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[Bubbasmom]

My son started PD training the day before his 25th birthday. I look at all the boxes and it's overwhelming. They are so working on adjusting his prescription because he failed his first kt/v test. I'm trying to stay positive with PD, but he's still in pain after each drain, so he doesn't sleep well. I just want him to feel some normalcy if that's even possible.

[SN23]

My very best for your son. My young son had to do PD for a few months too before he got his transplant in 2021.

Was very hard initially for him and for us to accept and adjust. . He was also given mild anti seizures as his body was not adjusting to it and he had an episode of seizure ( I mention this as a precaution and not to scare you🙏) But gradually things settled down and he was able to work and live comfortably.

What also helped was a switchover to a largely vegetarian diet that followed his labs. We are so grateful to the natural Kidney journey- a Facebook group for all the guidance in this regard. Of course every case is different.

With the transplant his life has completely changed and he is back to leading a normal life ( and need less to say does not take any anti seizure medication). Of course he is careful about his diet and exercises and walks regularly.

Hope your son feels and gets better and gets on the transplant list or finds a living donor soon. My prayers and best wishes🙏

[Bubbasmom in reply to SN23]

Thank you so much for replying, I felt this emotional waive hit me in a good way. Without me saying much, you touched on so many things that we are struggling with. The high protein diet with no appetite is the struggle right now. He carries 1500ml of the 7.5 dextrose in his stomach daily. This started for him in April so it is very new. I am very grateful for your response and prayers. Thank you

[SN23 in reply to Bubbasmom]

I feel your pain. And please feel free to reach out to me. I will be very happy to be of any help🙏

And believe me there will be a better day. Just stay strong and let this phase pass🙏

Also for protein can your son take ketoanologs or amino acid supplement. They provide the protein without the urea. I remember my son then took ketosteril.

Some of the plant based proteins that he took were beans, chickpeas, tofu, tempeh. You can also make veggie soups ( instapot blender made it easy to make hot soups). He reduced the sodium from salt and used liquid aminos for sodium/ salt taste among others. Added apple cider vinegar to his salads. I also made tortillas of oats with added kale. And he added oats and freshly ground flax seed with berries and maple syrup etc for breakfast. Hope this helps🙏

[bumblebee_tuna in reply to Bubbasmom]

Hi Bubbasmom, hopefully his appetite will come back once his body gets used to dialysis. I gained about 10 pounds fairly quickly after going on dialysis (I've been on PD for 2 years now).

You mentioned that your son is doing a long day dwell of icodexterian (what you called 7.5). I too was struggling with the machine, drain pain, taking forever to complete the cycles and very very poor sleep. I don't know how active he is during the day, does he have a day job or is he able to do manual exchanges at home? In my second year of PD I ditched the machine, went back to CAPD and am now doing icodextrin overnight with 3-4 manual exchanges during the day. This works much better for me. Bottom line, there are a lot of options in PD and it takes time to find the right one, you just have to keep making small changes until it "clicks" and he is feeling better.

[Bubbasmom in reply to bumblebee_tuna]

Thank you for sharing, he does work at his insistence. I went thru the training with him so if he's running late I'll setup so he can just attach when he gets home. He doesn't want to continue to stay home, so that will be an adjustment for me only if you ask him🙂. I am learning that you just don't walk out of training and it's easy. Everyone is helping me so much, I didn't even know how much I needed the positivity until I got it.

[bumblebee_tuna in reply to Bubbasmom]

Keep strong, PD is hard work - harder than the other modalities out there (Incenter, home-demo) but can also be very rewarding when it works correctly. Working and staying active is great.

