to the reality that I had an entirely new digestive tract. I had received a small bowel, stomach, pancreas, liver, and duodenum from a child. I also learned that I had much to be grateful for and that God was definitely in control of the situation. Pre-transplant testing had shown that my liver, although not in perfect shape, was well enough to regenerate on its own once I was off all IV nutrition and eating again. My physicians had told me that if the organs came with a liver, they would consider transplanting it, but if not they wouldn’t. However, once inside, my physicians discovered that my liver was twice its normal size and full of fatty deposits. If the organs had not come with a liver, I would have soon been placed on a liver transplant list and would have had to endure another transplant within a couple of years from a completely different donor. That would have greatly increased the risk of rejection of both the small bowel and liver at some point during my life.

Why is it so obvious that God’s hand was involved in this whole process? Previously I had been called in four times for organs. All calls ended up being false alarms because the organs were not viable. The last call was particularly difficult. We had been told that the organs were in excellent condition and it was not often that they received organs that were such a perfect match. It was a go…almost. At the last minute it was cancelled. These particular organs had not come with a liver. Although that in itself was not considered to be a problem at the time since they were unaware of the extent of my liver failure, the anatomy of my liver was not compatible with the rest of the organs and would not match up. The donor small bowel could not be connected to my liver. One of the doctors came down and kissed me after I received the news, and another insisted on telling me the information on his own without going through a nurse or even my own mom. I cried for days. I was angry. I didn’t understand. I shut myself up in my hotel room and did not want to talk to anyone. All of my friends who had come for transplant well after I had were already home, recovering, and starting to lead normal lives. I started to give up at that point. I would later realize that this was a blessing in disguise because if transplanted that night, I would not have received the liver that I needed.

It’s been a challenging road since, but at the same time it’s been one of the best roads I have ever been on. I have encountered post-transplant related problems with dumping syndrome, undiagnosed for over a year, which often leaves me flat on my back. I battled extreme medication side effects which left me with PTSD as a result of the months of anguish I dealt with, a bout of rejection, frequent thrush, and large hernia in need of repair, and more recently, severe anemia and iron deficiencies. I also continue to deal with pre-transplant complications such as osteoporosis, a suspected unidentified autonomic dysautonomia, mitochondrial disease, or auto-immune disorder, and other ongoing problems as a result of the underlying condition that started all the problems initially and the overall effects of being chronically ill. I have to be careful and avoid certain things, and am unable to do many of the things I used to be able to do. In spite of all this, I still feel as if my life is meaningful, worthwhile, and definitely worth living.

One of the most common questions I receive is “how can you remain so optimistic in spite of everything you’ve been through and continue to deal with?” Optimism does not come easy. It comes easier for some than others, but it doesn’t come easy for anyone who is facing significant life challenges. It can be a personality trait. It’s associated with the amount of family support. It is often dependent on religion or faith. Often it is something that is developed through experience or learning of coping mechanisms of others. Sometimes it is learned through therapy of some sort, whether it be psychological counseling, art therapy, music therapy, or one’s own personal therapy through expression in some form. Optimism can also be gained through helping others. For me, it comes through all of the above.

The past three years of my life have been some of the most fulfilling and I wouldn’t change anything. Each challenge has brought on incredible opportunities. My faith in God has grown as I have seen how He has turned what I perceive to be hopeless situations into something that He can use for good. Over the past three years I have done things that I would not be doing if it weren’t that my perspective on life has changed and I realize the importance of making the most of every opportunity and moment I have been given. Although I was previously involved in a variety of activities, I often didn’t put my heart and soul into them or have true passion and love for what I was doing or the people I was serving. Now I find myself seeking out every possible opportunity to serve someone in some capacity and truly care about, and passionately love, those around me.

