I have no quality of life. All I am doing is surviving day to day. When I haven't become infected with the latest opportunistic infections, I'm too exhausted to do anything. I sleep through most of my day, and night. I'll have to endure many more years of this in hopes of receiving a kidney transplant. I've made up my mind that this is not worth living for. This sounds incredibly terrible, but if you lived a day in my shoes you would understand that I am not living at all. I simply do not want to be in pain anymore. I have always been a fighter, but I think it's time I learn when to throw in the towel.

I'm really pissed off that my doctor was stupid enough to give time too much of a medication that is excreted through the kidneys, that obviously don't work in my body. I've never been so out of my mind before. It was rather terrifying. I tend to wonder if people who do drugs experience anything similar to what I went through. If so, I have no idea why they would continue to use them.

Last night was horrible. My doctor gave me the same medicine used to treat herpes for my shingles. This is a typically treatment. The only problem is he gave me a dose well over what a patient should have when in renal failure. As a result, it sent me over the edge. I was completely delirious. At one point I even thought I was on a roller coaster ride that chopped off people's heads. My parents luckily got me to the hospital where I was dialyized to remove the toxic medication. This has been the scariest time of my life.

Today I woke up with horrible pain along the right side of my back. When I looked in the mirror there were red circles all over my back. I went to my doctor, and found out I have shingles. These are incredibly painful. My immune system is low due to all of the dialysis, which allows for all sorts of opportunistic infections to creep in. It takes months for these to heal. Until then I have to endure the pain.

Today I spoke with my kidney doctor. Apparently the type of kidney I need is the most rare type to match. I can't say I'm surprised, I haven't gotten one yet and people typically have received them by now. I just wish he would have told me this before. I became very angry at him when he told me this news. How can a doctor just withhold information like that from me? I think I'm entitled to know the whole picture of my treatment outlook. I don't think that's asking too much. He said it could be a decade or more before a kidney would become available for me. I'm in such shock right now. Ten more years of dialysis. I don't know if I can do that.

Today is pretty much the same as everyday. I need a kidney and there isn't one available. I hate dialysis. I've decided that I cannot do this for the rest of my life if a kidney never becomes available. It's very strange though, trying to decide how long you should live. How does a person even begin to think about how long they should try to fight in order to survive? Is it even ok that I would make this decision? I don't want to die now, I'm so young. But I can't see me living to be a grandmother while continuing dialysis.

Today is a nice day. I think I'm going to sit outside in the sunshine and read a book. I think it might be good for me. I just want to do something to get my mind off of all these things that I've been contemplating lately.

I'm having a really hard time. I'm not sure if I'm being punished or not. I've never really gone to church or been religious, and my education in the medical field has deepened my scepticism. I'm not sure if things happen for a reason, or if we're floating around accidentally knocking into each other, or a combination of both. To me, stories from the bible seem as realistic as fairy tales. This is not to be interpreted that I am a mean and hateful person. I consider myself humble, loving, passionate, and empathetic. I believe in doing what is right, not what is easy. I consider keeping ones word very important. Being a good person and a contributor to society is very important to me. I genuinely want to help others and do something worth wild. Does not believing in God make me deserve this?

It's very bizarre to have a body with an organ that is failing. It feels like your body is rebelling against your desire to live. It's hard to describe. It's very strange to realize that your mind is separate from your body. I want to yell and scream at my body, tell it that it will not survive with it acting this way. Unfortunately my body seems to be deaf.

With dialysis and being sick I haven't been able to do much lately. I'm just now starting to feel better. I've made an appointment with my doctor to see if I'm going to be able to get a kidney transplant. I've been waiting for so long, and the dialysis has been awful. I haven't been able to do anything but sleep in between treatments. This is no way to live a life. I'm going to sit down and demand answers from him.

Well...still feel like crap. My doctor wasn't kidding when he said I was going to be sick for a long time. I thought a week was considered long, but today is one week and I'm still sick. I can't even explain how tired I am. I sleep all night, and even take a nap during the day and I'm still wiped out. How can someone be so tired? All I've done is sleep. Not to mention this constant headache. I feel like I walk around in a haze all day long. I'm beginning to wonder where my immune system is.

Sorry I haven't been writing, I was lucky enough to catch the flu at the hospital during my dialysis treatments. It has been a terrible week. I'm already constantly fatigued due to dialysis, and then to add the flu on top of that, I have been exhausted. I'm so angry I got the flu when I even got my flu vaccine months ago. That's just my kind of luck I suppose. I am feeling better, but I still have a bad headache and am constantly tired. I'm sick and tired of being sick and tired. I just want to feel better.