[Beachgirl32]

Sorry your son has to start dialysis so young . I started pd dialysis back in February. The manual were really hard on me drainnpain brought me to my knees in pain. Was told I may have to have catheter repositioned. But give it time to move around I was like give it time will this ever stop. When I started on Machince still drain pain give it more time make sure you aren’t contipasted that what they tell you constantly.Well it took months but the drain pain did lesssen now I usually have it uoyppon my third and last cycle on machince only it still uncomfortable but not bringing me to my knees. But it took about six or seven months . I carry 1000 fluid in me. Hey I have failed the ktV test twice past twice once barely they do that to see what type of adjustments need to be made I started seven hours now nine hours on machince. I cant do manual well when I do manual I never have an appetite. Is your son on manual or the machine. Sorry for so many typos in this post my tying finger not working great. Prayers to you and your son

[Bubbasmom in reply to Beachgirl32]

I don't understand the drain pain but the look on his face the first time he felt it broke my heart. He is on the machine so the put tidel in for the first 4 and then on the 5th he does the extra drain which is where he still feels it. We did the training for manual in case of a storm and its a lot so i cant imagine how you manage that. Its a struggle to get him on the machine some days. It hasn't been that long, now that I'm talking about it but it feels like months on the machine vs 1 month. He is also at nine hours and im praying they dont increase it. This is really helpful, I appreciate everyone reaching out.

[Beachgirl32 in reply to Bubbasmom]

Sometimes I put the heating pad on me before the drain and I take tynenol to help ease the pain. If he only been machince a month give it time.

[Bubbasmom in reply to Beachgirl32]

I will, thank you again. They said the heating pad was only to manually heat the bags. I will pull have him try it tonight

[Hidden]

Hello Bubbasmom, it's great to see you take such an interest in your son's treatment. In 2017, I had 3 months of hemo dialysis using a chest catheter and then went on to PD. I was fortunate enough to be on PD for only 6 months as I went from stage 5 to stage 4. My nurses referred to the kt/v test as "kinetics". I was on the machine and I experienced the drain pain very much at times. It was always at the end of the drain cycle when most of the fluid had been drained out and it seemed like the machine just kept trying to get more. There are different modes on the machine and some are less aggressive than others. Talk to the team about trying a different mode. Also, as someone else pointed out in their comment, having feces in your lower bowel does make a difference. You need to be careful but using a saline solution Fleet enema before going to bed might help. Do not use the ones with harsh chemicals in them. He could also try massaging the area where his catheter is and see if that helps when the pain starts. I did not drain well laying down so I had to sit on the edge of the bed or even stand up and dance a bit. It's been a while so I don't remember well but I think there's a way to have the machine abort the drain cycle when it keeps trying to get more and move on to the next cycle.

[Bubbasmom in reply to Hidden]

Thank you. He just had the chest catheter removed and he feels better. He says he has less holes in him. His second day of training was his birthday and I got him to dance with me and we during the pain yo refocus and found that it helped. They have prescribed miralax and lactose but they are aggressive laxatives. I would prefer something more natural but with all the diet restrictions I don't know were to go. It seems like the constipation has gotten worse where he doesn't have a schedule anymore like he used too.

[hope1419]

This is heart breaking. I took the training for dyalisis and got so scared, and I didn'trven know it hurt. I made it my mission to find a donor. I was blessed, and found somebody after an article was published in the local newspaper. Thanks to my donor, I was able to avoid dyalis. If your son qualifies for it, that is the way to go. Work on finding a match. Make sure he is on the waiting list. I was scared of transplant, too, but it is actually really good. As close as normal as I will ever be. I am twice your son's age, and six months after transplant next week. Happy with the results. Praying for you and your son and wishing you the best.

[Bubbasmom in reply to hope1419]

Thank you so much. I am working hard to get him on the unos list.

[metalminded]

Hello Bubbasmom. I spent 6 years on dialysis. A few months in center hemo and the rest PD at home.

I recall the drain pain but mine was never that severe, fortunately.

I wasn’t on any special diet since I was doing dialysis every night for 8 hours. I didn’t have any dietary restrictions. I too suffered from constipation and still do. Once I got into PD my “schedule” went back to my normal.

I was on dialysis in my 30’s into my 40’s and finally had a transplant at 44.

I wish him the best and he will do fine once he’s used to it.

[Bubbasmom]

Thank you. It's so good to hear everyone's story. It makes me so much more hopeful.

[RhenDutchess123]

I have been on PD for almost 3 years and I have had very few problems...I use the Amia Cycler during sleeping What type does your Son use ?

[Bubbasmom]

He uses Fresenius. The only other option he was given was was Baxter which was more manual than fresenius