Without three more years, I would not have had the awesome opportunity to be part of starting up a new church campus close to my home…a church I love so much, with people I adore, and opportunities to serve and get involved in ways I never anticipated. I would never have met so many who have been so influential in my life or had the opportunity to work with kids in the capacity in which I do. Although I knew I had extra special love and passion for kids I work with in a hospital setting and experienced the rewards of that, I never knew I could have such a desire and passion to teach all kids about the most important things in life and watch them grow and learn every week. However, it’s a challenge for me. Every single week it is hard for me to have the energy to do what I do. I go home exhausted and in a lot of pain, but I also go home completely fulfilled. I realize that if I did not serve in this capacity my Sundays would be easier, my pain would be less, and perhaps I could enjoy more time with family and friends in the evening. But, I also know that I would not be nearly as satisfied and there would be an emptiness that nothing else could fill.

The past three years have also given me incredible opportunities to share and experience the growth of G-PACT. As President and primary founder in 2001, we made some fairly big steps in early stages. However, as my health deteriorated along with that of some of my colleagues, the organization went into basic maintenance mode. My initial vision for G-PACT was lost in the midst of my own health issues. Since my return in the summer of 2007, I have been able to see and experience an amazing growth and passion for the organization and incredible support and interest in what we do. The experience has been awesome. G-PACT has become a name highly respected within the medical profession and has impacted the lives of at least 10,000 people since its founding. I have been able to watch the passion of new volunteers as we have re-emerged. Nothing excites me more than to see that the volunteers share the same passion that I do and that G-PACT has become theirs and not just mine. The team effort has been incredible and everyone shares my vision. I am confident that if something were to happen to me at this stage and I was no longer able to be involved, someone would carry on my vision and continue the work we have put into it since its founding. I have had the incredible opportunity to go to Washington, D.C. and present G-PACT to my senators and representative and educate them on these conditions. The years since the transplant have given me the time to get G-PACT back in motion, the health to contribute to its success and share my passion with others, develop an amazing team, all who share the desire to ensure that we stop GP and CIP before it claims anymore lives. Along with my own drive to continue fighting for my life has come the desire to help others hold on to their fight as well and have hope that things can get better.

The addition of three more years has also given me the incredible opportunity and great joy of watching my nieces and nephews grow up and provided me with the ability to develop a relationship with them. I was recently able to experience the feeling of seeing my newborn nephew within 12 hours of his birth. I have been able to meet hundreds of people in life who have inspired me in so many different ways. Stories of hopes and dreams and fears and frustrations have come through my e-mail from people who are fighting so hard, see no end in sight, but continue to live as normally as possible. My eyes have been opened to new things around me and I have learned so much about myself as well. I have had three years to focus on making changes in my life where changes needed to be made. I have re-connected with friends from the past. I’ve enjoyed three more years of my Jeep, Spunky, and all the other things I enjoy in life. Without the past three years I never would have experienced the birth of the iPhone, the addiction of Facebook, or the funness of the Wii!

In some ways perhaps my optimism in life is the result of all I HAVE been through. Perhaps being at about the lowest point possible and coming back has helped me perceive the future in a better light. While I recognize that the odds of living a normal lifespan are slim and that every single day of my life will present me with physical challenges, my optimism comes in the fact that I have been given a second chance…something few people are given. I realize that what time I do have is important or else I wouldn’t be here. I know that because of the gift I have been given, I have the ability to accomplish more in a few years than many people accomplish in a lifetime. I feel that my life is certainly not in vain, and am confident that when my life does end that I have done what I was meant to do. When I have my down days, I look forward to my up days. When I have my up days, I do as much as I can to make an impact in my world.

