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Old 01-10-2016, 10:11 PM   #1
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Default Kidney Disease

Is anybody here living with kidney disease? I find most of the online forums to be depressing, and there aren't (to my knowledge) any face-to-face support groups in Metro Atlanta for people who are not yet on dialysis. For those of you who are in stages 3-5, how do you find the positive reinforcement that you need to live happily and well, even in the face of a serious condition?
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Old 12-10-2016, 10:32 PM   #2
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Getting my AV fistula this week, ready to leap into the great unknown ...
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Old 12-12-2016, 02:39 PM   #3
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I do not suffer from it, but my grandma had major kidney issues - anything with the kidney is complex/a pain. Good luck!
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Old 12-15-2016, 04:58 AM   #4
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Thanks, Xyantha Reborn.

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Originally Posted by Xyantha Reborn View Post
I do not suffer from it, but my grandma had major kidney issues - anything with the kidney is complex/a pain. Good luck!
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Old 02-04-2017, 01:50 AM   #5
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Dear Cynthia & Xyantha,

I too have been kicked and thrown into the kidney problems arena. I am going to post my misadventure but on a separate thread - so not hijack yours. In summary tho, this will probably be the fight of your life.

My best advice is research ths for yourself.
Get the best doctor you can - you willl need help.
Don't give up - do your best to "fight like a girl ".
May the force be with you.

M2M
Mooretome.
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Old 02-05-2017, 02:56 PM   #6
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My brother's kidneys have failed and he is on dialysis 3x a week. We're close and I've been involved through it all. He has had quite a struggle the past year. Ask your doctor about getting counseling and it may also be offered at the clinic where you get dialysis.

I've asked him many times if he has formed relationships with the other patients who have dialysis at the same time and he tells me that other than casual chats they pretty much don't talk to each other and spend the time watching TV, reading, or sleeping. I really wish he would find a support group and I know he would enjoy it, but he's not seeking one. So I support him the best that I can.
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Old 02-06-2017, 09:39 PM   #7
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He is very lucky to have a close sibling. It can be hard to be stuck in the vise of watching loved ones suffer.
------------
"better to have tried. Better to take the risk. Better to have learned than let this world tear you down. Half our life is spent wishing for something else. The other half is lost in a breath". - Take the Risk - Bane (2008)
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Old 02-06-2017, 10:55 PM   #8
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n
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My brother's kidneys have failed and he is on dialysis 3x a week. We're close and I've been involved through it all. He has had quite a struggle the past year. Ask your doctor about getting counseling and it may also be offered at the clinic where you get dialysis.

I've asked him many times if he has formed relationships with the other patients who have dialysis at the same time and he tells me that other than casual chats they pretty much don't talk to each other and spend the time watching TV, reading, or sleeping. I really wish he would find a support group and I know he would enjoy it, but he's not seeking one. So I support him the best that I can.
RealMe, It's good (change to great) he has a helper in this. We all need close support at this time. I can give you part of the story how this has affected me. It is not finished yet, I still am sitting in a similar waiting room.

I am a natural talker - I worm my way into folks when I should "shut the f&%k up". I have been in many medical waiting rooms in my
sixty++ years of life. And your bro, is right. Kidney disease patients are different. I have not been on dialysis yet (I will explain later). Neither have I been in a support group (explanation also coming later).

Perhaps most of the others in the room are afraid to hear others' stories? For most of us it is unknown territory. We don't want to hear or see what the journey is like. I first ran into this population in a wound treatment center. The wounds were numerous and scary. Dialysis ports, rejection of treatments. and trying to keep toes, feet, and legs from necrosis (and subsequent amputation.) There are more complications, but that's enough for starts. (I like the "smiles icons on my right" but I will pass on them until later - in my story.)

Maybe you could suggest some ways your bro could "stir the pot" a bit? Things that might startle his fellow passengers? Startle some conversation by: reading a book upside down, maybe quietly, snickering for added effect? Bring a laptop and drawing some strange (but tasteful) pictures or strange text (like Klingon armaments). Or watch a unusual but vivid movie (like "Jesus Christ - Superstar!). Let others watch the screen, but not the sound? Watch "Les Miz" and quietly salute Russell Crowe.)

If a kid is watching, tone the effects way down or mom or dad may smack your brother (or their kid) for laughing. My brothers and I were always trying to do stoopid stuff - until mom came in and made us go pull weeds or dig rocks out our backyard.
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Old 02-08-2017, 04:04 PM   #9
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He's a very friendly charismatic person but his treatments are difficult with blood pressure drops about 75% of the time so he's not chatty when he's there. It's his journey, I know, and I try really hard not to get too wrapped up in my own sadness about it.

What is your journey?
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Old 02-08-2017, 04:06 PM   #10
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Quote:
Originally Posted by socrates74 View Post
He is very lucky to have a close sibling. It can be hard to be stuck in the vise of watching loved ones suffer.
So true. Sadly part of life though. It was difficult with my mom in her last years and now this with my brother.
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Old 02-19-2017, 10:28 PM   #11
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Quote:
Originally Posted by RealMe View Post
He's a very friendly charismatic person but his treatments are difficult with blood pressure drops about 75% of the time so he's not chatty when he's there. It's his journey, I know, and I try really hard not to get too wrapped up in my own sadness about it.

What is your journey?

Real Me, I am working up to that part. There have been some complications. One is it is hard mentally for me to put in words. Two it is hard to write down due to physical constraints. I am finding I need quiet, really good lights, and not be to tired. These things are hard to find at my chaotic home. Finally, new outbreaks that got me in trouble initially - are still breaking out.

I am not whining about all this. These are all parts of modern life and to ignorn them, or stop trying would have bad results. I continue to fight but I am often not equal to the task. Answer - Fall back, regroup, lick wounds, and got for it again. Have talks to myself and anyone else who will listen and not put me in the nut category.

The nut category reminds me of the movie Best In Show. The man taking his Coonhound to the International Dog Show, was talking to an unknown rider as he drove a RV across the US. "I used to aggrevate my mom when I was little by naming nuts. Pine nuts, hickory nuts, peanuts, pistachio nuts, walnuts, macademia nuts "

This stuff distracts me all day long. It also drives my husband crazy

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Old 04-02-2017, 08:06 PM   #12
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Thank you, moore2me, RealMe, and Socrates. Please accept my apologies for the late response. I do try to stay positive, but it can be a challenge when online kidney forums are filled with stories of disappointment and desperation. I'm determined to thrive in spite of this illness, but I realize that our bodies aren't always fully under our control.

I wish you the best.
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