Hello I’m new to this forum


#1

Hello I’m new to this forum I’m 16 so I’m young​:joy: and let me tell you about my medical history. So I had ARPKD before I was born my mom found out because when she went for an ultrasound they couldn’t find my kidneys then they were srivlled up like raisins so they never formed. I was born 3 months early on October 21, 2001 and was put in the NICU. I was transported to children’s hospital in DC for help and when I was only 8 months old I started peritoneal dialysis. My mom did my dialysis everyday for 10 and a half hours everyday except for the days I was sick and in the hospital. I also went on hemodialysis when I had fungal peritonitis I was either 2 or 3 it happened because I accidentally bit a hole in my catheter. I was on hemodialysis for only 2 months and luckily I was able to go back on peritoneal dialysis. Which is unusual. I also had a hernia when I was little it required surgery to repair it and that was when I was 3. So when I was 4 my life changed on January 18, 2006 at 6:00 A.M. on a rainy Wednesday morning the transplant team called saying they had a kidney for me but my mom was skeptical because this was the 3rd call we got she even said “I’m not getting ready to go unless I know for sure he’s getting this one” and the lady said he needs to be here in 1 hour. So we got there but not in one hour due to traffic on the parkway. I don’t remember the surgery but I do know that I have a 17 year old’s kidney I got it because sadly he commited sucide by stabbing himself in the chest. After my transplant my life became normal only having take my pills everyday to go to appointments every 3 months monthly labs along with other normal doctor appointments my kidney only rejected one in 2009 right before Christmas but luckily I was able to get out of the hospital before Christmas and a big blizzard. So my doctor knew my kidney was rejecting but it was a slow chronic rejection so on January 18, 2013 5 years after my transplant I was put back on the waiting list but life was still easy. Fast forward to 2017 and my kidney function was not good only working in the 30s and 20s but still doing fine my doctor said call only if they have a perfect match but that still hasn’t came. So fast forward to March of 2018 and this is when my life began to drastically change I was getting sick sorta often and kept getting labs done and my creatine kept getting higher and higher so on April 2nd we had a meeting with my nephrologist to discuss dialysis the choices and things he said that it wouldn’t happen really soon but on that Friday he called and said my surgery to have the catheter placed is scheduled for Monday the 8th. So surgery went fine I only have a dot scar thanks to laparoscopic surgery and rested for 2 weeks and this is where the story turns into a pain because the first time we tried the cycler I had unbearable pain in my groin and rectum area and long story short the cycler hurts too much for me and I have to do manual or CAPD dialysis 4 times a day which isn’t fun dialysis isn’t fun at all. So now I’m waiting on a call and trying to do all the research I can to wonder when I can expect my kidney to come hopefully one comes really soon but that’s all my medical history or at least all I can think of right now sorry this is so long :joy: but I’ve had a lot happen to me in my 16 years on this earth and if you did thank you for reading all the way to the end and I would greatly appreciate it if you replied or something under this thank you


#2

You are a fighter, BasketballBaseball21! Look at all you have overcome already. I’m sure that you have days that are really difficult and days that are better, and hope you have a lot more of the better days to come. So, a couple of thoughts. “Drain pain” on a PD cycler is a real concern. Sometimes it can happen because the catheter is not in the right place, and it sucks up against the walls of your abdomen. A machine mode called “Tidal” can often help, because it “floats” the catheter by leaving a bit of fluid in. Moving the cycler up or down relative to your head (using a higher or a lower table, for example) makes a big difference for some people. So, in the really short run, you might want to think about giving cycler PD another chance. In the slightly longer run, 1). You should have a really good chance of getting another transplant quickly, since you are so young, and you did so well with the first one, and 2). If PD is no longer as good of a fit for your life as you’d hoped, there are other options. You can see which one fits YOUR life and goals the best with our matching tool: http://www.mydialysischoice.org. Finally, if you are on FB, I hope you will think about joining our Home Dialysis Central discussion group. It’s closed, so no one who isn’t a member can see the posts, and we have almost 3,900 other folks who also do PD or some type of home HD, and you can ask anything. :slight_smile:


#3

Oops, I forgot to give you the link for the Facebook group! It’s https://www.facebook.com/groups/HomeDialysisCentral/


#4

I posted a video on another thread you wrote that discusses drain pain. You might want to check it out and see if it gives you ideas of questions to ask your doctor and home training nurse. http://www.homebybaxter.com/how/home-therapies-institute/drain_pain.html


#5

@Beth_Witten_MSW_ACSW I’ve watched that video before :joy: I only get drain pain in CAPD or manual when I’m completely drained and it starts hitting my nerves so I guess I sorta do my own tidal because after I drain out what I put in my mom is usually there but if she’s not I look at the drain bag and when it starts to just dribble in I close the roller clamp because I know that it’s basically drained and soon I’ll start to feel pain.


#6

Is there any possibility that you’re constipated? Do you have a straight or curled PD catheter. Straight ones sometimes are long enough that they touch tissues low in the peritoneum near the rectum when fluid is drained. Sometimes they can reposition the catheter or shorten it.


#7

@Beth_Witten_MSW_ACSW I was but right now no I’m sure you know the poop chart mine are 5s and 6s and I have a curled catheter I don’t know where exactly the catheter is placed I think it’s to low and want it to be repositioned but everyone else says it’s fine


#8

You’re a wounded warrior but you’re strong enough to tell your story so give yourself credit for the long haul.,.and that is what this kidney stuff is…a long haul. Be strong and keep on fighting.


#9

You are a very strong and courageous young man… I bet with all you endure, you are definitely gonna be something great! I’m a PD patient for over a year… it can be tough sometimes but it’s what we have to do., stay strong my dude, you are not alone.