I have been to the point of hopelessness. I know what desperation feels like. I’m not always optimistic either. I struggle on a regular basis over my lack of ability to complete my graduate Art Therapy degree. That’s where my passion is. That’s what I’m good at. I’ve spent hours planning out ways I can accomplish that goal, yet it appears to be unreachable at this time. So I divert my energy and abilities into other things that I also enjoy doing and that fulfill some of the vacancies I have as a result of not being an Art Therapist. Working with kids on a weekly basis at church has helped fill the void I have that comes with my natural ability to connect with kids and my desire to have an impact on their lives. My work with G-PACT has provided me with what I need to fulfill the gaps in my life that are the result of my learned compassion and desire to help those who are struggling and hopeless. My college education in art has been useful in the development of the G-PACT website and the design of all educational materials and additional graphic design work. Without a website or graphic design work, G-PACT would not exist. Who knew that what started out as a desire to be a cartoonist, then an illustrator and art therapist, would lead to what I am doing right now? How could I have known 15 years ago that my diagnosis would have such an impact on my life that it would take me in the direction I have gone? Or that my doodling while bored in class would help me discover my artistic ability and begin my pursuit into the arts?

My life may not have worked out as I had planned, but God knows what He is doing. He has helped me find avenues to pursue which provide me with ways to utilize my multiple passions and abilities, not just in one field of Art Therapy, but instead in multiple fields which have reached out to thousands of people throughout the world. I don’t know if Art Therapy is in my future or not, but I do know that God is using what He has given me, and the limitations that I have on my life, to accomplish many great things. He has helped me combine the strengths He has given me and the weaknesses that I have as a result of chronic illness in ways that I never could have fathomed. How can I not be optimistic when the evidence of God’s workings and His amazing way of combining both the bad and good things in my life into ways to change His world for the better are so apparent? I struggle as everyone does with moments of fear and frustration. It’s only natural for any human. I consider myself to be an optimistic realist. While not denying or downplaying the reality of my everyday life and future, I also see ways to turn that into chances to make a difference in this world and I have hope and vision that I can be a part of making the future better for those I have been given the opportunity to serve.

Tuesday, April 21, 2009

ID and no ID of cause of GP

I went in this afternoon for my weekly Aranesp injection. No quirks there. That all went smoothly. Then I headed over to the physicians center to see Infectious Diseases. The doctor saw me in the ER a couple weeks ago when I was there getting two units of blood. On my way over, my transplant coordinator called and left a message because I couldn't answer the phone at the time.

I listened to the message while sitting in the room with the ID doctor. My transplants doctor's recommendation is to start me on IV caspofungen for five days to treat the thrush. I gave the phone to the ID doctor and she and my transplant coordinator had a very good conversation about the thrush, other infectious issues, the low grade fevers, and what has been done thus far. They swapped phone numbers so I am comfortable they will keep in touch very well.

I have no veins for a central line (long term IV line) which I really need in order to get this IV drug at home. The ID doc wants to move things along, as do my transplant docs of course before it spreads, so she is working on trying to get it set up for home health care to come out to put in a peripheral line every day for me to get the caspofungen. Otherwise, I may have to go to the infusion room at HMC every day to have it done. She wasn't sure if either was possible to set up, but she's going to try. Life would be so much simpler if I could just get a central line and do it from home by myself like I have in the past, but I'll deal with it however it goes.

The problem is, I am allergic to caspofungen so I have to be pre-medicated with IV benadryl. That throws me for a loop and knocks me out. It didn't used to because I had developed a tolerance to it, but since I am not on it so much anymore, it affects me more again. For that reason, I would not be able to drive myself to and from the med center every day. So, hopefully something will work out for me to be able to do it at home, even if it means getting a new IV every day since I can't keep in a peripheral line at home overnight. She also did a chest x-ray because of the cough and that was fine. She said keep an eye on it to make sure it's not getting worse or changing at all. The GP makes me at risk for aspiration pneumonia which I was already at high risk for because of a swallowing disorder I have. So, since the endo showed so much food retention in my belly accompanied by an unexplained cough, that's a pretty big concern. Hopefully it's just a cold that will pass and won't be aggravated by aspirating.

