Hey Everyone. I'm simply looking for others to chat with about all of this. I want to talk about diets, sleep (or lack there of), coping with the mental exhaustion...ya know, life.
I'm fairly young to the dialysis world and sometimes it would be nice to just vent without others thinking its a malpractice suit happening or that something is drastically wrong, when in reality that's just life now with ESRD.
Alright, I hope yall have a great day and if you believe, May God continue to bless your life.
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Kirkconnell
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Welcome I'm very new to all of this myself my older brother has kidney disease from covid thank God he's going to be ok but he does need a dialysis I think 2 times a week. I don't know for how long but he had a severe case of covid and is still unconscious now so I'm looking for ways to help him in any way I can; because all 3 of us will need some form of support groups & I hope no one minds me joining in also.
Hey, I got a lot of work to do today, just wanted to send a brief "howdy" and will send a better response a tad later. You're at the right site. Look through some of the related posts (click "posts" in the top navigation) on the site and be patient as others sign on and post a response. There's a wealth of info on here, and many many knowledgeable folks who know all things "CKD".
Oh, and if you have not been to this site and gone through the tutorials, (I'm sure others will post other references as well), this is a good resource site: kidneyschool.org
I am LOVING this kidneyschool.org site. Thank you for sharing. It's comical to me that it's a CE type module setting as I am a Certified Pharmacy Technician. lol It's almost like I'm at work, but with better music and I'm on my butt not my feet.
Hey, sorry for the slow reply, so you're a Pharmacy Tech. cool. My daughter is a pharmacist. Glad you're enjoying the site. It's a LOT to take in. I need to go back through and review again, so this was a good reminder to do that.
HI Kirk,I've been on the big D for 6 years. I've probably been thru everything D can throw st one. It's very very hard for me to find people to share with.
Hello. Thank you for the response! So the more I think about it, the more panicked I become when it gets to appointing my POA. I have a very supportive family when it comes to all that is happening - - and that will happen hopefully (kidney and pancreas transplant) - - but when it comes to making decisions about my care, my health, I don't feel that anyone would do the right thing by ME. It's so hard to even think about leaving this burden on someone I love, but to then scrutinize how we communicate or how well they respect my concerns NOW as I'm alive, really just opens my eyes up and its makes me sad.
I feel like I'm not heard and it scares the shit out of me that when I need an advocate the most, I won't have someone who's putting me first in the equation. How was it like when you selected yours?
Choosing a POA was pretty easy. My husband & had talked about it before D was in the picture. He was a volunteer fireman, & he needed a POA/living will. When it was my turn to have my living will done it was a no brainer.
If your not married or have a person in your life you can trust to follow your wishes use your social worker. He/she can help you get your living will. That way, your
directives will be respected. Its kind of a hassle to get it done, because it has to be notarized. My worker was a notary so made it easy. Definitely, get your living will done ASAP. Then there will be no question about your wishes.
I'm very surprised no one has talked to you about a living will. Especially since you need a POA.
As you say all that, it does sound vaguely familiar. I'm sure at some point in the last 11 months it was discussed and I must have pushed it to the side because I wasn't ready to deal with that yet. lol Oh the brain is a lovely, protective organ isn't it?
At this time in my life, there is only one person whom I would feel comfortable with placing as my POA. We've discussed it with her and her husband because I wanted them both to talk about what it before she answered. I love them dearly and we've been close for years now, but again, that is a huge burden to put on someone. Im worried if I put something down in writing I'll make a hard line where there should be a soft one. Idk. Im just venting and rambling now. lol Thank you for talking this through with me.
No problem. I probably spun my wheels for a year or so after I started D to get all that paperwork done. We have mandatory monthly teaching from our nurses. All that includes going over monthly labs, your med list, emergency disconnect, each month has a subject, such as diet, what to do if you can't get to D, Med changes, etc. One of the teaching is about the living will. The POA really shouldn't be a burden for anyone, that's what the living will is for to state your wishes, all the POA has to do is see that it's followed.I can understand it would be difficult without a spouse or close family members.
My worst struggle is diet & weight loss, depression & anxiety. I take meds for the depression & anxiety but I don't always think they work. I have a fairly good support system. Covid has taken a lot of that away from us.
Ttyl
((if you have personal questions, I'm open to sharing my email address))
I feel so what you are saying it is a tuff life and so many issues. I had a transplant for 27 years and am now on home hemodialysis. I am hoping to get another transplant because dialysis is not very good to me, Thanks for letting me vent.
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