Today I met with the surgeon. Due to previous surgeries in my abdomen, I am not capable of using peritoneal dialysis. This is completly unfortunate. Now they will have to map out my veins, and then surgically sew two together, typically on my forearm, for hemodialysis. I will have to be dialized three days a week, for four hours each session. I can not believe this news. I am so devastated. I don't even want to think about it right now. I feel like I can't catch a break.

I've been talking to my parents on the phone a lot lately. They are going to come with me to see the surgeon. I've been avoiding my extended family. I know my mom and dad have told everyone, but I just can't seem to face them. It's a weird feeling, having people know something about you when you haven't had the chance to tell them yourself. It just feels akward to be around them. My mom tries to pretend that she's not worried, but she's never been very good at lying. My dad on the other hand, talks to me like nothing has changed. It's nice to have that, but we also don't talk about my condition at all. It makes it harder to talk about. I just let him pretend nothing has changed. My brother is just distant, which I expected. He hates doctors, hospitals, and the idea of germs in general. The medical world tends to freak him out. I'm patiently awaiting my appointment....

Today my parents haven't even called me, which is unusual as we talk everyday. I'm not upset though, I'm glad they are giving me some time to process what has happened. I'm sure it was my dad's idea to give me some space; if it weren't' for him my mom would be over here right now insisting I go to the ER. Anyways, I'm scheduled to see a surgeon this week. This will hopefully determine what kind of dialysis I will be a candidate for. I'm hoping I can do the PD, so that I can do it at home. I'm really putting all of my hopes on this. I'm trying not to let myself want one or the other, as I can't really control it. I just know it will be devastating to have to have hemodailysis three days a week for 4 hrs. I don't know how I will even fit that into my life. It seems it would control my life.

Yesterday I finally made it over to my parents house to tell my family the news. I started out by saying that it was bad news that I had to share with them. This immediately caught their attention. I then proceeded to tell them, very matter-of-fact like, that I had kidney disease. Their eyes were huge, and their mouths almost hit the floor. After the initial shock, they began to ask questions about what kidneys do in the body, and what this disease means to me. I know they are all really scared, but they pushed that aside and rallied around me. I can't express how comforting it is to have people you love cheer you on at a time like this. After discussing it at length, I told them I had to work and left. I don't really have to work, but I just needed to get out in order to breathe. This is a huge burden that has been lifted off of my chest.

I am getting ready to drive to my parents house and speak with my family. I have told them that I have something that I need to discuss with them. I am afraid that they think that I am about to announce some sort of accomplishment or award. Maybe even announce that I want to go to med school like my father and uncles insist is what I should do. I can't remember a time that I had to deliver bad news. The closest thing is when I got my first speeding ticket my first year of college. Definitely not something of this magnitude. In my family, my brother and I are expected to be successful. We are the first people on my mother's side of the family to ever go to college. My parents life revolves around encouraging and teaching my brother and I how to be good, dependable people. I have always felt that I must live up to high expectations so that I do not let my parents down. Do not think that my parents are too hard on me. I am the one who is hard on myself. I just want to repay my parents by getting an education, something they both regret (to some extent) they didn't do. Telling them this news makes me feel like I am letting them down. Like I have failed at keeping my body healthy. I'm not sure what I'm going to say, although I have gone over several scenarios in my head.

Tomorrow is going to be the day. Tomorrow I am meeting with my family in order to tell them what is really happening to me. Hopefully everything will go ok. I'm not sure what "ok" is, but I hope it works out. I really don't want to tell my mom and dad. I just wish someone else would do it for me. I guess we'll see what happens.

Well, all I can say is that for the last few days I've chickened out. I haven't been able to get my family together to tell them. They all have crazy schedules and are never home at the same time. I want to tell them all at the same time, so I don't have to go through it over and over. I'm hoping that this weekend I will be able to round them all up and tell them. I keep making up scenarios in my head. I'm trying to plan out how the conversation will go.

I've decided that tomorrow I'm going to take a huge step and actually tell my family members. I know they are going to be blown away. I'm not even sure how to tell someone this kind of thing. I just don't want to see the look on their faces. I'm afraid that I'll cry. I want to be the strong one. I don't want anyone to see me cry. I know once I start talking it's going to be hard. I just really need the support right now. I'm all alone.

I'm sitting here...staring at the computer screen. I literally have no thoughts in my head. I'm looking at my calender, with all the highlighted appointments and activities. All things that seemed so important to me. Ironically, it makes me want to laugh. My schooling was the most important thing to me. As if becoming a nurse would somehow make me the happiest person in the world. I just can't believe how caught up we get in daily routines.

I saw the kidney doctor today...I'm still process what happened. He confirmed that I do have renal failure. My BUN and creatinine levels are all way too high. He prescribed procrit shots for me to self administer. I have to meet with a surgeon in order to determine which type of dialysis is right for me. I am in a state of shock right now. I feel like I'm just watching everything happen, yet I'm not really here. I don't know what to say. I'm completely in another state of mind. Maybe after a few days this will all hit me, and then I can mourn. As for right now, I feel disconnected from the world.

I finally have an appointment scheduled with the nephrologist. There was a cancellation, so I am going to meet with him tomorrow. I have to say, I am nervous and excited all at the same time. I still feel like part of me doesn't believe any of this. I feel like I will get there and he will wonder why I am one of his patients. I think this dr is going to reassure me that the results were indeed incorrect.

