Where, oh where, to begin? Perhaps a little personal information would be a good place to start. My name is Nick, I am 29 years old and I live in Iowa City, IA, and I am currently on dialysis. I work part time in food service, delivering pizzas and making sandwiches, although my true passion is writing, which if you read to the end of this, you will probably notice. Contrary to the name of this forum, I don't hate dialysis, but I can't say I love it either. I suppose I tolerate it, and I view it as just another experience from which I may learn, grow, and expand as a human being. It does take a bit more time and energy than other experiences of this same genre, but I try to see the silver lining on every dark cloud that passes over my world. In case you haven't gathered already, I tend to have a pretty positive outlook on life, which helps immeasurably with the ways in which I deal with my current situation. As they say, laughter is the best medicine.I was first diagnosed with kidney failure at age 18, in Feb. 1998, a result of a hereditary condition I share with several other family members known as Nail Patella Syndrome, which is a rare disease that, in even rarer instances, can cause certain organs to degenerate. I spent a few months on dialysis before receiving my first transplant in July of that year, a precious gift from my father, who has had no complications and continues to thrive. The following fall, I went off to college at the University of Iowa, where I contracted mono at some point, and due to my immuno-suppression, the viral cells that had invaded one of my lymph nodes proliferated into cancer cells, what is called a Post-Transplant Lympho-proliferative Disorder, or PTLD, for short. PTLD is another one of those rare afflictions that ocurs in a small percentage of transplant recipients. Aren't I lucky? One thing is for sure, I am a rare breed.After six months of chemotherapy, the cancer was eradicated, and I went back to being a (somewhat) normal college student. After taking some time off to search my soul, and some shuffling of majors, I eventually got my BA in Religious Studies, with a minor in Philosophy, in the Winter of 2006. Before you ask, no I am not a practitioner of any particular religion, although I am quite spiritual, and I have some measure of respect for all of the world's major religions, and most of the minor ones, although the fundamentalist varieties tend to irk me more than a little. But to each their own.This is the part where I talk about my mistakes. While I was studying religion, I became interested in ideas of self-healing that seemed to crop up time and time again in relation to areas of religion in which I took particular interest, such as shamanism, yoga, or faith healing (i.e. Christian Science, and other groups who avoid Western medicine). To say I got a bit caught up in these ideas is, perhaps, an understatement, and after becoming a certified Reiki practitioner (a form of hands-on energy healing), I started to immerse myself even more deeply in the academic study of these concepts. I kept telling myself I was going to put them into practice, but I neglected to do so, and concurrent to this period of my life, I began to become greatly disillusioned toward the Western medical model. The outrageous costs associated with the medication and treatment, which I was mostly able to overcome by taking advantage of patient assistance programs and other social programs for financially poor people such as myself, coupled with a decline in the way I felt I was being treated by hospital staff and doctors, eventially drove me to forego the care that had been prescribed for me, and to which I had adhered for several years. I stopped taking my medication and stopped going to the doctor altogether, and I told myself that I would utilize the other methods of healing that I had learned about, although I still neglected to do so. I realize now how foolish and selfish these decisions were, but I can't go back and change them, so I can only hope to learn from them, so I don't repeat them in the future. If I have any regrets in life, it would be the decisions I made that led me to this point, to squander the gift that my father so selflessly sacrificed for me.After nine months without medication or having been seen by a doctor, I was feeling pretty bad, as you can probably imagine. I knew my blood pressure was out of control, because I was having very bad headaches, and so I finally decided to suck it up, admit my foolishness, and return to the doctors. Much to my chagrin, they told me my kidney function was very low, and that I would need to be prepped for dialysis as soon as possible. This was in late summer/fall 2007. In Nov. I had surgery to install a fistula in my left arm, and I started hemodialysis in Jan. 2008. Due to some personal complications and hoops I was made to jump through, I was not placed on the transplant registry until last fall, and there may still be some complications surrounding that, which I intend to write about in another post (stay tuned!).As for dialysis, like I said, I tolerate it, spending most of my time reading or watching my favorite shows on my laptop. I go for 3 hours, 3 days a week, so it's not too bad. I try to always treat the staff kindly and respectfully, because they are just doing a job, and I don't want to make that job any more difficult on them then I assume it already can be. For whatever reasons, based on my experiences and what I have learned over the years, I am able to find humor and lightness in most any situation, including my own suffering. Some may think I'm strange, and they would probably be right, but I am me, and that's all I know how to be. I love life, in spite of it all, and I know that the future holds bright things for me, kidney problems be damned.So now you know quite a bit about me, and I look forward to getting to know a little bit more about all of you. I love healthy discourse and constructive dialogue, and I also love to help other people, so I hope I am able to engage others on this forum. To all who made it this far, or just skipped over the middle parts, take care of yourselves, and have a wonderful day!
I Hate Dialysis Message Board
I Hate Dialysis Message Board
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