Ever had one of those moments where you just feel deep down like something is terribly wrong but you just can't put a finger on it?
Well, that happened to me when I was 13. I had no symptoms, didn't feel bad or anything but I just had this feeling in my gut that something wasn't right. Told my mom that I thought I should get checked out at the doctors or something and she thought I was being silly. Fair enough, like I said I had no symptoms to speak of so its not like I had a good reason to waste time on an appointment. After getting shut down by my mom I put idea behind me and told myself I was overreacting.
Fast forward 4 years to 2007 I was 17 and it was August and the start of my senior year of high school. I was with my mom at an aunt's house on a Sunday afternoon and all the adults were getting their blood pressure checked since hypertension runs in the family. Out of the blue I decided to get my blood pressure checked as well. Everyone laughed and said nothing was wrong with me but they went ahead and checked it anyway. I don't remember the exact numbers but it was 140 something over 90 something. Everyone thought it was a mistake and so they checked the pressure again........still 140 something / 90 something. At this point my mom is really concerned so after leaving my aunt's house we stop at a Walgreens to use the blood pressure machine just to be absolutely sure. Yep, still 140 something/90 something.
So we setup a doctor appointment and I get a full workup. Eventually they focus on the kidneys and refer me to a nephrologist who runs even more tests. The nephrologist tells me that I have end stage kidney disease and that I need to start preparing for dialysis. When I asked what caused the kidney failure he didn't have an answer. No diabetes, no PKD, the kidneys just failed and no one knew why.
So now I suddenly had a huge decision, PD or HD? I went with PD for 2 reasons: 1) I was told it would be easier on my body and 2) I wanted to minimize disruptions to school as much as possible.
I was ranked #1 in my class at the time and wasn't about to let all that work go down the drain. So I get on the transplant list and in October I get my PD catheter and my parents started their PD training. By the end of October I had experienced what has thus far been the second worst experience in my life.
PD SUCKS!!!
God I hated PD. They said it would be painless and that I would be able to sleep while it was running........NOPE! While the fluid was going in and during the dwell phase everything was fine but once the machine started draining the fluid it felt like I was being stabbed with knife. Some adjustments were made but it was still somewhat uncomfortable. As much as I hated it I hate hospitals even more so I forced myself to keep going. I did PD for 3 months when everything changed.
In January 2008 we got a call in middle of the night from Tulane saying they had a kidney available and that it was a good match for me. We make the trip to Tulane get the blood work started and wait. Finally they tell us everything is good to go and they get ready to prep me for surgery. The spring semester had just started so my mom has to tell principal/teachers.(I'm a very private person so I don't tell anyone my issues unless I absolutely have to. No one at school even knew I was on dialysis.) The surgery went very well and I went home after 4 days. While recovering at home my mom brings me work from school so that I wont be so swamped when I get back. After 5 weeks of being home bound I finally get back to a normal life, finish HS as valedictorian(suck it Dereka
), and prepare for college.
So it seems like everything is fine right? Wrong. While I was perfectly fine physically it was a completely different story mentally. You see, I love knowledge. If there is something I don't understand I will research it until I do understand. So the fact that my native kidneys had failed without getting a definitive cause REALLY bothered me. I started thinking about nightmare scenarios. What if whatever caused my kidneys to fail makes this transplant fail? What if my other organs start failing for no reason at all?(Looking back I was overreacting and talking to someone about it probably would have helped me a lot....being private has its downsides
) Needless to say, I was really distracted from school and then the problems started. It seemed like every semester there was something wrong. First semester was CMV(donor kidney had tested positive for it), second semester was CMV again. Third semester was a mild rejection episode. Eventually I dropped out of college after about a year and a half due to bad grades and went back home(to this day this is the biggest regret of my life). I didn't know this at the time but it was the start of a serious downward spiral into depression.
From 2009 to 2010 I was pretty much just going though the motions without any direction. I was depressed but refused to admit it so it just got worse and worse until I couldn't take it anymore and decided to get help. Talked to a psychologist for a couple months and started doing better and trying to get back into school. Then in December of 2011 I had another rejection episode. This time the kidney could not be saved and it was back to dialysis. After having a bad experience with PD I decided to try HD which was a mistake......
HD SUCKS EVEN MORE!!!!
Hello worst experience of my life how are you doing? Yay for inflexible schedule. Yay for nausea. Yay for exhaustion. Yay for needle infiltration.
So now I was doing HD MWF at 21 years old while trying to get back on the transplant list. Around this time the failed transplant starts giving me problems(my immune system wasn't satisfied with just killing the kidney it had to torture the poor thing) so I had to get it removed before I could get back on the list.
I am now back on the transplant list and I am currently looking into trying NxStage. I want to travel. I want to finish school. I want to actually be productive for once in my life.
I Hate Dialysis Message Board
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