Today I feel fine. In fact, I'm not really sure if this doctor was even right in diagnosing me with renal failure. I feel fine. He didn't stay to explain any of this to me, and if it was important I think he would have. I don't feel like I'm sick. I'm confidant that once I see my kidney doctor, he isn't going to find any problems. You hear about medical mistakes all the time on the news, I think there is a good probability that this is one of those times. I'm just glad that I'm seeking a second opinion.

Well...today is just another day. I don't really have any thoughts or feelings today. Mostly my mind just wonders during the day, thinking about the impending doctors appointment. Not much else I can really do. Anytime I am online, I am looking up and reading things about renal failure. There is all this information about how a person on hemodialysis has to have a special diet for it to be beneficial. You have to watch the foods you eat that contain potassium, which turns out to be a lot of foods. You also have to watch how much you drink. It's all really confusing, and I'm not sure if any of this even applies to me. Information is my only companion right now.

Well...I can't get into the kidney doctor until next week, unless someone makes a cancellation. At least I've calmed down since yesterday. I was pretty upset with the situation. I guess right now I just have to "wait and see." Of course there is nothing more I hate than the "wait and see" game. I'm the type of person who likes to fix things. If there is a problem, I want to know what I can do to fix it. I have no problem immediately throwing myself into action to try to help a situation. Unfortunately for me, this is not one of those times. There aren't going to be any speedy fixes. Even if I do go through with the hemodialysis, it takes time to have the fistula placed. Then it takes time for it to heal, before it can be used. I guess I feel like a ticking time bomb. This is all really hard for me to handle, especially without my parents. I'm considering telling them, but I can't decide if I should wait until after the doctor's appointment. I just realized that if I wait that long to tell them, they might be hurt that I didn't come to them sooner. I just want to show them that I know whats going on, and that I'm in control of the situation.

You would think that someone who has been diagnosed with a deadly disease would be able to get a doctors appointment! Apparently not. I have to wait a few days before I can be "seen". Don't they realize that my kidneys do not care that the doctor is on vacation for a few more days, and that it doesn't matter to them that I can't get in for a few more days? My kidneys don't work. I need a doctor. End of story. I'm extremely aggravated right now about the lack of help. Why aren't the doctors rallying around me, trying to fix me? Why are they just sending me out to try to navigate these waters by myself? In case they've forgotten, I've never had kidney failure before. I don't know about all the resources that are available to people with my condition. I feel like my doctor has completely abandoned me.

Searching for a doctor...

Today I'm still thinking about my illness and what it means. I'm searching for a kidney doctor that will hopefully help answer some of these questions. I realize that I need to see someone soon, but I also what a doctor who will take the time to explain to me the ends and outs of this disease. I want someone who will give me all of my options and their possible outcomes. I want the pros and cons on everything. I just want to be able to make an informed decision. I think the health care system owes every patient that right. I still haven't been able to tell anyone yet. Although at times I feel I'm about to burst, I know can't tell my family/friends yet. I need more information!

1/9/08

Well...I attended a class at Miami Valley Hospital about renal failure. They had a nurse educator there who really explained things in easy terms. I remembered a lot of things structurally about the kidneys from A&P, but this really helped explain what these problems meant for me. For example, the kidneys excrete a hormone called erythropoietin which stimulates the growth of new red blood cells. Without this hormone, my body doesn't know to make more RBCs. This explains why I'm so tired all the time. I don't have enough RBCs. The nurse said I should be on a drug called procrit. This is a shot that is given subcutaneously, and it stimulates the body to make RBCs. She was shocked to know that I was not on this drug. I'm going to have to schedule an appointment with a nephrologist in order to figure out whats really going on here. My doctor told me this was fatal, but all these people at the meeting are going to be on dialysis. I don't see why I can't just be on dialysis. There are also different types of dialysis. There is peritoneal dialysis (PD) and hemodialysis. PD is where they surgically insert a port into the abdomen. You can do the treatments at home. What you do is attach tubing to this port and insert sterile water. Then later you drain all of the water out. The body's peritoneal wall is used as a filter, and removes all of the toxins that the kidneys are failing to do. Hemodialysis is where the blood is being removed from your body, cleaned, and then returned. It is a continuous process that takes 4hrs, three times a week. I really don't want to have to do that. It also requires surgery prior to any treatments. The surgeons have to place a fistula in your arm. A fistula is when they sew a vein and artery together, usually on your arm, in order to have enough blood flow for the hemodialysis. Anyways...these are the new things that I have found out today. I'm feel pretty good about my chances. I think that when I see this kidney doctor, that we can set up a game plan. Thats all I need, a plan of action.

Day one

The doctor just came in and told me some terrible news. I have end-stage renal disease, which is a terminal illness. Terminal...that word just echos in my mind. It just sounds so final, but then again I guess death is final. I keep going over the "whys" in my head and it's driving my crazy! I don't really even know what all this means. The doctor was pretty short with me, so I had to go home and do some research on my own. I wanted to call everyone I know, but at the same time I don't want them to have to bear my burden. I'm not going to tell them...at least not until I've come up with some information about the situation. After I tell them I know they're going to be firing questions at me left and right. I want to be able to answer them. I know people go to dialysis when their kidneys fail, maybe I'll do that. I need to find out about transplant options. I know people have kidney transplants successfully. I just wish I knew all of my options. I don't even know if I'm a candidate for any of these. I am more worried about my family and what this means for them than anything. How do you tell your family that you are going to die unless there is some sort of treatment option available? What am I supposed to do, send them a card in the mail? I don't think they make cards saying, "oh, by the way, I'm probably going to die." There's so much that I was worrying about that doesn't even matter now. Nothing like a diagnosis of a terminal illness to put things into perspective! I guess the only thing I can do right now is gather as much information and treatment options as possible.