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!