As far as the delayed emptying in my stomach (aka gastroparesis) that wasn't addressed today and won't be with ID. It's something that will require long-term management and considering treatment options, if possible and necessary. The question is not whether I have delayed emptying or not, the question is what is the cause again at this point. In some ways we hope it is meds that can be adjusted, but even that's not a good option. It would be preferred though.

People have wondered at times why I am so adamant about finding the underlying cause for all of my various issues and this is exactly why. I've always been aware that since the underlying cause has never been found that it could just come back and affect my new organs. I've been told that even if they did find the cause, there's nothing they could do or I'm already being treated as I would be for the potential conditions I have pursued. But I just need to know. If there is anything that CAN be done, why not give it a shot? I am in need of an explanation that ties everything together under one name. I just don't believe that one person can have so many different issues without a common connection.

I thank so many of you who have also been misunderstood and misdiagnosed while suffering from so many seemingly unrelated ailments. You've helped me make sense of so much of what has been going on in my body and brought me closer to some things that I think are pointing me in the right direction. I hope that at some point I too will be able to connect the dots.

I'll keep you posted once I know more. I should receive a call from home health care sometime on Wednesday and see if something can be set up to do that infusion at home.

Love to all,

Monday, April 20, 2009

Dumping and not dumping...and thrushing

In short, I have thrush again. No real surprise there...I mean, I wasn't really expecting it, but that is one of the main reasons I had the test done now. I have an appointment with infectious diseases tomorrow (Tuesday) about why I keep getting infections and since I have been prone to thrush in the past they wanted me to check into that before my appointment. That probably explains my recent cough, chest discomfort and sore throat.

Anyway, while down in my stomach looking around, they also found a moderate amount of undigested food left in my stomach even though I hadn't eaten since 2:00 yesterday (Sunday) afternoon. Even that was not very much because I didn't have an appetite yesterday since I was coughing and slept all day! The test was performed around 3:30 this afternoon. With that much food left in my gut after 26 hours it's pretty much conclusive of a re-occurrence of gastroparesis, one of the two conditions I had in the first place leading to the transplant. He doesn't think it's obstruction/blockage related, more on the motility side again. It's complicated by the fact that I also have dumping syndrome, so I'm not sure how we are going to treat one without aggravating the other...but it could potentially explain some recent things.

The GI doc today didn't want to start me on anything for the thrush or go into much detail on the GP aspect because he's never seen me before and obviously that's something transplant will need to deal with anyway. So, I will call my transplant coordinator Tuesday morning to see how to treat the thrush. They are very aggressive in transplant patients because once we get it, it's very hard to get rid of so oral meds have never been prescribed to treat it before, plus I'm already on one that is supposed to prevent it (although all transplant patients know it doesn't work anyway!!!).

As far as the GP goes, it's a matter of learning to manage things again through diet and meds...which is complicated since the two conditions completely work against each other. But, I'll deal with it. I've always known there was a possibility it could return because we don't know what caused it in the first place, but just never REALLY have let myself think that way and never expected it so soon or to be considered "moderate." My hope is that my transplant doc will know how to modify my meds and other treatments so we can keep both conditions under control better than previously. So, while discouraging, I am hopeful that my amazing transplant team will know what to do. Hopefully, I will have a better idea tomorrow. I know they will tell me what needs to be done about the thrush tomorrow because they will jump right on it, but hopefully over time they'll have ideas on managing the returning gastroparesis along with the dumping syndrome. I still feel blessed to be doing as well as I am. The doctors apparently commented while doing the endo on how good my organs look for someone who has been through as much as I have. Thank God and the Pittsburgh transplant team for that!

Having said that, I'm going to eat my orange popsicle to soothe my sore throat before it melts! (the popsicle, not the throat!)

