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Kidney Disease
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Today’s the day

Dialysis training starts today so I guess that means that I am officially on dialysis. Wow! Just reading those words is so surreal and I can’t believe I’m referring to me! I had my catheter drained on Friday and that went well until I experienced drain pain for the first time. That was so unpleasant and from what I read is a common occurrence with PD dialysis. Great!

Wish me luck today! As always thanks for listening!!

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All the best Nikki I hope the training goes well and that PD goes well for you and that the pain eases when draining. I know what you mean about it all feeling surreal, for so many years we build up to this time but never think it will happen or hope it won't.

I have my start date for HD on the 14th January. Having home assessment done tomorrow and have started training but still doesn't feel real.

Good luck and have a lovely Christmas

Charlene

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Thank you! Have a merry Christmas as well!! Good luck with your home assessment and training!!

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Wishing you Peace today Nikki....This too Shall Pass...We have to remember those that have done this before us...They say it gets easier....They are surviving...just as we will...Holding you in my Heart.....

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Thank you!! Your message made me smile ❤️

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UPDATE. Well day one is over. I think it went well. There is so much to learn but I will get it. I learned how to do manual exchanges which wasn’t so bad other than the the drain pain. Drain pain is the pits!! Hurts so bad but it’s supposed to get better with time. They told me I’ll have about 60 boxes of supplies delivered to me for the month.

I just wanted to check in to say I’m ok and I made it through day one :).

Thanks for listening!

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Good job my Friend....60 boxes ...wow...how many exchanges do you have to do a day?....I thought about you all day...hoping you were doing well....thank you so much for posting !

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60 boxes for the first month just because it’s my initial order. They say it shouldn’t be that bad each month. My prescription isn’t written yet so I don’t know how often and for how long I have to do it. I definitely like the manual over the cycler though. The drain pain is less intense on the manual exchange but what ever they tell me to do I guess I have to do!

Thanks for thinking about me!! :)

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Good to know...can you switch to manuel if you want ?

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Not sure. It’s one of my questions for my nurse tomorrow. I sure hope so!!!

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so by a cycler....does that mean the machine ?...hope not a dumb question...and did you do it at home today ?

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No such thing as a dumb question. Yes they call my machine a cycler.

My first day alone at home is on Friday. I’m really nervous!!!

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they are comming to your house ?

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Oh no. After my 5 days of training they feel that I will be ok to do dialysis on my own at home. Well, my 5th day of training is on Friday...then I’m on my own

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How does the solution feel ?...is it a strange sensation ?....that will be my last question...i am sure you are tired and want to rest.....thank you....shelly

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It’s no problem!! The solution isn’t bad. I really don’t even feel it filling me up. It’s the drain pain that I’m really having a hard time with. It hurts so bad. Lucky it doesn’t hurt the whole time it’s draining. Just towards the end of the drain. They tell me it will get better.

Let me know if you have any other questions. I’ll be happy to answer them 😁

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i know you would...but i want you to rest and pat yourself on the back..i am patting you on the back !!!...take care and i will talk to you soon...i am here for you too...still holding your heart......shelly

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Thanks Shelly! Take care!! I’ll be in touch soon

Nicole

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How did today go....a little easier i hope...

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Actually it was a little easier..,after my nervous breakdown...there was tears and all lol

I did the cycler the whole time. No manual exchanges. I was able to do the set up pretty much all by myself. I was even able to withstand the drain pain which wasn’t too bad today

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Tears ....i understand that...its so life changing...i cry about it now and i am not on Dialysis yet

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Totally life changing! I am just so scared that I am going to do it wrong. I’m so afraid of getting an infection. Too many infections then I have to switch to hemo and I don’t want thaf

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i know...i hate the though of hemo...i am not sure which dialysis you are on..i thought the kind that uses a cycler was for nightime when you sleep....

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I’m on PD dialysis (peritoneal dialysis). Yes- the cycler is for at night when I sleep so my days are dialysis free. I’m only doing it during the day this week for training. Friday night is my first time alone

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oh...okay...i get it now..lol....i am glad to hear the drain pain is getting easier...and just be careful with keeping things clean ..i bet you will do it perfect...because you are so aware of it..from alot of stories i have read lots of people never get infections because they follow the steps exactly the same each time...some times being a nervous nellie can come in handy....i wanted to also mention that my oldest daughters name is Nicole....Nicoles are awesome People ...

