I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Restorer on September 24, 2008, 08:33:36 PM
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Hi, my name is Matt. I'm 23, living and going to college in Santa Barbara, California. I was diagnosed last March with kidney failure. They found masses in my kidneys, and attempted three percutaneous biopsies, but came up with no conclusive answers as to what was really wrong. In June, I went to UCLA for an open biopsy/partial nephrectomy. The surgeon removed the largest mass from my left kidney, and after weeks of pathology tests, they didn't have any more useful information. My kidney failure didn't improve, so my official diagnosis became ESRD from interstitial nephritis of unknown etiology.
Several months ago, it was decided that my kidney function had degraded enough that I really couldn't go on any further without dialysis. I had been doing quite a bit of my own research, and decided that I definitely wanted to do PD instead of hemo. On August 1, between summer class sessions, I had the surgery to put my catheter in. The labs I drew for that surgery, the week before, showed my creatinine at 18.5. We took it slowly and after about a week we flushed the catheter.
Over the next three weeks we tried filling and draining, but it wasn't working so well. It was somewhat painful to both drain and fill, and filling was slow. After the first attempt, it stopped draining completely. Nothing we tried made it drain, so I was scheduled for an x-ray with contrast in the catheter. The x-ray showed that the catheter was entangled in omentum, and might've been blocked with fibrin. I was set up for another surgery, laparoscopic, to untangle the catheter. During the surgery, they decided that it would be easier to just replace the catheter entirely, so that's what they did, with the new catheter going through the same exit site. That surgery was one week ago.
They kept me at the hospital overnight after my surgery, but I won't go into my rant about hospital stays. Yesterday, I tried out the new catheter at the dialysis clinic. It seemed to work. I had to control the flow tightly to prevent pain (probably because it's so soon after my surgery), but I managed to repeatedly fill and drain small amounts.
Today my lab results came back, and I got a call early in the morning from the PD nurse. My creatinine on Monday was at 21. I had been feeling nauseous the last few days, so she wanted to fix that ASAP. She trusted me enough to have me do an exchange on my own at home. When I visited the clinic later today, I did another exchange there, and took the training final, and got signed off on everything else I needed to certify me to be an independent CAPD patient.
So now I'm officially a CAPD patient, as of today. I'll be spacing out my exchanges however they fit the rest of tonight, and tomorrow and Friday I'll be doing four spaced evenly all day. I'm supposed to get on a cycler very soon, and then use the cycler at night as well as do two exchanges during the day - so many because my exchanges are so small, 500-700 ml. Eventually they'll get bigger, and my creatinine will go down, and I'll transition to just using the cycler at night.
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Welcome Restorer, good to have you aboard.
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Welcome Restorer. I am also on CCPD and started with CAPD. Please let me know if you have any questions or concerns.
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:welcomesign; Matt. I'm sorry about your ESRD, but really happy that you have found us. We are a great group with all kinds of information and support. Hope you stick around and we hear more from you. :cuddle;
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:welcomesign; to IHD Matt. You've come to the right site for info and support about ESRD and all it's complications. I look forward to hearing more from you.
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Wow! You sure took the Advanced Placement Kidney Tech 101 course! My sympathies for sure!
I enjoyed reading your post. "A+"
Welcome to IHD, Matt. I am sorry for the circumstances that bring you here but glad you're here nontheless.
-Devon
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Welcome Matt-
I hope you feel better soon, so that you can get back to your normal activities. I would love to hear how your progress with PD, as I will be starting some form of dialysis in the future.
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Welcome to our community, Matt! I am so glad that you found us. I am sorry that you had to face such a challenge at such a young age. I was 55 when my kidneys failed (three years ago) I don't pretend to be able to understand what it is like at your age. But there are a few here in your age group. My caring thoughts are with you all the way. As I quoted from an introduction, this is 'a place to vent, cry, laugh, and get informed'. Please make use of it. we consider ourselves a real family :grouphug; Looking forward to hearing from you as you let us know how you are doing.
Bajanne, Moderator
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:welcomesign; Matt!
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Hi Matt. I hate that at 23 you are dealing with all of this. You seem to have a good grip on the situation and have taken control of your situation. Many here do PD and are willing to share their experiences. Members are quick to answer questions, so please use this forum as another learning tool. We all take care of each other and are a great support system. I look forward to hearing more about your experience. We are so glad you found this site and joined us. :grouphug;
Paris,moderator
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Welcome Matt, thanks for joining IHD. We look forward to your posts.
Boxman, Moderator
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:welcomesign;
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Welcome to IHD Restorer,
You sure have been walking a tightrope haven't you. Sorry you had to go through the surgery twice but glad things are working out for you. You have joined the fastest growing message board of it's kind here and I hope you learn a great deal from us. Feel free to browse and ask questions whenever you need to. We are here for you 24/7, 365.
Sluff/Admin
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:welcomesign; to the IHD family. You've been through a lot.
Are you going to be able to stay in school? Are you at UCSB? That's a great school and a great place to go to school.
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:welcomesign;
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I am going to UCSB. When my health started declining a few years ago, I started doing worse in classes. All said, I ended up screwing up my GPA over a couple of quarters, and had to take a couple years off. Since last year I've been taking classes at various community colleges, and more recently, summer classes at UCSB, in order to earn my reinstatement. I finally got readmitted for this fall quarter, and now I'm starting (again) on my junior year of my Computer Science degree. I feel like now that I'm on dialysis and getting regular EPO, I'll be able to do well enough to get my GPA back up and graduate.
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Good luck, welcome, sorry about the kidneys.
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I am going to UCSB. When my health started declining a few years ago, I started doing worse in classes. All said, I ended up screwing up my GPA over a couple of quarters, and had to take a couple years off. Since last year I've been taking classes at various community colleges, and more recently, summer classes at UCSB, in order to earn my reinstatement. I finally got readmitted for this fall quarter, and now I'm starting (again) on my junior year of my Computer Science degree. I feel like now that I'm on dialysis and getting regular EPO, I'll be able to do well enough to get my GPA back up and graduate.
Great, I'm so happy to hear that you are able to continue your program. Good luck with the semester. :cheer:
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:welcomesign; matt
sounds like you 've got handle on it all
good luck with all the school stuff :thumbup;
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I am so glad that you are persevering with your studies. My caring thoughts are with you. :cuddle;