Love to all,

Thursday, April 16, 2009

Inner beauty and strength

A friend send me the link to this video of Susan Boyle, Britain's 2009 You've Got Talent Singer. She is an example of how outside appearance doesn't say anything about what is on the inside. Although initially viewed as being incapable of singing due simply because she is not outwardly beautiful by many people's standards, it is clear she not only did she captivate Simon and the other judges, but stunned the audience members who were so disgusted by her outward appearance in the first place. Our society places too much emphasis on looks when considering ability, potential, intelligence, and work ethic.

Living in a world where I am surrounded by chronically ill and disabled people, and being one myself, I personally understand the perceptions that come with not appearing as one should, according to society, in order to be successful. At times, because of my size, limitations, and physical weaknesses, I am looked upon as incapable of being able to accomplish very much or make much of an impact so not much is entrusted to me without my own personal pursuit of something. This is true of my friends and colleagues who have health issues, many much more outwardly blatant than mine. But if you truly look beyond outward appearance, you often find more someone more beautiful than anyone you have ever seen before. Those who face certain limitations and obstacles in life are often the one's who have the most to contribute and are the most beautiful. Some of the greatest success stories come from those who have been socially outcast or looked upon as being weaker than others and incapable of contributing much, if anything, to the world.

Today I was at the grocery store and ran into a guy working there who completely made my day more than anyone else there. He's clearly somewhat mentally challenged, but he was so happy to do what he was doing and so proud of his work. Even though his only job is to collect the baskets from the carts outside and bring them in, he boldly stated to me as I was walking out the door "look at these baskets, don't they look so much better!" after having spent a good deal of time straightening them out and making sure there were none out of place. As we walked out of the store, my Jeep alarm, which is finicky, started to sound from a distance as another car drove by. He laughed, shook his head, and said "it's still going off. Annoying sound!" When I informed him that it was mine making all that noise, he laughed again and said "it's an annoying noise, isn't it?"

He then ran off to grab another cluster of baskets to take into the store. I imagine that no "able-bodied" person according to our society's standards would do half as good of a job or be nearly as proud of the finished product as he was and be so happy just to have the opportunity to be there doing it! In many instances, he has probably been blown off by others as not having the ability to help based on his outward appearance, but I know if I had requested his help in getting my groceries into the Jeep he would have happily taken me up on it and done better than anyone else who has ever done it. He has probably been seen in the past as being unable to contribute much to the world because of his limitations, yet he certainly made a big impact on my day! If not just the inspiration that came from the pride he took in his work which some would see as insufficient or unimportant, his whole attitude and friendliness was captivating.

Friday, March 6, 2009

Cool, but crazy madness!

Yikes...two weeks since I blogged??? I've been crazy busy!! I've been working at least 16-18 hour days for 8 weeks to get ready for the DDNC. It has paid off! The new website is launched ( and all our graphics work is done and arrived on Monday! It looks very professional and impressive! It's nice to have that all behind me and know that now I only have to focus on packing and other little details before Saturday. I'm leaving on the train at 1 PM Saturday and returning around 2:30 on Tuesday. I will be staying in the hotel on Monday night because I couldn't get a train back to Harrisburg late enough so I will relish in the night away from home without any major stressors! It will be a sweet, too brief, vacation!

I'm STILL battling the infection I developed about four months ago. It seemed like it was getting better, but it's come back...I'm really frustrated. I'm scheduled to go back to the doctor on Thursday for it. I am also scheduled for my annual infusion of reclasp (osteoporosis med) and am still receiving aranesp every week. In spite of that, my hematocrit was very low in Pittsburgh during my last trip and I ended up needing another blood transfusion. We just don't know what's going on...I'm getting a mega dose of Aranesp every week and in spite of that my levels keep dropping. We aren't sure where it's going, but Kareem suspects my bone marrow may not be producing enough red blood cells. At least I am not as wiped out as I should be considering...but that may all hit after the hubbub of G-PACT activity is over.

After the DDNC, I will start focusing on DDW. This won't require NEARLY as much work because we have already been working on it for so long and because I have the graphics work pretty much done now. Those were my biggest projects.

