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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.

trishanna | @trishanna | Dec 31, 2020
In reply to @kamama94 "No more dialysis needed this week, labs are almost normal and neph thinks kidney has recovered..." + (show)
@kamama94

No more dialysis needed this week, labs are almost normal and neph thinks kidney has recovered a little function at least temporarily. Unnecessary dialysis can actually cause some damage. So today's a good day to live! And to enjoy a dialysis vacation.

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Such good news! Any chance of an explanation on how to increase the likelihood this will happen again, or is this a "we don't know why" moment?

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 31, 2020
In reply to @kamama94 "No more dialysis needed this week, labs are almost normal and neph thinks kidney has recovered..." + (show)
@kamama94

No more dialysis needed this week, labs are almost normal and neph thinks kidney has recovered a little function at least temporarily. Unnecessary dialysis can actually cause some damage. So today's a good day to live! And to enjoy a dialysis vacation.

Jump to this post

@kamama94 Whoo-hoo! is an understatement! So happy for you, and I bet you are feeling good about starting the New Year like this! Grateful that you chose your family here to share this news with, and sincere wishes everything continues on an upward trend in function.
Ginger

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kamama94 | @kamama94 | Dec 31, 2020
In reply to @trishanna "Such good news! Any chance of an explanation on how to increase the likelihood this will..." + (show)
@trishanna

Such good news! Any chance of an explanation on how to increase the likelihood this will happen again, or is this a "we don't know why" moment?

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@trishanna, neph and I theorize that my very bad case of shingles knocked out the kidney, with damage showing up about 60 days after shingles onset. Function continued to spiral down over the summer. Then dialysis begun in late summer/early fall gave kidney enough of a rest that it recovered a little, emphasis on little. We both believe this is a temporary recovery, we're just not sure how long it will last. Meanwhile, neph will monitor labs weekly and I know what to watch for in terms of symptoms so if the poor widdle thing gets tired again we can re-start dialysis. Meanwhile, I intend to enjoy the bejabbers out of this "vacay" from 3 days a week hooked to a mechanical kidney. Yippee!

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MGMolly | @Erinmfs | Dec 31, 2020

I'm new to the paratransit bus, but the bus driver clued me in that diabetic medications are the worst. He said that all his dialysis patients were on diabetic medications.

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kamama94 | @kamama94 | Dec 31, 2020
In reply to @Erinmfs "I'm new to the paratransit bus, but the bus driver clued me in that diabetic medications..." + (show)
@Erinmfs

I'm new to the paratransit bus, but the bus driver clued me in that diabetic medications are the worst. He said that all his dialysis patients were on diabetic medications.

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@Erinmfs, it's difficult to know sometimes if the diabetes meds did the damage or if diabetes itself did the damage. Or both. Some dialysis patients suffered kidney damage due to aging or strept infections or blocked kidney stones or shingles or some combination of those.

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fiesty76 | @fiesty76 | Jan 3, 2021
In reply to @kamama94 "No more dialysis needed this week, labs are almost normal and neph thinks kidney has recovered..." + (show)
@kamama94

No more dialysis needed this week, labs are almost normal and neph thinks kidney has recovered a little function at least temporarily. Unnecessary dialysis can actually cause some damage. So today's a good day to live! And to enjoy a dialysis vacation.

Jump to this post

Outstanding news! @kamama94! Yay for you and all you've accomplished!!!

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fiesty76 | @fiesty76 | Jan 3, 2021

@kamama91, Well, if this isn't encouragement for All to get the shingles vaccinations, I don't know what would be! Delighted that your kidneys got the rest and are giving you a reprieve from dialysis but know the efforts and complications from doing the dialysis had to be challenging at best!

Can't remember the last time I heard the word "bejabbers" but it surely brought a laugh and a "Go For A Bejabbers Celebration to the Max!"

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kamama94 | @kamama94 | Jan 16, 2021

New graft placed Wednesday, home from hospital Thursday. Good thrill and bruit, incisions barely tender and graft area bruised abut not sore. Slight kidney improvement continues, though this trend might be interrupted by the physiological effects of anesthesia and vascular surgery. Will know more in a week to 10 days when more labs are drawn. Meanwhile, it's a good day to live!

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 16, 2021
In reply to @kamama94 "New graft placed Wednesday, home from hospital Thursday. Good thrill and bruit, incisions barely tender and..." + (show)
@kamama94

New graft placed Wednesday, home from hospital Thursday. Good thrill and bruit, incisions barely tender and graft area bruised abut not sore. Slight kidney improvement continues, though this trend might be interrupted by the physiological effects of anesthesia and vascular surgery. Will know more in a week to 10 days when more labs are drawn. Meanwhile, it's a good day to live!

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@kamama94 Glad you had the graft placed. Even though you do not need it right now, it may be available to you in the fututre. I sincerely hope that it is not needed!

My kidney function is going down, and may be starting on dialysis of some sort in 2021. Planning to be as strong as I can, for as long as I can.
Ginger

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kamama94 | @kamama94 | Jan 17, 2021

@gingerw, am sending healing vibes. Dialysis is no fun but laughter and camaraderie can reduce the stress along with extended post-dialysis naps.

And I'm living proof kidney function can decline then (at least temporarily) improve.

Life is a crapshoot for everyone but we renal patients are especially aware of that.

I'm pulling for you!

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