Kidney Dialysis
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Hello I'm Joey's mom, yes newbie here

Ok, I admit it! I've been putting off introducing myself. But here I am! Ok, here goes. I am the mother, caregiver, & dialysis tech to my 23 yr old son. He was born w/kidney disease, so I've been doing this a long time! I PD'd him when he was about 8 months old to 2 yrs 3 months, when I gave him my kidney. He's been thru hell, almost dying 4 times by 5 yrs old. He's has survived a potassium level of 9, been on PD, been on HD, survived a crit of 7 (yes 7!!) due to duodenal uclers, survived Post Transplant Lymphoproliferative Disease that caused seizures which caused brain damage (PTLD is cancer; its a very long story! Basically, I had a 5 yr old w/less than newborn capabilities-he couldnt see/walk/talk/hold anything in his hands/remember anything/he couldnt do anything!), survived Steven's-Johnson's Syndrome (due to an anti-seizure med's allergy), now has seizures (they're calling it Adult Onset Epilepsy) , & after 21 years of transplant is now on the transplant list & on hemodialysis (which we do @ home, 5days/week which I do.) I do not have any family support whatsoever. I had no idea this website was here until a week ago. I know & see what my son goes thru, & it kills me. I try to do my best to take care of him, but there's just things I can not take away! I've been so stressed I now weigh less than him lol! I guess I'm, well, I dont know what I'm doing or looking for! I do know that it helps me when I help other people tho! It makes me feel like I matter somehow! Thanks for listening! God Bless all of you!

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Hi Joey mum

I liked to know your name as your more than Joey mum. Wow you sound like you have gone through so much and what a wonderful mum you are for him. You can't have done any more. It's so sad to read the awful times you've had. Joey sounds like a true fighter and that's down to you. Don't ever think your not doing a good job.

I'm glad you have joined this forum and hope it offers you some much needed support and outlet.

Remember you need to look after yourself and allow you some me time as it will allow you to be there for Joey. You deserve a life as well don't let kidney disease take over which is hard to do I can't imagine how hard it is.

All the best

Charlene

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Thank you! My name is Kelli. When I signed up it said not to use names or address, it took me awhile to come up with something. Then I get on & see all names lol! I try to get time for me, but that never works very well. This is the only time I get for me today lol! Gotta do catch up around the house stuff. Wish I had a maid lol, actually I wish I could get maids for all of us lol! You take care too!! We'll be thinking/praying for you also! :)

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Hi Kelli, it lovely to have a name and not just your Joey mom you so much more than that. It must be so hard for you. I'm in end stage renal failure and was also born with the disease but didn't know until I was 21. Had we known before things might have been different but a roll with the cards I've been given and feel lucky as managing with out dialysis. I live on my own but have a great support team of my parents.

I hope you are managing to find some time out. If there no help you can get even if it's for you to have a coffee with a friend.

Take care of your self and much love to you and Joey you've been through so much.

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You are great woman

Mother person don’t forget through all of this to try and care for yourself., I will always pray for you and your son peace love blessings

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Right back at ya Yat! :) You are awesome! Going thru what you are AND taking care of two teenagers-my God woman! That's incredible! Keep your head up & we'll be thinking/praying for you too! :)

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It’s all love ❤️

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Awww! I think I'm actually beginning to have a couple of friends!! OMG! This is awesome! I left u a message on another thread--how are you doing?? U ok??

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❤️❤️❤️❤️❤️ I’m hanging in there how are you and your son?

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ktritsch374gov@gmail.com honey-anytime, anywhere, whatever! I'm so sorry! Cheating hurts to the core of your soul, I know! Huge, HUGE hugs right now!!!! Just know that he's lost out, he's the loser, the other woman will always be the other woman & he cheated on you so he'll cheat on her too! Some men are just like that. Some men will stand by you no matter what & you'll find that one! You will! You're so strong & incredible & amazing! Look @ what you accomplish with your health being poor--you manage to cook, clean, etc., raise 2 teenagers, OMG-you are Wonder Woman! I swear! Seriously his loss! & such a HUGE loss too! Did u understand what I was talking about regarding your kiddos? It's taken a counselor to point it out to me & I'm definitely working on it lol! Hey, anything I can shift off to someone else would be great!! lol! How long ago was the break up? Did it affect your eating/health/labs? (God I hope not! Dont let that B**thead do that to you!!)

Going back to another chore for a minute but am online so I'll hear you ok?! Take care sweetie!! :)

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You are a amazing beautiful strong woman as well thank you we broke up March this year in February the signs were there I knew it was another woman I cry everyday I can’t sleep due to my heartbroken my labs are ok but I don’t eat much I vomit sometimes my heart is broken beyond repair he keep apologizing saying he hate he ruin and lied to me and yes I truly understand what you were saying about my children did you cook dinner

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You matter!! Joey's story is heartbreaking and you will both be in my prayers. I don't know how you've managed this long without support. I truly hope this forum helps you know you're not really alone. Your input will be invaluable to many on this site and you will make a difference for many more than your son.

Are you in the US?

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Thank you debbitoo, you're very kind & your words made me cry! & speechless lol! :) but honestly, thank you! I now have a couple of very good friends because of this site so I'm so very glad I found it! Very glad! I hope you're well & everything is going good for you!

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Hi Joey mom,

I appauld you. You are an amazing mom. You have to find time to take time for yourself, if its only a lunch or mani/pedi. I understand your journey. I myself have been on dialysis 18 years and raise a son on my own. And helping others has always helped me deal with my condition. Contact your state National Kidney Foundation. They are always looking for advocate. Continued blessings to you and Joey.

Angela

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Aw, ty for your kind words-that was sweet to open up my email to! :) I barely have time to call Hopelink for rides let alone go somewhere for a mani/pedi lol! But I appreciate the support & thought! I dont feel like an amazing mom, just a mom like any other mom doing what she's supposed to for her child! Again, thank you! :)

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