I sometimes wonder what my life would be like if I was born with two kidneys or if my one kidney had never failed. I know I wouldn't be the same person at all but I wonder if I would have liked the person I became without having to deal with this. I started dialysis shortly before my 25th birthday but I had known it was going to fail for a while before that. That knowledge shaped decisions that I made in my life which could be considered questionable at best sometimes. For me, knowing at anytime that my kidney could fail led me to take advantage of every single opportunity that came along sometimes for the wrong reasons. I made decisions by saying why not? I could be dead tomorrow.
I had tests done when I was 18. To see how my kidney was functioning. I thought everything was fine but my blood pressure was high and my nephrologist at that time tried to get me to go on blood pressure meds but I refused. I often wonder if I would have listened to her if my kidney would have lasted longer. Who knows. I try not to think about decisions that I made in the past because there is absolutely nothing that I can do to change them. I was on and off blood pressure meds for the next few years but I was only on them when it suited me because of side effects of them. I am not a fan of medicine which is my choice but when it comes to my health I should have listened a little bit better. I suppose I feel guilty for contributing to my failure.
I think that has been the hardest thing for me to come to grips with. The guilt that I still feel for every little thing that goes wrong. When you are in charge of your treatments everything is on you. It's the same way in-center because you choose whether to take meds or not and whether to even go in for treatment or not. I can speak for others but I feel a huge responsibility for my health. Which in my mind is valid since if I don't do dialysis I will die. This month for example has been hell. I've been really sick and more than likely the whole thing is my fault for not realizing that I hemolyzed at some point during dialysis. This is the only logical explanation that my doctors can come up with for my hemoglobin dropping for 10.7 to 6 in a matter of a week since I had absolutely no other bleeding. I suppose that it is the risk that I take because I do nocturnal dialysis. I watch during the first maybe 5 minutes of dialysis to make sure everything is okay and then I turn off the light and generally watch movies or read or hopefully sleep. Since I am the one who is in charge of everything all the bad stuff is my fault. I have always had an issue with blaming myself for things so of course I am beating myself up for this. Basically the entire month of July was a wash for me. Half the time I couldn't walk straight. But like my best friend, J, pointed out to me today a dinner all I can do is put it behind me, learn from it and move on. So this is what I shall try to do and hope August is a little bit better!
Thursday, July 26, 2012
Monday, July 16, 2012
Beginning
Let me begin with introducing myself. My name is Caroline, I'm 27 and I have been on dialysis since March 8, 2010. Ironically March 8th is world kidney day which I find quite funny. I was born with one kidney. I like to kid and say that God fell asleep on me but some people get offended at that. Oh well. One of the great things about having a chronic illness is that you really start not caring about what other people think. Anyways, back to introductions. The doctors don't know why my only kidney failed. I say that it wants to jump out of my body or it's angry at me but that isn't really accepted in the medical world. The truth would be something closer to the fact that I had a ton of kidney infections when I was a child and the scarring from that more than likely killed my kidney for good. Regardless, it's dead and so now I have been doing dialysis for almost 2.5 years. I never went in a center to do dialysis. I went straight into what they call home training. I will more than likely write a post someday about that 5 week process of training that I went through but it might take me a little while.
I really an outlet where I can post the day to day things that actually go on when you choose to do home dialysis. Even though I have only done it for 2.5 years, I have a lot of experience with different types of dialysis that you can do with NxStage which I have to admit, in my opinion, is a brilliant machine. Dialysis sucks. There is no getting around that. Sticking big needles in your arm to stay alive? Yeah, there is really nothing great about that. But I can't imagine going to a center 3 times a week. I like being in charge and structuring my treatments around my timeline.
I have known that my kidney would fail since I was a kid so I had some time to get used to the fact that I would be on dialysis. I really found out that it was going to fail in May of 2008. I was living in Egypt at the time, in Sharm El Sheikh to be exact and I was having a really hard time with infections. I ended up having 3 different kinds of infections and having to be on two different IV antibiotics. That was fun. I was out of commission for about 3 weeks. After that infection my creatinine would not stop going up. Deciding that the doctors in Sharm El Sheikh didn't really know what they were talking about, I researched the best hospitals in Egypt and took off to the one in Monsoura, which was very renowned in the middle East. I basically called them up and told them I wanted to see the director of the hospital and I explained my situation. I ended up staying for a week, free of charge while they ran a battery of tests on me. Long story short my GFR (how well your kidney works) went from 64% in to 28% in 4 years. It was not a good thing. Anyways, I ended up moving back to the USA in August of 2008 since I didn't know how long it would take my kidney to fail. People don't usually start dialysis til your kidney function is under 15% or so depending your lab work.
