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.