Day to Day Life and Dialysis

The blog of a 26 year-old dialysis and liver patient in Memphis, Tennessee giving a day to day (or week to week... or whenever she feels like telling you) recount of the ups and downs of life at the moment.

Monday, November 20, 2006

Untitled

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...

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