Hi! My name's Meghan. I found out I had stage 4 CKD 2ish years ago after going to the Er with a bad case of the flu and dehydration.. The crazy thing is I've never experienced Any symptoms except for occasional kidney pain.. but nothing bad? I guess my kidneys have gotten to the point of needing dialysis and I had surgery 4ish weeks ago to have a PD catheter placed in my abdomen... I suppose im quite new to the kidney disease world and am quite scared to start dialysis, im scared I won't be able to get a job or do activities.. or even have time for school.. Or that it will be uncomfortable.. i've done flushes for the past few weeks and those are well, difficult. I guess just getting used to it is a struggle aha.. does anyone (parents, patients, etc) have experience with PD? Any tips? Advice? Thanks guys! 
15 and Stage 4 CKD: Hi! My name's... - Parents of Childr...
15 and Stage 4 CKD
Hi, Meghan. My daughter was diagnosed with a rare autoimmune disease called Goodpasture's Syndrome in February. By the time they figured out what was going on she was already at stage 5 & had to be immediately hospitalized & put on CVVH, which is a continuous dialysis. After 2 weeks of that they put in a hemo chest catheter & she went to Monday, Wednesday, Friday hemo dialysis, 3 hours per session. She spent 22 days in the hospital before they thought she was well enough to leave. Hemo was extremely rough on her body. She did not feel well at all doing it, so they put in the PD catheter in May & just in time as a careless tech had caused a clot in her chest cath & she would have had to get surgery to have it replaced if she hadn't have been in the process of switching over to PD. PD has been so much gentler on her body. They just did her 90 day review & she is handling it well though it has been a roller coaster ride with her blood pressure sometimes & trying to find the right prescription. But we much prefer PD because of how easier & seemingly healthier it is for her. She has to be connected for 10 hours a night so remembering timing for school & morning appointments is important but not bad. She was just approved & put on the transplant list but she won't actually be eligible for a transplant until January because the antibodies that destroyed her kidneys have to be gone for 6 months or else they would just attack the new kidney... She's 12, by the way. Anyway, having gone through both Hemo & PD with her, I highly recommend PD.
Hi. Reading your daughter’s story is like almost reading my daughter’s story. She’s also 12 with a rare auto immune condition and she’s been on PD dialysis since July. We just had the first appointment for transplant review. The end of the month we go back to speak to surgeon. Hopefully her antibodies are not active.
Good luck to your daughter🙏🏼
Wow! That is very similar. What autoimmune disease does your daughter have? My daughter was positive for Anti-GBM & Anti-MPO. They got the GBM down to "normal" in May, but the MPO didn't come down until July. So that's when they started her 6 month clock until transplant. She had her meeting with the Transplant Committee last month & met with the entire Transplant team in one day. It was intense.
Hope things go well for your daughter.
She’s got P-ANCA Vasculitis.
Yes, the meeting was intense! ... information overload.
I hope her antibodies are down so that she could also be on the list 🙏🏼
Are you in the central Fl area?
Information overload indeed! And I could be mistaken but I am almost positive that P-ANCA Vasculitis & Goodpastures Syndrome are the same thing. The only difference being the name change. From what I understand they are trying to get away from calling the diseases by the name of the person who discovered them. When she was first diagnosed they thought for a second it could be Wegener's Disease but said that they now refer to that as Granulomatosis because Wegener was a Nazi & to keep PC they were changing all the disease names to something more clinical. So, no wonder our stories sound so similar & sounds like they have the same thing!!
We are in North Georgia.
They could have the same thing🤷🏼♀️
Too bad we live so far, would have been nice the girls to have met.
Agreed! She gets so frustrated with the kids at school & their "petty complaints". She was already pretty mature before all of this but this defintiely made her grow up fast. How has your daughter been handling the treatment? My daughter ended up being allergic to the Rituximab (thankfully there were only 2 infusions) & the Cytoxan infusions made all of her hair fall out. I'm so glad those are over now & her hair is starting to grow back. I shaved my head with her in solidarity so now I get to let mine grow back too, LOL.
Hi, I'm wondering between the pros and cons of Hemo and PD.
What would you say are pros and cons of both?
For PD, is there a risk of the lining of the body breaking and liquids leaking out into the body?
Hi Meghan! I took care of my daughter who did PD for over five years (before she had a successful kidney transplant). We did it overnight so thankfully her days were pretty open. And we even traveled with her PD machine! (We went to Disney for her Make-A-Wish trip). Unfortunately she’s mostly nonverbal so she couldn’t really tell me what it felt like but she never seemed uncomfortable from the process. And we spent lots of family time watching movies or reading stories during her treatments so it wasn’t like we had to stop everything for her treatments (but you do have to plan ahead!).
