Hi I’m new

[Shon1021]

Hello I’m new to this forum I’m 16 so I’m young😂 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 😂 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.

[MooseMom]

Hello, Shon.  I am so sorry to read about all of your travails at such a young age.  You've had a good, long run with your transplanted kidney, and I am hoping that you get a new one very soon so that you can get off PD.  It sounds like you've had a lot of pain with the cycler; are you in any pain with manual/CAPD?

I'm hoping that you will get a new kidney soon since you appear to have been on the waitlist for quite some time now.

All in all, how are you feeling?  Is dialysis making a noticeable difference in how you are feeling?

I know you've had a transplant for a long time, so you are a pro, but since the surgery was so long ago, do you have any questions we can help you with about transplant?

Keep us posted, OK?  And welcome to IHD!  Thanks so much for joining!

[Paul]

 

Hello Shon, welcome to the site.

You may have started off with "I’m young😂", but you have been through more than some people go through in an entire life. My thoughts are with you, and my best wishes go to you.

As MooseMom said, if you have any questions don't hesitate to ask. We are also here if you need to vent, need some sympathy, need a hug, etc.. Post whenever you like.

[Shon1021]

Thank you @paul abd @moosesmom or @moosemom I don’t have pain on CAPD until I get to the very end of my drain and have nothing left. I feel fine on dialysis which is weird because everyone says they have more energy but because my energy levels were going down at a slow rate along with my kidney so it just became the new norm. They say I’ll have more energy after my kidney transplant and also I forgot to add this the dialysis has caused me not to be able to go back to school for the rest of the year but I’m supposed to have a home and hospital nurse. We did talk about tidal but we couldn’t get past the I-Drain and also I was empty so maybe that was a problem I don’t know.

[iolaire]

Welcome to the group.  I'm glad you are joining us for information and hopefully to receive some moral support from people who are going through the experiences dialysis wise.  There truly is a wealth of experience here and you should get some good feedback on your drain pain question - we have a few active threads on the topic...

I had to laugh at this experience, luckily it should not be something you do this time around!

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.

Occasionally we have members your age looking to talk with others in the same age range, if you feel like connecting is one of the more recent posts and AaishaDar is still active on the forum:
https://ihatedialysis.com/forum/index.php?topic=34035.0

[cassandra]

Welcome to the site Shon


   


Take care, Cas

[kickingandscreaming]

Welcome, Shon.  Sorry to hear about your drain pain.  In your other thread I mentioned trying Tidal on the cycler.  Now I read that you've already had that conversation.  I could see a Tidal cycler program that leaves a small amount of fluid in you after each dwell/drain. Then you shouldn't feel sucked dry.  For the last fill/dwell, you could do it on the cycler and then disconnect and drain manually into a drain bag.  Have you tried that?

[LorinnPKD]

Shon, welcome!

[Charlie B53]

Hi Shon!

Welcome to IHD.

You have had serious trails for such a young person. I have to admire your courage.

I suspect the placement of your cath leaves a lot to be desired as the pain you describe is nothing like any that I have had.  You need to have a long talk with your Surgeon, perhaps an X-ray to confirm the positioning.  It may be that the Surgeon will have to again get in there and move it a little.  Maybe even stitch it, anchor the new position so as not to touch or rub again those areas that are causing your pains.

My Dr and PD Nurse explained to me that when I had reoccuring drain pain that I could repositon my cath slightly by doing a manual fill.  Squeezing the bag very hard raising the fill pressure and making the end of the cath sort of 'whip', move much like a garden hose laying on the ground.  With the higher pressure and flow the hose can move like a snake.  Hopefully into a non-painful spot.

Talk with your PD Nurse and Dr, see what they think.

Ideally another kidney will become available soon.

Take Care,

Charlie B53