I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Jerlic on May 24, 2013, 05:21:17 AM
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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 :yahoo;), 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. :P
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Welcome!
Good luck!
Since you love learning there are lots of online opportunities anymore. Many of them free. If you have any questions re. College/etc. I'd be happy to tell you what I can. Just ask. (Same goes for anyone - may not know the answer to any particular question, but might be able to provide a nudge in the right direction.)
Non-trads (any student not following the usual path) are often the best.
cheers,
skg
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Bless your everloven heart jerlic... (and yours too skg for offering help :) ) What a whole bunch of crap to have already gone through... I wish you better and hope that your digging and learning will bring you some answers and comfort just in the learning. Read our NxStage section here. Lots of us do it and i think for someone with your energies and all, this will be a breeze!! It's a great modality and sounds like it was made just for you :) Give it some of your time to learn about it and see... Sending :pray; that you'll get some answers as to 'why' and so it may help ya keep that next kidney forever. :grouphug;
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:welcomesign; Jerlic
You certainly have had a few rough years. I do PD using a cycler and initially had the same problem of painful drains and drain alarms waking me up through the night. I changed to 80% Tidal therapy and that eliminated the drain problems. I haven't done HD but have read hear that many, but not all, doing HD prefer the NxStage at home.
"I want to travel. I want to finish school. I want to actually be productive for once in my life." You can and will!
By the way, your written description of what has happened with your kidney is well written! That shows you are and will be productive!
papacat
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:welcomesign; Jerlic! What a time you have had in your young life. So sorry you have had to deal with so much. You have come to the right place for support and advice! The people here have helped me so much. I am 44 and struggle with this, so I can't imagine how hard it would be for young people. I do NxStage home hemo, and feel pretty good most of the time. I can travel, make my own schedule and like being in control of my treatment. The fluid and dietary restrictions are less. I have not had a day where I was so wiped out I had to sleep it off. I think you should definitely look into this modality. The best part is that I have no pain from the needles since I started self-cannulating. I know it sounds crazy, but that has been my experience.
There are some very inspirational people on IHD who have gone to school, worked demanding jobs, raised families and led as normal a life as possible. Their stories always leave me in awe of their determination and drive. Don't be afraid to seek treatment for depression. Many of us on D have this issue. I take Zoloft. Even hough it's a small dose, it helps me. This site is also wonderfully therapeutic. You can vent, ask questions and most of all, learn that you are not alone.
You can do anything you put your mind to! Best of luck to you!
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:welcomesign; Jerlic!
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Welcome Jerlic, your story could be my story, I just can't write as well. Stop worrying about the cause of your illness. Most causes are unknown ( my opinion only perhaps) After 17 yrs D (5 yrs PD, 12 Hd), I'm now on Nxstage, and I can only strongly advise you to seriously consider that modality.
Lots of luck, Cas
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Welcome! ;D
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:welcomesign; Jerlic!
I can relate to the depression! I used to go to D and just sit and cry for the whole time. I just couldn't wrap my head around why this had happened!
My cause of kidney failure has never been "officially" determined but I am positive it was caused by being on Bextra when it was pulled for causing heart and kidney problems!
I now do Home Hemo with NxStage, I LOVE it! I don't think I would ever want to go back in-center!
Best of luck to you!
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Hi Jerlic!
Sorry you had all this hit you at such a young age. I hope you're able to try nxstage, since it's seems to be working so well for so many people.
Also, I hope you're able to resume your college education eventually, because you sound like a person who enjoys intellectual challenges.
And thank goodness for those drug store blood presure monitors! They've probably saved a few lives...