March 13 marks my third transplant b-day. I am celebrating with a group of friends that night. I'm amazed it's been three years and that I have come as far as I have. Who ever knew I'd be back running G-PACT so much and traveling to major events on my own? It's really amazing...

Please do pray for me though this weekend. Since this is the first major G-PACT event I've been involved in since 2004, I'm a little bit nervous about how I will hold up physically. It will be a test for sure as these will be really long days of sitting up and walking without many breaks. It's definitely going to be a test for me...

We have some new, incredible opportunities that opened up for us in DC. I can't reveal what they are at this time, but will update after the event and let you know what became of everything!

Thank you for your support!

Tuesday, February 17, 2009

Temporary Insanity Day

Couldn't fall on a better day for me this year! Celebrate on Thursday by going temporarily insane with me!! (although, some would say I'm beyond temporary...)

Monday, February 16, 2009

a long story short (???) make a long story short......(don't I always start that way and never end up that way???)

G-PACT is going INCREDIBLY well. WOW. I can't even begin to go there. 19 days until the DDNC. I will get everything done, but it's definitely crunch time and I'm not getting much sleep at all! I love it is so much fun to be helping people and planning a trip to represent such an awesome organization which I am not even biased about...;)

We have new volunteers jumping in left and right, there is passion in this field among patients especially who are so driven to find better answers. It's so way cool to see everyone coming together and fight for this!!!! It is a heavy weight on my shoulders at times knowing that thousands of people are looking to US literally, as the hope for them to get better care. But I love it. I love the responsibility and the love I have for all of these people I have never even met is so incredible!!! I hope to have the brochures and printed materials ready for the printer within a week and a half, preferably sooner to allow print and assembly time, and the website I would like to have up in a week. I think I can do it...I'm getting close as long as Pittsburgh doesn't interfere much at all.

Pray for-
trip to Pittsburgh this week. My mom and I are driving up Wednesday. We will either return home on Thursday of Friday, if all goes well. I STILL have some infection left after being on the max of two weeks of this antibiotic, so I am not sure what else is going on. Pray they can find a better treatment for it. I've had this going on since early November!

Sandostatin to continue to work! It is AMAZING the difference it has made!!!!

Me, for my stress levels as I am working so hard for G-PACT right now. Pray that my health will hold up, I'll get everything accomplished, and that I can still get a lot done from Pittsburgh...and that I won't get stuck there any longer than Wed and Thursday!

Finances to come in for some of the events we are planning

Karis to be able to fight this most recent infection

Thank you, and I will try to keep you posted as much as I can!

Wednesday, February 11, 2009

Busy, too busy, entirely busy, and insanely busy....

This will be quick because I have a lot of work to do!

The long acting sandostatin has finally kicked in!!! I've decided to go for it again! My next shot is due on Monday. It's so nice to be able to eat without injecting myself 3x/day, or having to eat within a 3 hour timeframe before it wears off. Now I can snack 24/7 and not have symptoms. I still have some occasional issues, but it's very clear that it has definitely started to kick in. I am so excited as this will give me the convenience of being able to eaat on the run and make traveling much easier!

I've almost finished G-PACT's GP brochure. Now I need to do the one for CIP. I took a break from the website for a little while out of frustration and realizing I need to get the brochure files done in time to get them printed for the DDNC. I'm overwhelmed with work, but making good progress. The growth recently has been amazing...our cause on Facebook has grown by over 250 people in the past few weeks, and I just started a petition group which reached 365 members in just 5 days!! I am getting contacted by people all over, all day, and late into the night. It's very cool to see the growth. It's in part due to Julie's death, in part due to my high publicity activity, and also due to the addition of CIP which draws in a whole new population.

Julie's family has requested that memorial donations be sent to G-PACT. I think that is really cool! She continues to contribute in spite of her death, and will continue to contribute in PR as we will share her story with others to indicate the need for better treatment options. She really made an impact and continues to do so. Her sister is now interested in helping us out as well.

