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What's your experience with dialysis? Give & get support here

Posted by Rosemary, Volunteer Mentor @rosemarya, Mar 7, 2019

Dialysis is required if your kidneys don't function adequately on their own. Your doctor will discuss with you the type of dialysis that's best for you. Dialysis treatment is a serious responsibility, You'll need to work closely with your health care team who have experience in managing dialysis. Open communication with your health care team is essential to your overall health.

Fellow patients are a wonderful source of support and practical information because of a shared dialysis experience.
If you are a dialysis patient, or loved one of a patient, what are some things that you have experienced that might be helpful to someone who is new to dialysis? What kind of life adjustments have you had to make? How has it affected your everyday life?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 31, 2020
In reply to @kamama94 "It's Monday now and I'm still here. Barely. Feeling awful. But here. Permacath tomorrow, dialysis Wed..." + (show)
@kamama94

It's Monday now and I'm still here. Barely. Feeling awful. But here. Permacath tomorrow, dialysis Wed - if I can last that long. Positive vibes welcome.

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@kamama94, Thinking of you and encouraging you to seek ER care or to call your doctor with any concerns between now and your appointment. Feeling awful and being barely there are worrisome to me.

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kamama94 | @kamama94 | Aug 31, 2020
In reply to @rosemarya "@kamama94, Thinking of you and encouraging you to seek ER care or to call your doctor..." + (show)
@rosemarya

@kamama94, Thinking of you and encouraging you to seek ER care or to call your doctor with any concerns between now and your appointment. Feeling awful and being barely there are worrisome to me.

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@rosemarya, neph # is on speed dial, she told me what to watch for and felt I'm stable unless something changes but I'm worn out. Actually looking forward to having tomorrow's procedure.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 31, 2020
In reply to @kamama94 "@rosemarya, neph # is on speed dial, she told me what to watch for and felt..." + (show)
@kamama94

@rosemarya, neph # is on speed dial, she told me what to watch for and felt I'm stable unless something changes but I'm worn out. Actually looking forward to having tomorrow's procedure.

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@kamama94 , I should have known that you and your neph are on top of this. I just am in that mom mode.
What you said about 'actually looking forward' to tomorrow's procedure, has hit home because it does get to that point, as unbelievable as that might sound to a non-patient.
What time are you scheduled tomorrow? How long is the procedure supposed to last?

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kamama94 | @kamama94 | Aug 31, 2020
In reply to @rosemarya "@kamama94 , I should have known that you and your neph are on top of this...." + (show)
@rosemarya

@kamama94 , I should have known that you and your neph are on top of this. I just am in that mom mode.
What you said about 'actually looking forward' to tomorrow's procedure, has hit home because it does get to that point, as unbelievable as that might sound to a non-patient.
What time are you scheduled tomorrow? How long is the procedure supposed to last?

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@rosemarya, thanks for "mom-ing"me, felt nice. Originally I was to be at hosp at 12:45 but they bumped it up to noon, permacath was supposed to be at 2:30 but they've bumped that as well. Procedure itself is 20 min or less but preop & postop take some time. Also, the handi-van trip time is already scheduled and I can't change it so I'll get there when I get there. They could always start without me, LOL.. Since originally I wouldn't have been ready to come back home until after handicap rises closed for the day, a friend will pick me up at the hosp afterward, load my chair in his pickup and is wife will drive me home while he follows with the chair.

At least that's where things stand now.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 31, 2020
In reply to @kamama94 "@rosemarya, thanks for "mom-ing"me, felt nice. Originally I was to be at hosp at 12:45 but..." + (show)
@kamama94

@rosemarya, thanks for "mom-ing"me, felt nice. Originally I was to be at hosp at 12:45 but they bumped it up to noon, permacath was supposed to be at 2:30 but they've bumped that as well. Procedure itself is 20 min or less but preop & postop take some time. Also, the handi-van trip time is already scheduled and I can't change it so I'll get there when I get there. They could always start without me, LOL.. Since originally I wouldn't have been ready to come back home until after handicap rises closed for the day, a friend will pick me up at the hosp afterward, load my chair in his pickup and is wife will drive me home while he follows with the chair.

At least that's where things stand now.

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@kamama94, I wanted to let you know that I've been following your journey. I'm looking up at the sky and see if lit with countless stars. The fascinating part is that when you look up at the sky, you can see the same stars. That's how we're watching over you and accompanying you virtually, giving you strength for tomorrow and beyond. Sleep well.

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trishanna | @trishanna | Sep 4, 2020

@colleenyoung @rosemarya @gingerw @kamama94 Kamama would have had her first dialysis treatment by now, I think. Concerned we've not heard.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 4, 2020
In reply to @trishanna "@colleenyoung @rosemarya @gingerw @kamama94 Kamama would have had her first dialysis treatment by now, I think...." + (show)
@trishanna

@colleenyoung @rosemarya @gingerw @kamama94 Kamama would have had her first dialysis treatment by now, I think. Concerned we've not heard.

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@trishanna I am concerned, also. I sent her a private message but have not heard back.
Ginger

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 4, 2020
In reply to @gingerw "@trishanna I am concerned, also. I sent her a private message but have not heard back...." + (show)
@gingerw

@trishanna I am concerned, also. I sent her a private message but have not heard back.
Ginger

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I have not seen or heard anything either.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 5, 2020
In reply to @trishanna "@colleenyoung @rosemarya @gingerw @kamama94 Kamama would have had her first dialysis treatment by now, I think...." + (show)
@trishanna

@colleenyoung @rosemarya @gingerw @kamama94 Kamama would have had her first dialysis treatment by now, I think. Concerned we've not heard.

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@trishanna @gingerw and @rosemarya, Unfortunately, I have not heard anything yet either. @kamama94 was very fatigued when she posted 4 days ago and was scheduled for treatment 3 days ago. My hope is that she is recovering and resting. We all know how draining this can be. Possibly she is reading our messages, but too drained to respond.

With that hope, Kamama, I'm sending you strength enveloped in a gentle embrace. Your virtual friends look forward to hearing from you when you're able. Until then, rest well and take care of yourself.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 6, 2020

For those of you who have followed @kamama94 impressive kidney-friendly recipe books and recent issues with sudden decline of function, she has asked I send out an update. After last week's permacatheter procedure on Tues she was readmitted to the hospital with complications. She had dialysis in-hospital Wed and Fri, and is home now. She will be having in-center dialysis, and has been approved for two weeks [I hope more!] of home health. Her family stepped up to help modify her living space to accommodate her new-to-her lifestyle. She will post when she has more energy. I know we all wish the best for her.
Ginger

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