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Im on the phone with my friend who is on at-home dialysis. She has been awaiting a kidney for 5 years. She lives alone and does everything alone. She is currently preparing for her nightly 13 hour dialysis session. She must disinfect her machine and all of the components, drag gallons of water for the machine, make sure she has water near here because she cannot move during the procedure, put away the empty dialysis water boxes in the hall, put the cat in its bedroom because she cannot risk the fur or dander near her machine, make sure the house is safe and secure, make sure appliances are off and her phone is charged. Everything in her life and all of her chores and responsibilities must be precise and time-allotted for specific activities right down to being with her cat and giving her attention and love. Her sink must be sanitized for washing her hands with a special sanitizer for three timed minutes after which time she cannot touch anything before handling the water bags. She does all of this at night including inserting her own needles and catheter. She does everything in her day including sleeping, to achieve her daily mandatory goal of hooking herself up to her machine for thirteen very long and lonely hours. And after the thirteen hours, it takes her half an hour to disconnect herself and tear down the machine and dispose of waste material. That has been my friend's life for a very long time. :[

MsAnneThrope 5 June 23
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10 comments

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1

My very good friend received a kidney a year a go after a 6 year wait. He is doing great, and I'm so happy for him. I hope your friend's kidney comes soon. Eveyrone should be a donor....I am.

1

She opted for that instead of 3 hrs at a center???? that sounds terrible my sis did it at home too and i don't know why she didnt get infected she was not clean at all and my brother goes 3 times a week now and though it lengthens their lives it also has bad stuff it steals calcium and there are other diseases that happen after 5 yrs its miserable and the place they insert the needles never heals its nasty

She says that doing it at home retains ability to urinate. She started out at dialysis clinic but too painful and most lose ability to urinate over time. It's a different process there.

@MsAnneThrope my brother hasn't peed in over 5 yrs

@MsAnneThrope
so much we don't know til we have it ourselves or a relative does

2

That is so sad. I hope she gets a kidney soon. I keep reading about stem cell research where people are growing their own organs, scientists using humanized pig organs, etc., so I hope research progresses rapidly.

Groundbreaking research means pig organs could soon be transplanted into humans [independent.co.uk]

3

MissAnneThrope (I like the name 😉 ),
commend her for her tenacity (along with many others here). Bottom line: please register to be an organ donor! It's not difficult, especially if you've donated blood. You could save lives. One can survive with only one kidney, or donate part of the liver, as it regenerates.
I believe that organ donation registry offering should be given to all (excluding minors) seeking a driver's license. The choice to donate should remain, but I believe that all should be informed and given the option to register.
On another note, I believe that CPR and basic first aid should be taught as part of driver education. Adolescents entering the workforce and gaining independence should be equipped with this knowledge for emergency situations. Again, the choice and ability to offer/use it remains theirs, but couldn't we better empower our future generations in supplying this knowledge?
I'm sorry, I digress--I do hope your friend gets relief soon, and that she appreciates your kind words.

I am a DL organ donor, is there some other special registration? I read once that it was important to tell fam and friends. I do, but all I've ever done is select "yes" on my drivers license though.

@MsAnneThrope a web search might lead you to non-profit donor registry in your area. Here in Ohio, we have Lifeline, not sure of others. I know that Red Cfoss does the HLA Type testing if you're an aphoresis donor (platelets only). Not sure if that info is shared with donor searches or not, but could be a valuable link. Good luck!

2

Your friend has my deepest admiration for her perseverance! Please say hello to her for me.

5

Respect to your friend. I used to volunteer on the dialysis bus that went around the county at odd hours, picking up patients, mainly people in wheelchairs. Our country had no facilities. I know what dialysis patients go through. They have End Stage Kidney Disease, with the emphasis on end stage, unless there is a transplant in the future.
So, hearing about your friend doing hemodialysis at home, over night, is a great story of progress. She should have an aide come to assist her, at least sometimes. Has she contacted the Nartional Kidney Foundation about that?
I am a T1 diabetic and wear an insulin pump, My two years on the dialysis bus made me so motivated to work as hard as I can on keeping my blood sugar uner control.

Best regards to your friend. I need a pancreas; she needs a kidney. Why can't the robot designers work on those things instead of drones for Amazon!!!!!

4

We often feel that our lives our difficult and then we read about people like your friend and realize how fortunate we truly are in our lives. I wish her the best and hope that a kidney becomes available for her soon.

2

I will chat on the phone with anyone as a phone buddy

5

Wow ! that is one strong woman !

3

Wow, I hope that a kidney that is compatible with her will be available soon.

yea me too but that also has its drawbacks lifetime expensive drugs so the kidney doesn't get rejected and careful living for the doner and the recipient its scary and amazing and horrible and wonderful

@whiskywoman Yes I have two friends that had a transplant, one of them is coping great but the other one is not so. One is very positive and the other one is only finding negativity in her life. Such a shame.

@Jolanta so sorry for the one transplant isn't a cure all for everyone and my brother started taking care of himself the moment he found out so he sorta tried to do better since he won't eat a veggie or anything healthy lol but he did watch his sugar and change many things

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