Spunky is such a babe...he is always begging for attention. I wish I had more time to give him more attention, but I do play with him every day and talk to him all day. He just seems to get cuter and funnier every day.

Ben and Kyrie share b-days and we celebrated last night. I took tons of pics! True was his typical dramatic self keeping us all entertained! We also celebrated Celeste's b-day because it was on the third.

I've missed my Tuesday night Bible study all this year because I've been sick or busy. I hope to get back into it soon. Next Thursday I go back to Pittsburgh for my annual bone density scan, appointment with bone doc, Reclasp infusion, biopsy, and clinic...all in one day!!! It'll be nuts!!! Usually I go on Monday, but it's president's day and they won't be open. I got that messed up and am glad my coordinator called me about something else and they mentioned that...otherwise I'd be at the hospital at 6:00 am for biopsy on Monday...and if I'm not grouchy enough in the morning...u wouldn't want to be with me the rest of the day after that!! The good news is that since it's on Thursday I will be able to go to Life Group on Sunday night! I have missed Life Group so much lately because I am always too wiped out after church and kidMin, or have been in Pittsburgh, so I'm looking forward to getting back. I had already taken Sunday off because I got my dates mixed up, so I plan to just stay off and then have more resting time in the morning so I will feel more like going.

On a bad note, I developed a severe headache on Sunday or Monday and a lot of body kept me awake. Finally I decided to check my temp, and sure enough, the low grade fever is back. I'm not overly concerned because this just keeps happening so it's not anything acute...probabloy more autoimmune related given all the other symptoms that come at the same time.

Ok, gotta get back to work...I do need to find some time to sleep...I'm seriously starting to run out of fuel after so many 18-20 hour work days in the past two weeks...

Friday, February 6, 2009

Turning anger to passion

And yet anger turns to passion as my best transplant friend, Karis, lies in the TICU at UPITT after a very difficult, 8 1/2 hour surgery. She was to have her ostomy reconnected, and while in there they discovered a very ulcerated small bowel pointing towards possible rejection or an infectious process. If it's rejection, it's not treatable and she is not eligible for another transplant. If it's an infection, it may or may not be treatable. They will know if the intestine is salvageable after the biopsies come back. She has been in the hospital most of the time since early November fighting fevers, bleeding, infections, seizures, malnutrition, and so many other complications. She's pulled through so many things so many times...I'm amazed at her fight, but not sure how much she has left in her.

This has fueled me even more. G-PACT is fighting even harder than ever to find better treatments for GP and CIP. This has got to stop. We have lost too many people recently to these devastating conditions. It's extra frustrating that there are options available, but the FDA is banning everything because a very small number have major reactions...and even those studies are substandard and not well substantiated.

I'm making a lot of progress on G-PACT. I have one of our brochures very far along which is encouraging and has helped me relax a little bit. I ran into some problems with the website...basically...our host deleted the new one. Fortunately, I have the files still. I just have to republish again. It still has a ways to go, but I am anxious to get it up because so many people are becoming so active and we need a more current site.

I am registered for the DDNC in March and have my train and hotel booked. I am very excited! How awesome it feels to be on the forefront fighting these conditions and knowing that in some small way I may be able to help save or improve lives in the future. I have an awesome team involved who are so passionately pursuing all of our avenues. We are especially bonded together after all the recent issues.

Please keep Karis and her family in your prayers. I believe in miracles...but sometimes this becomes so overwhelming. I take every single person I work with very seriously and personally, so every single death or new challenge weighs me down. In recent incidences, however, these people have been especially close to my heart and very good friends. Naturally, with each death and new complication, my fears for my own health and future are revived. While trying not to look to the past or relive the memories, and trying not to deal with the unknown of the future, it is challenging even to deal with the present right now.