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Mentor

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.

fiesty76 | @fiesty76 | Sep 11, 2020
In reply to @kamama94 "The level of professionalism and skill at the dialysis clinic here is impressive! So are staff..." + (show)
@kamama94

The level of professionalism and skill at the dialysis clinic here is impressive! So are staff members' people skills. I say this as a very, very, very picky patient. Clinic is nonprofit.

I can see why patients feel overwhelmed by this process - lots of paperwork, needles, flashing buttons, beeps, tubes, machines. But even though I have almost no direct/hands-on dialysis nursing experience (I was a post-surgery, ICU, and hospice nurse,) medical equipment is so familiar to me, I found it comforting. Despite the white noise of equipment, there was a calm busy-ness that also was very reassuring, along with the good-humored camaraderie of the patients themselves.

No physical discomfort at all! That is, other than the old-hat fibromyalgia-arthritis-etc.-etc. kind.

Came home exhausted and hungry, wolfed down noodles and peanut butter (what a combo!)

Still tired this morning but feel so much better. I know that’s temporary but since it’s true for now I’ll enjoy it.

Yesterday was a good day to live.

Today is a good day to live, too.

And love and hope live here with us.

Jump to this post

@kamama94, Such great news that you are finding the dialysis clinic staff skilled and impressive. That assurance and satisfaction of care means so much for the patient!! Now, friend, shall we discuss your lunch combo choice??? lol I know, I know, some days it is just grab and go anything at hand. If I don't have dinner underway before 5pm, a pb&j or bowl of cereal suffices. Delighted that you are feeling up to posting! Good thoughts are with you.

REPLY
kamama94 | @kamama94 | Sep 11, 2020

Dialysis again today. Not quite as tired as yesterday but will be going 2 days without treatment over the week-end.

What some may not realize is that if you miss even one treatment the toxins build up in your body and make you very sick if they don't actually kill you. Once you've established a regular treatment schedule 2 days between treatments don't pose as much of a problem, especially if you watch your potassium and phosphorus intake. Until I'm on a continuous MWF treatment schedule I may not feel as well as I will later on but who knows?

Just to be clear: nobody knows for certain when but eventually treatment itself will begin to fail and coma and death will soon ensue.

Meanwhile, am hoping the current fatigue and nausea and dizziness hold off until Monday when I go for another treatment.

Because there are things I gotta do!

To all in this forum: hope and love live here. . .

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2 replies
Lagrange 5 | @lagrange5 | Sep 11, 2020

You are an inspiration to all of us.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 11, 2020
In reply to @kamama94 "Dialysis again today. Not quite as tired as yesterday but will be going 2 days without..." + (show)
@kamama94

Dialysis again today. Not quite as tired as yesterday but will be going 2 days without treatment over the week-end.

What some may not realize is that if you miss even one treatment the toxins build up in your body and make you very sick if they don't actually kill you. Once you've established a regular treatment schedule 2 days between treatments don't pose as much of a problem, especially if you watch your potassium and phosphorus intake. Until I'm on a continuous MWF treatment schedule I may not feel as well as I will later on but who knows?

Just to be clear: nobody knows for certain when but eventually treatment itself will begin to fail and coma and death will soon ensue.

Meanwhile, am hoping the current fatigue and nausea and dizziness hold off until Monday when I go for another treatment.

Because there are things I gotta do!

To all in this forum: hope and love live here. . .

Jump to this post

@kamama94 This is a common occurrence with in-center hemodialysis. Plus you have a period of your body adjusting to this new procedure. My husband was lucky enough to be able to do nightly peritoneal dialysis before his transplant. There is a lot of information at http://www.rsnhope.org a website run by a 4x transplant kidney patient.

We are pulling for you!
Ginger

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1 reply
kamama94 | @kamama94 | Sep 12, 2020
In reply to @gingerw "@kamama94 This is a common occurrence with in-center hemodialysis. Plus you have a period of your..." + (show)
@gingerw

@kamama94 This is a common occurrence with in-center hemodialysis. Plus you have a period of your body adjusting to this new procedure. My husband was lucky enough to be able to do nightly peritoneal dialysis before his transplant. There is a lot of information at http://www.rsnhope.org a website run by a 4x transplant kidney patient.

We are pulling for you!
Ginger

Jump to this post

@gingerw, wish I qualified for transplant but too old, no one will do it. So dialysis it is. . . And I'm grateful for that'cause I ain't done yet!

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kamama94 | @kamama94 | Sep 12, 2020

Slightly longer dialysis session yesterday, 3 1/2 hrs instead of 3. Came home, ate something, napped, ate supper, took after supper nap, took evening meds, napped - well, naps are wonderful even if I didn't get anything really constructive done. A bit stronger today but not pushing it. One day at a time.

@fiesty76 It was pasta salad instead of noodles and peanut butter this time.

And today is a good day to live!

Especially since love and hope live here, too.

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 12, 2020

@kamama94 awesome job for you yesterday. You accomplished a lot.

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Lagrange 5 | @lagrange5 | Sep 12, 2020
In reply to @kamama94 "Slightly longer dialysis session yesterday, 3 1/2 hrs instead of 3. Came home, ate something, napped,..." + (show)
@kamama94

Slightly longer dialysis session yesterday, 3 1/2 hrs instead of 3. Came home, ate something, napped, ate supper, took after supper nap, took evening meds, napped - well, naps are wonderful even if I didn't get anything really constructive done. A bit stronger today but not pushing it. One day at a time.

@fiesty76 It was pasta salad instead of noodles and peanut butter this time.

And today is a good day to live!

Especially since love and hope live here, too.

Jump to this post

As a medical professional, you created a rainbow 🌈 of care. You have continued to do so with your caring messages. That rainbow clearly is a part of you.

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1 reply
wickenburger | @wickenburger | Sep 12, 2020

I was diagnosed with Stage 4 kidney failure in 2015 Things slowly progressed with a decrease in kidney function. I was having Gall bladder issues and opted for a Laprascopic procedure. Big mistake, Surgeon stapled off my Bile Duct and after 10 days in ICU my kidneys were no longer doing their job.
So I survived and have been on Dialysis 4 yrs on Thanksgiving. I do Dialysis very well, I am compliant but mostly try and READ everything and manage myself cant imagine doing this for the rest of my life. Hopefully transplant soon

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3 replies
kamama94 | @kamama94 | Sep 13, 2020
In reply to @lagrange5 "As a medical professional, you created a rainbow 🌈 of care. You have continued to do..." + (show)
@lagrange5

As a medical professional, you created a rainbow 🌈 of care. You have continued to do so with your caring messages. That rainbow clearly is a part of you.

Jump to this post

@lagrange5, what a lovely thing to say! You made me blush.

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