Once I moved back, I found a nephrologist (a specialized kidney doctor) who I loved and went on from there. I was put on blood pressure medication, got a fistula (a vein and an artery connected to make a super vein) and basically waited to for my kidney to fail. Having a good nephrologist, who you can trust and feel comfortable with is very necessary. It took me a little while to find someone I worked well with. I have issues with doctors who don't listen to me due to my extensive medical issues and past experiences. My pediatric urologist was one of the best doctors I have ever known and I had a very difficult time finding someone who I could trust as much I did him. My first nephrologist and I didn't get along at all and she was the one who passed me off to her colleague who is my current nephrologist who I happen to adore. Dr. G listens to me and has always been open with my treatment options. He's very much open to home dialysis and was able to help me get on the type of dialysis that I wanted to do. He knows my case almost as well as I do and has been able to direct me to other specialty doctors most of whom I've liked and respected as well.
When I got the news that I actually had to start dialysis I was pissed. Royally pissed. It was late February 2010 and I had an appointment with Dr. G that morning. I was ticked to begin with because I had to miss the first half morning as a teacher's assistant and then I was given the news that I had to go to training and they didn't know how long it would take. I think no matter how much time you've had to come to terms with the the whole dialysis thing, when it actually happens it's a whole different story. I got into my car and yelled and screamed and hit my steering wheel. Once I started, I was bound and determined that it would only take me 2 weeks to learn everything and I would be out and getting on with my life. How wrong I was. The whole process was 5 weeks and deserves a post by itself. As does my first time doing dialysis by myself where my needle came out and blood shot everywhere. I've had some interesting experiences. Anyways, until next time!
I really an outlet where I can post the day to day things that actually go on when you choose to do home dialysis. Even though I have only done it for 2.5 years, I have a lot of experience with different types of dialysis that you can do with NxStage which I have to admit, in my opinion, is a brilliant machine. Dialysis sucks. There is no getting around that. Sticking big needles in your arm to stay alive? Yeah, there is really nothing great about that. But I can't imagine going to a center 3 times a week. I like being in charge and structuring my treatments around my timeline.
I have known that my kidney would fail since I was a kid so I had some time to get used to the fact that I would be on dialysis. I really found out that it was going to fail in May of 2008. I was living in Egypt at the time, in Sharm El Sheikh to be exact and I was having a really hard time with infections. I ended up having 3 different kinds of infections and having to be on two different IV antibiotics. That was fun. I was out of commission for about 3 weeks. After that infection my creatinine would not stop going up. Deciding that the doctors in Sharm El Sheikh didn't really know what they were talking about, I researched the best hospitals in Egypt and took off to the one in Monsoura, which was very renowned in the middle East. I basically called them up and told them I wanted to see the director of the hospital and I explained my situation. I ended up staying for a week, free of charge while they ran a battery of tests on me. Long story short my GFR (how well your kidney works) went from 64% in to 28% in 4 years. It was not a good thing. Anyways, I ended up moving back to the USA in August of 2008 since I didn't know how long it would take my kidney to fail. People don't usually start dialysis til your kidney function is under 15% or so depending your lab work.
Once I moved back, I found a nephrologist (a specialized kidney doctor) who I loved and went on from there. I was put on blood pressure medication, got a fistula (a vein and an artery connected to make a super vein) and basically waited to for my kidney to fail. Having a good nephrologist, who you can trust and feel comfortable with is very necessary. It took me a little while to find someone I worked well with. I have issues with doctors who don't listen to me due to my extensive medical issues and past experiences. My pediatric urologist was one of the best doctors I have ever known and I had a very difficult time finding someone who I could trust as much I did him. My first nephrologist and I didn't get along at all and she was the one who passed me off to her colleague who is my current nephrologist who I happen to adore. Dr. G listens to me and has always been open with my treatment options. He's very much open to home dialysis and was able to help me get on the type of dialysis that I wanted to do. He knows my case almost as well as I do and has been able to direct me to other specialty doctors most of whom I've liked and respected as well.
When I got the news that I actually had to start dialysis I was pissed. Royally pissed. It was late February 2010 and I had an appointment with Dr. G that morning. I was ticked to begin with because I had to miss the first half morning as a teacher's assistant and then I was given the news that I had to go to training and they didn't know how long it would take. I think no matter how much time you've had to come to terms with the the whole dialysis thing, when it actually happens it's a whole different story. I got into my car and yelled and screamed and hit my steering wheel. Once I started, I was bound and determined that it would only take me 2 weeks to learn everything and I would be out and getting on with my life. How wrong I was. The whole process was 5 weeks and deserves a post by itself. As does my first time doing dialysis by myself where my needle came out and blood shot everywhere. I've had some interesting experiences. Anyways, until next time!
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