Hang in there! We found it really helpful to connect with other families at our hospital who also did PD (the PD Nurse was really great at connecting us). And sometimes it can seem never ending but focus on one day at a time.
Take care,
Jeni
Hi Meghan, I'm so sorry you are experiencing any of this! My daughter did PD and HD when she was a baby and then had a transplant 12 years ago. She is doing great now and doesn't remember any of it otherwise I would have her talk to you about it all.
I'm wondering if you can ask your hospital if there are other teens your age with whom you can talk? It might be helpful for you to connect with others who have experience with the same things you are going through? Or maybe there are other parents in this group with kids your age with whom you can talk?
Hang in there! I'm sure you will figure out how to handle school, work and anything else you want to do. Good luck!
Hi Meghan,
As a mom, I’m sorry you have to go through this. I have a 12 year old girl who unexpectedly went from stage one to end stage in months. PD dialysis is better than the Hemo. In the begging is uncomfortable but after a month and a half, she got used to it. She gets nauseous here and there, other than that she’s able to go to school. Should you have any other questions or concerns, know you’re not alone and you can always message me.
Wish you the best🙏🏼
Greetings! How is your daughter feeling now?
Hi Meghan,
My son (13) has been on PD since April and like others here does his overnight for 10 hrs. He sometimes feels a little discomfort here and there with fills and drains while awake but mostly if doing something else like playing lego or video games he is distracted enough that its not a bother. He sleeps through the rest so deeply he doesnt wake up to alarms from kinks in the line which luckily doesn't happen much any more since we use the blue coil protector that toddlers use to prevent kinking. If you are a deep sleeper I highly recommend the blue coil. PD is great that it doesn't interrupt his daily activities much at all. The worst for him is needing to stop or ease up on certain activities (swimming and trampoline)so not to risk infection or hernia ect.
It all seemed way more overwhelming before we were actually in it. I just keep focusing on the positives and that we are lucky to have these options to do at home. Take it day by day and know you are not alone.
Take care,
Amy
Hello Meghan,
This new life will be a struggle, but a struggle very manageable. Dehydration should of not killed both kidneys, but I suppose it's possible. What caused the Dehydration problem? Since they must of talked you into a PD catheter possibly this is only temporary Dialysis? Generally they don't start you on Dialysis, and just start you on PD. Though many Doctors do different things, in different places, I think I would of gotten a second opinion to start. But if you really do have failing kidneys with no chance of them recovering, and you're fine with the treatment option you decided, or they decided? (You have rights and options remember!) Then the number one important factor of PD treatment is [PREVENTING INFECTION]. This is also the number one problem people have with this treatment option. Keep everything very clean, and be meticulous about your treatments if you are doing them alone or with help. Personally I would never choose this option of treatment, just because I like to swim, and swimming isn't allowed (or if you do it anyway) there is a high risk of infection. Some doctors also say no showers, unless you have special covering. You do however have the treatment option that fits a busy lifestyle of work, school and activities. It does help with that a great deal, because you don't have to go to a center, and you don't have to worry about more schedules and times taken away from your life, you can do it when you sleep! Your diet restriction will mostly be much easier to also maintain, because you're probably doing that every day? or several times a week? Whatever the case, remember you have options, and those options are there to fit your lifestyle! Whatever works best for you, you should end up doing.
Being healthy and active still, is all up to you! If this is your only health problem, then you can certainly be as active and healthy as anyone! You just have to manage your diet, and blood labs, and you have full control of that. As far as all these different machine choices we have to keep us alive, those are working well and doing what they are supposed too, and the technology only improves all the time! The rest is all done by how well you live your life, mentally and physically!
Thank you! And yes, I went to the hospital with the flu which caused the dehydration 2ish years ago. It was then they found the damage but at that time didn’t know what it was from. I saw a couple different Nephrologists after that in the timespan of the last few years.. none of them could find the cause of the damage, and their logic made no sense to me. It was only recently I found my current Nephrologist, who finally (which is crazy) decided to order a biopsy and the correct tests! (Pervious nephrologists just wanted to jump to genetic testing, which from a diagnostic point of view is expensive and shouldn’t be the first “line of action”) That biopsy showed my kidneys had significant scarring/damage. My doctors assume (and this is all that really makes sense to me) I was born this way, something happened at my birth that caused traumatic injury (which I know I had a very traumatic birth and almost died) But beyond that the specifics are hard to know. Anyways, It was at that point my Nephrologist decided I needed dialysis, my levels were always really crazy and toxins were building up in my body, doing dialysis will take some of that work off my kidneys. starting dialysis I must admit I don’t feel any different, that being said, I’ve never felt sick or had a single symptom so 🤔 I will continue to try my best though with continuing a healthy lifestyle, Thank you for the kind message! I needed to hear that.
Hi Meghan - I wanted to know how you were doing - are yoh still on dialysis ? Or have you had a transplant ?
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