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Ok... where to start... I just watched the story about the 5 way kidney swap that occurred at Johns Hopkins hospital recently. That was truly amazing to me. It's called the donor kidney exchange program. Donors get tested for a specific recipient and if they are not compatible, then they actually donate the organ to another person who is a better match. And another donor who was not compatible with his/her intended recipient then is matched with another recipient, and so on and so forth. People essentially blindly donate an organ to a person in need, which for me is the acme of altruism. It is people giving, literally, giving of themselves to extend the life of a person he/she has never met. The problem... many people either do not know about the program or will not consent to an actual organ transplantation if the intended recipient is not a compatible match. It is wonderful to know that the program exists, but is a little disheartening that more actual donors will not consent to the transplantation process after they have been told that they are not compatible with the intended recipient. I am learning to be optimistic though, and believe that with a little more education people will actually follow through with the donation process. The transplantations are not done until the donors and recipients have each found a successful match. It isn't like the donor will end up going through the transplantation process without the transplant team having found an intended donor for the first transplant patient. I think that may be a misconception that a lot of people have. The other major issue is that the transplant team doesn't really inform donors about the program. The only time it was mentioned to was during a kidney education class that all potential kidney recipients must go through (at least here in Memphis). In most cases, the recipient is not accompanied by a potential donor but a supportive family member. I explained all of the options to my family members who were (and are) getting tested. But they all just look at me like I'm a damn fool. It the organ isn't going to me, then they are pretty much keeping it. And I am not surprise. I mean I come from a fairly poor, disadvantaged family. I am the "weird" one, but I feel that if I just tell a few people then it will become gossip and someone may actually listen one day. But it was refreshing to hear about the "kidney swap" because it gives a lot of us hope. And hope is something that kidney patients desperately need!

Today, I was at dialysis and I woke up to the patient next to me literally screaming. His legs had begun to spasm with cramps. I have never, in my life, heard a grown man scream like that. The only other time I have heard anyone in that much pain from a dialysis treatment was when one woman (not too much older than me) dissolved in tears when leg and arm cramps began moving up and down her body. But he was literally jumping out of his chair in pain. It scared the hell out of me because I was in a pretty deep sleep and all I heard was this man screaming and when I looked over at him, he just flew out of his chair. He always comes in with six to nine kilos (the equivalent of thirteen to twenty pounds of excess fluid), and once he gets on the machine he eats a biscuit sandwich and one or two moon pies, and drinks two sprites. It amazes me that nothing like this happens to him on a regular basis. We are normally told not to eat on the machine because it takes about three hours for food to digest and so the machine will not clean the impurities in the blood. It's like he's defeating the purpose of the actual treatments.

It is strange how people act/react to me. This morning at about 5:20 I arrived at the center and I went to the weigh area to get my pre-treatment weight and talk to some of the other patients, and one of the patients, Mr. Tate, gave me ten dollars. That stunned me. But he told me that he wanted to give me a blessing (which it is). I looked at him and smiled, and he told me to do what I have to do (regarding the GRE). It made me smile. I decided that I am going to make him a berry or peach cobbler for Thanksgiving. I think he'll enjoy it. And then Friday, one to the gentlemen at the center (I have no idea what his function is, I think he orders materials for all of the Davita centers in the area). But he came and asked me how things were going. I mentioned that I had been working on a book, and he asked how it was going. I told him well, but that I had put it on hold to study for the GRE, we talked for a few moments and then he went on about his duties. But as he was leaving, he woke me up to tell me goodbye. That made me feel pretty goood, though I still can't fathom why he woke me up! But that made my day but I think that is because if I could I would eat him. He's an attractive, older, white guy. But anyway, he made my day. Then I had to get up on Saturday and take a practice exam. That kind of set a somber tone for my weekend, but I made it through it!