I've been really tired today, and haven't done anything at all. My family all thinks I'm depressed, and maybe they're right. I just don't feel full of energy and don't feel well enough to join in family activities. I just want to get better, and I hope that tomorrow I feel better enough to do simply things like cleaning.

I just don't understand how someone like me, who wants to help people, is being afflicted with this disease. I want to do so many things in medicine to help people who are sick and suffering, and yet I am afflicted with a disease that is preventing me from doing this. How can that be possible?

The doctors keep wanting to try to place another fistula in my arm. I understand the risk of infection with the catheter that I now have, but the fistula didn't work the first time. I don't really see a reason to place a permanent fistula in my arm, when dialysis isn't going to be permanent. I'm just doing this while waiting for a transplant. I'm not going to do it.

I was so tired from dialysis yesterday that I haven't done anything all day. I pretty much lay on the coach all day and watch movies, while I doze in and out. I am twenty one years old, there is no reason that I should have no energy. How am I supposed to have a life if I can't even stay awake? I don't want to do anything with my family, because I know I'll get too tired and have to sit down. My mom wants to go shopping and I know I can't, because I know I can't walk all day at the mall. This is horrible.

Well, nothing new to report. Dialysis sucks. I don't know how people do this. I'm not sure how long my family can arrange their schedules to go out of their way to take me to my treatments. I feel like I am putting a lot of responsibility on their shoulders, and I don't like that. I don't like to have to depend on other people. I don't know what to do, I'm just hoping for a transplant.

I still can't believe that there isn't a better method for dialysis than this. The insurance is a joke. I constantly have to have a social worker working hard so that my insurance will pay for this torture. I repeatedly receive bills saying I owe thousands of dollars. As if I don't already have enough to worry about, the insurance company is trying to get out of paying for my treatment. I just can't believe all of the red tape that goes along with all of this.

Today I arrived for dialysis and the nurses were very far behind. It took me three hours to get in, and then another 4 hours on the machine. This is insane. People who didn't show up for their earlier appointment got to go ahead of me, even though I was there on time and waiting extra. Not only is this frustrating for me, but for my family who takes me and picks me up. Its not that safe for me to drive myself, as sometimes my blood pressure is really low after my treatment. They often hold me over for that too. They shouldn't tell you it takes four hours, three days a week. They should just tell you that for three days a week, you have to devote yourself to the hospital and when they can get you in at their leisure.

This is horrible. I don't even know why I'm doing this. I cannot live the rest of my life like this. I have to get a kidney transplant. That's the only option. I'm tired everyday. Dialysis is like torture. I can't keep doing this for very long...

Today I thought that I'd be feeling better, and that I might go out shopping to treat myself for making it through day one. However, I am so exhausted that I cannot even get off of the couch. I'm out of breath and tired after walking to the bathroom. I can't believe this. I really thought this was all supposed to make me feel BETTER. I felt better before yesterday. I'm trying not to get too down, maybe it takes awhile before the proper effects can take place. I'm also upset with patients who think they will be cured after one day of taking their medicine. I don't want to be like that, so I'll just have to wait and give this some time. I have to go back tomorrow anyways. I'll just wait and hope that time will help this take effect.

Today I had my first round of dialysis. I was really nervous going into it. It's so mind numbingly boring! I have to sit there for four hours! Next time I'll be bringing a book to read. It didn't hurt, but the nurse got blood all over my shirt, and I didn't appreciate that. My mom took me, and they let her go back with me for the first part of it, since it was my first time. She won't be allowed to come back with me anymore though. Only the patients are allowed back, no family members. I can't believe how tired I am. I think I'll be going to bed extremely early tonight. Hopefully I feel better tomorrow. I wonder if I'll feel any different after a day of dialysis.

Today I still don't have much hope for my dialysis. I think I could really benefit from a vacation. Maybe a short trip somewhere to get away. The only problem is that soon I will have the catheter placed in my chest, and then I will begin my treatments. That means it would be difficult to travel anywhere, as I would have to make arrangements wherever I go to have dialysis treatments there. I feel like I am tied down, and my dreams of traveling have been taken away from me. I wanted to attend medical mission trips to other countries. I don't think this will be happening if I have to go to dialysis three times a week.

