Hello, I am 27 years old. I was diagnosed with CKD (Chronic Kidney Disease) on April 2016. My condition eventually got worse a few days after I was diagnosed with CKD so now I have ESRD (End Stage Renal Disease) and I was put on emergency hemodialysis when I was in the hospital in June 2016. While I was first in the hospital I was suppose to be scheduled for a surgery to get my catheter for peritoneal dialysis but when I was admitted my blood pressure was to high, the doctors had to do emergency hemodialysis to stabilize it. The catheter for hemodialysis went into my groin, the most painful thing ever to sit and urinate. Once my blood pressure was stabilize they were able to do the surgery for my peritoneal dialysis. Unfortunately they could not remove the catheter on my groin because it became infected. They had to do some testing to see what the cause of the infection was.
My first few days of doing peritoneal were the most difficult thing ever. I do my peritoneal while I sleep. My first treatment was for 10hours (in the night). The first drain hurt like hell ! After that everything else just hurt. I was up crying during the night when the drains and fills happened. The only time I was at ease was during the dwelling. The pain stopped and my body got use to the draining, filling, and dwelling. The pain happened every now and then but so far I am able to sleep through the night.
I was put on the kidney transplant list in December 2016 and I am currently still waiting for a donor.
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PUREkatniss
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Hello and Welcome! Yours is an amazing story. I've done a lot of reading and I find yours to be truly compelling. This is a great site for help and support and I'm certain you can get whatever you are looking for here.
I have a lot of questions for you but I'll hold off a bit on asking until you get used to this place and feel comfortable.
Again, welcome and best of luck on your adjustment to PD.
Welcome! Yours indeed is an amazing story! So glad that you are more adjusted and mostly pain freee now. Stay positive and eat well and excercise as much as you can/ should. Praying for you. And hoping that you get a donor soon. Stay strong!
Oh my, that's sound awful. People have no idea what CKD folks have to go through. I'm not on dialysis (hope to avoid it). It really scared me at first, but, then again, the hospital I was using at the time didn't do a very good job of explaining it. I hate that hospital staff just think of if as a "matter of fact" issue when it's a really, really big deal! I sincerely hope you get a kidney donor soon. I've been on the list for about 9 months now. My wife is going through the testing to donate to me, but, I'm hoping a deceased kidney becomes available before that happens. I was born with only one kidney and it's at 18%. Thank you for sharing your story! I look forward to hearing more about your progress!
Thank you all for your kind word and words of encouragement. I will be sure to keep this page updated with my condition and status of getting a kidney transplant.
I am not far behind you. My GFR is 11. Is the night dialysis working better now? That is what I want to do, but I don't want to do a transplant unless dialysis doesn't work. Do you feel any better than you did before starting dialysis, or is it just keeping you going? I am putting it off as long as I can.
Hi jobeth ! I personally like night dialysis better since I do it while I sleep. I get to do things I would normally do such as work, go out with family and friends during the day and at night. Depending on how long your treatment is at night and what time you need to wake up the next day (for example work or school), you should plan out and manage your time of when you're going to start your treatment at night. .
I feel like night dialysis keeps me going and gives me more energy and at times I feel so sluggish and I do still get some side effects of having kidney disease such as edema on feet or face, fatigue, nausea, and dizziness. But that is always normal because you do have kidney disease and these are always side effects.
I'm not going to lie, once you start (peritoneal/night) dialysis the first new treatments will hurt like hell. But after that your body will get use to it and it will be a breeze sleeping at night.
Peritoneal/night dialysis consist of what's called a drain, fill, and dwell. Once you start the treatment, you start with a drain which basically drains all the fluid inside you body (the fluid you are unable to urinate out). The drain is when the treatment fills your stomach with the solution. (When I do treatment, I can feel the first fill. After that you don't really feel it). The dwell is when the solution stays in your stomach. After the dwell, the cycle starts all over again with the drain, fill, then dwell. This happens every hour depending on how long your treatment goes on for.
jobeth Before I started dialysis I had no symptoms. No swelling feet/face, nausea, dizziness, or fatigue. It wasn't until after I was diagnosed and started dialysis I started to experience these symptoms. I read that it is normal to experience the side effects after being diagnosed/starting dialysis.
My GFR before I started dialysis was <15, I think it was 9.
Do you know what caused your CKD? Now that you are on Dialysis, are you able to continue to function as you did before? I am asking a lot of questions because I am facing a lot of unknowns. I have polycystic kidney disease and have been slowly declining for the last 8 years. Before that I only declined slightly every few years. I have been under 20 for the last couple of years. I also have psudotumor cerebri which is another complication of the polycystic disease. between the two, I found that I could not continue to teach school effectively and have been on disability with the teachers retirement. I could end up going off of it next March and might have to find something I can do and am trying to figure out how I might feel if I went on dialysis.
@jobeth: Sorry for the late reply as I have been busy during the weekend. From my understanding CKD is caused if you are diabetic & have high blood pressure. Luckily I only had high blood pressure, but I guess I've had it for a while before getting it treated which eventually lead to my CKD.
And before being diagnosed I experienced no symptoms what so ever! It wasn't until after I got diagnosed that I experience the symptoms of nausea, dizziness, and fatigue. (I've read that this can happen with CKD patients that they feel not symptoms before being diagnosed and experiencing symptoms after being diagnosed and this is normal). A year and some months later I still experience those symptoms along with having little to no appetite and having a hard time keeping my food down / vomiting on random occasions.
I do have more good than bad days. I try to get during the bad days so it doesn't affect my everyday life. Luckily my job has been very cooperative and understanding of my condition so I get to work from home (I work as a medical processor). I not going to lie, maybe you might have some hard days to get through if you are a teacher, but you shouldn't let doing what you love prevent you from teaching.
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