And now the holidays are here. I realized the other day that I really hate the holidays, and I have for a long time. It all depresses me because I start thinking about when I was little, my life and where I thought I would be in life... and believe me this is not the place I imagined I would be. I am afraid of taking the next step because I am afraid of what may be in store. It's the reason I have avoided taking the GRE, and have avoided making other major decisions in my life. And everything seems to increase tenfold around the holidays. This year, I am going to try be positive and make the decisions that I need to make, take the steps needed to get where I need to be... maybe I'll let you know how that one goes...

A day in the life of...

Can I pretend to be someone else for the next twenty four hours? Pretending to be me is too damn hard at the moment!!

Sobriety

This week has been one of those sobering weeks. Four people have died this month (which is a bit uncommon for me), one gentleman will loose his insurance coverage because he is an illegal alien, and another gentleman completely lost his foot due to diabetes complications. Looking at all of this from my point of view made me realize that most of the things going on in my life are trivial. I spend too much time being angry and resentful over the most minute things. Yes, I am fighting for my life, in a sense, but I don't have to deal with some of the other medical problems that other dialysis patients have to. I am not diabetic. I do not have fluid restrictions. I can drink and eat most liquids because I can still go to the restroom. Most patients loose urinary function and so can only intake about 32 ounces of liquid each day. I have a handle on my high blood pressure, and most of the problems that came with the kidney failure are slowly, but surely correcting themselves (the anemia, bone disease, acid reflux, etc). I have not lost any limbs or my eyesight. And I have a support system that is out of this world encouraging me each day, even if they can't exactly understand what I am going through.

I have watched people completely give up and give in to the sickness. I remember with reverance those who fought to the last second. And some deaths were unexpected. I saw one woman one day and the next she was gone. I saw one lady on Wednesday and she was gone on Friday. It's scary because it was so unexpected. When I go home after dialysis, I expect to see the same people during the next treatment, but, apparently, God has other plans. It all makes me think about my own fallibility and whether I have or will live my life to the fullest.

Death is a very scary thing. I never thought I would be this close to it. It is different when you are young because you do not fully understand all that is going on around you. But when you are older, things sink in more. Death becomes more real, more concrete. It makes you appreciate the people around you. It makes you value relationships. It lets you know that things in life could be a lot worse, that God has, somehow, decided that being part of all of this is crucial to your growth and development as a person...

Why do we define everything... everyone?

Why do we, as humans, define the world around us? We define everything from our everyday relationships, what type of person we are, the types of people we are compatible with... there are a million things that we define. People look at my A/V graft and I am defined as a dialysis patient, or look at me and tell me there is no way I am from a rough neighborhood because I do not fit the definition of women from that particular neighborhood... Everything, everyone, every situation has some sort of definition. And I must admit that I have fallen into that unseen trap of wanting to define everything and everyone around me. And it annoys me when I do it. But it makes me wonder if anyone else feels as I do... I hate being categorized in this group or that group because people assume that I should be this or that because of some outward appearance, flaw, etc. I hate being simply a dialysis patient. I hate being the atypical black girl because I am bilingual, because I love to try different foods, music, cultures, because I am open to trying new and different things. Many people in my own family think I am strange because I am the way that I am, but my mom has instilled a lot of those values in me, so I wonder if they thought she was a little strange as well? I love being the person that I am, but I don't like the defintions that come with being who I am. I know there is no such thing as normal, but people have a way of making you feel extremely strange if you don't, at least, conform to certain ideologies. Maybe all of this speaks to the fact that I may be a little uncomfortable with either some aspects of myself or the world around me... I don't know... I do know that I am tired of people pointing out my differences, as if I already don't know that I have a graft in my arm, that I am dialysis patient, that I enjoy listening to jazz, learning to salsa, and reading classic novels instead of doing whatever it is that a 26 year old in this area does (which mainly involves drinking and club hopping). But why do people use such interests to define who I am as a person. Those traits only make up a small part of who I am. I am me, sister, daughter, friend, dreamer, then I am a dialysis patient waiting for a transplant, and whatever else people see fit to define me as. Maybe I am thinking too much about what other people think and I should just focus on me, myslef, and the things that are going on in my life at the moment...