My dialysis port is being scheduled to be placed next week. I still can't believe this fistula doesn't work. My parents are getting pretty upset as well. I'm not really even sure how I'm supposed to feel about all of this. I just feel like my body is rejecting me. First my kidneys fail, and now the fistula doesn't work either. It's like my body doesn't want to be helped. I'm sure when I get this port I will get an infection as well, and become septic.

Well...I received some really disappointing news today. Remember the fistula that they placed in my arm, the one that I've been waiting over four weeks to heal so that I could start dialysis treatments? Apparently it didn't work. I guess I don't have the best vascular system either. The next plan of action is to insert a catheter into my subclavian artery or vein and have a little port like system. I'll have the ends that connect to the machine poking out of my chest. It's normally used for emergency dialysis. I didn't even get a chance to discuss donor options. I was so overwhelmed by this news, and the doctors warnings about the risk for infection. Due to this risk they want to try to make a fistula in my other arm! This is beginning to get a little ridiculous.

I'm supposed to see my doctor tomorrow in order to evaluate the effectiveness of my fistula. I am hoping to also discuss donor options extensively with him. Hopefully I'll be able to get a kidney transplant soon and won't have to endure much of the dialysis. I'm not really sure how I'm supposed to fit dialysis into my busy schedule, but I suppose I don't have a choice.

This weekend I spent some time with my family. I told myself to suck it up and get on with life. I tried to be cheerful, but mostly I still wasn't myself. I find myself constantly daydreaming, and I even feel like a bunch of things are happening around me, and I'm just watching them. It feels like I'm watching a movie, except it is really happening. Of course my family notices how out of touch I've become. They think that making lame jokes will snap me out of my haze. This just makes me want to be alone even more.

I pretty much feel the same way as yesterday...lost. I feel like there should be a doctor or nurse here to hold my hand and tell me everything is going to be ok. However, that is not the case. I am on my own in this. I would have to be hospitalized to have that kind of attention. Everyone around me is scared. I'm scared and seeing my families worried faces doesn't help any. I'm supposed to be the scared one, and they're the ones that are supposed to stand by me and give me support. This whole time I have felt like it is I that have been supporting my family. I was so afraid to let them know I'm terrified, that I haven't been able to deal with any of this myself.

Today I seem more confused than ever. I think the support group just stirred everything up in my head. I was content not to deal with it right away, but now I feel that I must examine a few things. Mostly I'm concerned with why this has happened to me. I can't seem to come up with a satisfactory answer. I've never been that religious, so its not that I'm blaming God. Mostly I just don't feel that I deserve any of this. How can I get this disease when I have set out on a mission to help people. I want to do good things, and help care for the sick. I want to save lives. How is that someone who wants to help society is being removed from it. I'm going to have to devote just as much time to nursing as I will to my dialysis. Is this a challenge simply to see how bad I want to be a nurse? Why is it that all the horrible people you see on tv that have committed violent crimes are all healthy? Why aren't they the ones to develop this disease. Maybe going to dialysis treatments would give them something to do, instead of committing crime.

I attended the support group today. It was amazing to see how many people in this area have kidney failure. It was rather shocking. It was also very strange. Most of the people developed kidney failure due to diabetes or hypertension. One person didn't even know they had hypertension until they found out their kidneys were failing. I can't believe that in this day in age of modern medicine that people are suffering like this. Why isn't there better screening for things like this? Why didn't my doctor suggest I have my blood pressure taken on a daily basis? All of this would have been avioded if he would have ran more tests. Just because I'm young doesn't mean that I'm perfectly healthy. I don't understand why any of this is happening to me.

I've located a support group in kettering. I'm excited and nervous all at the same time. It is a support group for people like me, and their families. I'm not expecting my dad to have any interest in this at all. My mom would probably like to come though. I'm sure she would love to ask questions about what to expect. I'm not sure I want her to come though. This could be my one place to be me, without people interrogating me and watching me. I might actually fit in with these people. I think I'm going to check it out.

Today I starting to wonder if I can find someone to talk to that is going through the same thing as me. I'm thinking of finding a support group or something. I don't know though, I guess I feel kind of silly. It would be nice to speak with someone who is going through the same thing. They might even have a few pointers on what to expect, or how I should proceed with treatment. I'm going to try to find one listed in dayton. I think it might help me. I know my family wants to help, but it is hard for me to always talk to them about what is going on. I think half the time they don't even understand what the kidneys do. I'm sure there is a group out there. They have support groups for everything these days.