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Lol I am a nervous Nellie :)

That’s awesome that your daughters name is Nicole!

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i know...and spelled the same way...i think its an Omen...do you have children ?

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No kids. Just a senior cat

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aww..kitties are fun...we have a Chiwinnie....doxen..chihahua mix...quite a character and good friend....our girls are all grown up..Nicole 39 and Jacklyn 34...lucky that they live here...Nicole is a Nurse and interior decorator...she is helping me turn my dining room into a PH Dialysis Center..she is making it very comfortable with lots of ideas to hide all the supplies...lol

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That’s really good. I unfortunately have to keep all my supplies out since I live in an apartment so I’m limited in space. I love chihuahuas!

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he was a rescue dog from Humane Society...so fun for us old people..lol...have you read anything about the artificial kidneys they have been trying to get developed ?

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I have. Everything I’ve read say it’s pretty close to actually working. That would be so great!

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i know !!...the biggest problem is the blood clots...but i was reading that they have recently found a coating they can apply that stops that from happening...they have started Human Testing and could be available as soon as 2020-2025...with no rejection !!...i like the one that is about the size of a lighter...when they get that all figured out , you and I will go shopping !!

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Sounds good to me!! 2020-2025 is right around the corner

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it really is...and doing the PH Dialysis will keep our veins healthier so we can have better success !!....what color do you want ?...lol

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Lol purple please :)

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hello...good day today ?

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Hi! It was ok. My last official day of training. I have my home check tomorrow then I’m on my own..

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That will be good...that will help "normalize" your life again...i am sure if you get in a snag they are just a phone call away....thats what my PH Trainer told me anyway......When we get tangled up...we just Tango on.....Al Pacino...Scent of a Woman

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Good movie! Yes, there is always an on call nurse to help if I get stuck

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All the best! Drain pain is honestly just an annoyance once you get used to it! It definitely hurts for sure, but hopefully it will get better with time! I'm glad that your first day went well! You'll be a pro in no time. Keep us posted and Happy Holidays!

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I hope so!! It was pretty bad today!!

Happy Holidays to you as well!!!

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Nikki,

Best of luck to you. I am a few weeks behind you in the process so very interested in your progress with PD.

Fleo

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Thanks!! I’ll be updating as I go through the process :)

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Wishing you Good Luck! You can do it!

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Thanks so much!!

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Thanks so much for the updates and details as I’m not far behind you! Anything you have to tell about Pd is interesting to me. I’m always afraid of the unknown. You are just doing so awesome. I hope I can learn it as easily as you. I will be doing manual. Because where I live, electric outages are common and not always speedily fixed! That’s one thing I don’t want to worry about. Continued prayers as you go thru the process and get better and better. Also stem cell therapy is being developed for kidneys as we speak. So many things on the horizon. We can make it! God can do anything ❤️

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Happy to help! I definitely understand what you mean about being afraid of the unknown!! My nurse dropped off my machine tonight so tonight’s going to be my first time alone. I’m tired but I’m trying to postpone going to bed because I’m so nervous!! I wish I had the time during the day to do manual exchanges because the drain pain is less intense doing manuals as opposed to the cycler.

I wish you all the luck in what’s to come. I’m happy to answer any questions that you might have along the way!!

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Thank you so much. I’m praying for you tonight. I know you’ll do great. I’m here too if you need to talk. I don’t have as much knowledge but tons of support😀😀😀😀

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Is there any way to slow down the flow when your cycler drains ?

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They set me up for tidal. So the machine doesn’t completely drain me. Hopefully that will help

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I hope that tidal helps...alot of people seem to complain about that...I have heard people on the manuel PH just clamp off the hose a little bit....

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I don’t want to clamp because it’s just delaying the inevitable

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How did your first night go ?....

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It was rough. The drain pain was bad and I did not sleep much. I’m really hoping I get used to it. I guess I have no choice but to get used to it since this is my new life now. I’m on cycler for 7 hours so maybe if I get on it earlier I can get off it earlier. I’ll figure it out

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Does it drain and refill all night ?

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For me 4 times for a total treatment of 7 hours

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Hang in there Nicole....They all say it gets easier...I bet if the people that designed these treatments had to actually use them, they would have found better controls for the Drain...Holding you in my Heart....Shelly

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Thanks Shelly!!! I’m trying

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