Today I'm not feeling so well. I'm really tired and just don't feel like myself. I'm trying to get as much rest as I can, but when I don't stay busy I tend to start thinking about the worst things imaginable. I really wish I could get rid of my imagination. It tends to get carried away. Mostly I just want something to happen. I don't know if I'm going to get better, but I'd like to just know right now. I have not knowing. It would be easier to deal with if I knew right up front that I wasn't going to make it through this.

Today has been a pretty good day. I've seen a lot of my friends lately. They are all interested in whats going on with me. It was nice to talk to them about it. I'd rather talk to them, instead of my family. All of my family seems to watch me like a hawk, as if they can see my kidneys if they stare at me long enough. My friends provide me with another outlet with fresh ideas. I think they are a little more objective. My family means well, but right now they're driving me crazy.

Today someone asked me how I was doing and I responded with, "I'm fine." I guess it caught me off gaurd. I'm not sure where that came from. How can I be fine? With all of this wait and see stuff, I feel like I'm starting to deny that anything is happening. I'm not sure that I even want to change that. It is better to feel like everything is "fine" like before.

I'm still not sure whether or not this fistula is going to be functional. I guess they won't really know until it heals more. I'm just trying not to worry about it. It's hard to forget about it when I have to wear a glove on my hand around the house just to keep it warm. I've been in pretty good mood lately. Better than I've been in a while. I even had lunch with an old friend from high school. I'm trying to still live my life, but its hard not to think about it all the time.

Today I’m not so groggy from the procedure. Unfortunately, I am afraid that it was unsuccessful. My right hand is cool to the touch, and my pulse is weak. I was told that I would have a decreased blood flow to my hand, so I’m not sure if these signs are alarming or if they are what is to be expected. I’m trying to remain hopeful, but in my gut I feel like this is a bad sign. I’m not telling my parents, for it will just give them something else to worry about. Hopefully I’ll be wrong, and it will work just fine.

I had my fistula placed today. I guess I was more worried than I thought about it. It’s scary being rolled into the operating room and laying on the table. All of these people in masks, and all of this crazy equipment, it’s overwhelming. And to think that you are going to be knocked out and these people can do whatever they want to you. Anyways, the fistula was placed in my right arm. The vascular surgeon had a hard time with my veins. Apparently they aren’t up to par. They don’t even know if this will work, but they said they felt confident that it will. It has to heal for about six-eight weeks before I can even be on dialysis. Seems like an awful long time.

I am so fed up with this. I can't believe that this is my life. I'm supposed to have my fistula placed tomorrow. My family is going to be there with me. It's a same day procedure, so it's not too serious. My brother is going to be there, even though he hates being in hospitals. That means a lot to me. It really sucks going through this. I don't have diabetes, what did I do to deserve this? I don't know anyone my age who has to go through this, if they are, they probably have diabetes. This whole mess just seems so unfair.

I really feel like I have no control over what is going on. The doctor said that I have to go on dialysis while I wait for a kidney transplant. A kidney could be ready today, or never. It's all a very complicated system, and its very confusing. I just hope everything works quickly. I'm very impatient. I am not very good at waiting on things.

Today I've been setting up a date to have my fistula placed in my arm. The only surgery I've ever had was when I had my nose cauterized when I was in the third grade. I'm a little nervous, even though it will be a same day surgery. I'm trying to decide where I should have it done. My doctor practices at both Miami Valley, and Kettering hospital. I think I'm going to go with Kettering since I'm a student here. I guess I figure they will be extra nice to me when my family tells them I'm a nursing student here. I really miss talking to my parents. I miss the way it used to be. I feel like they look at me differently now. Now I'm this person they have to constantly watch over. They're afraid of what to say to me, thinking they might hurt my feelings.

Right now I'm getting ready to go to work all night. I figured if I keep myself busy doing something I like, I might be able to forget about all of this. I find it is worst when I'm not busy; it's then that my mind starts to race. Your imagination is you worst enemy. It seems to thrive off of coming up with the worst case scenarios. I just hope I'm able to care for the patients properly tonight, and I'm not too distant.

Today I did nothing but lay in bed all day. At first I thought about all of the things that I needed to do, but then I realized that none of those things matter to me anymore. I just curled up in a ball, and turned off my phone. Right now I just don't want to have to deal with anything.

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.