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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
Teresa, Volunteer Mentor | @hopeful33250 | Oct 25, 2020
In reply to @kamama94 "The battles continue. I wonder what's next or have all the shoes dropped by now? Can't..." + (show)
@kamama94

The battles continue. I wonder what's next or have all the shoes dropped by now?
Can't get permacath wet so no showers allowed, only sponge baths/chair baths. Arm graft won't be ready to use until the first part of Dec so have to continue dialysis via permacath til then. But Medicare will only pay for 2 more weeks of nursing help with bathing. (No help needed with shower but must have help with sponge bath and never mind the details, LOL.) So what am I supposed to do for skin care for 2 weeks when Medicare certification runs out? So far nobody has an answer for that except that horrible phrase "nursing home," which I absolutely will not do.
Yet ADLs are a constant struggle - managed to wash towels and cloths yesterday, will try to do clothes today. Docs and nurses say energy will improve but other patients say no. I want to believe the former but logic tells me listen to the latter.
Thank goodness for Hy-Vee's already prepped/peeled/etc. fresh veggies, they make fixing meals so much less work even if a bit pricier than doing all that peeling and slicing on my own.
So in spite of all the glitches, today's a good day to live.

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I'm always amazed at your positive attitude, @kamama94, in spite of some of the challenges you face. I pray that your energy will increase as the days go by and that you will what you need to complete the ADLs.

Once the Medicare certification runs out, are you able to use any pre-moistened products for skincare?

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1 reply
kamama94 | @kamama94 | Oct 25, 2020
In reply to @hopeful33250 "I'm always amazed at your positive attitude, @kamama94, in spite of some of the challenges you..." + (show)
@hopeful33250

I'm always amazed at your positive attitude, @kamama94, in spite of some of the challenges you face. I pray that your energy will increase as the days go by and that you will what you need to complete the ADLs.

Once the Medicare certification runs out, are you able to use any pre-moistened products for skincare?

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@hopeful33250, thanks for the kind words. My issue is mobility/limited range of motion/limited reach which hand-held shower mitigates. Otherwise I can't treat all the places that need care. I have all the supplies I need, my arms just aren't long enough, LOL, and my back doesn't bend where I need it to. 🙁

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1 reply
Lagrange 5 | @lagrange5 | Oct 25, 2020

With all of the challenges that you have overcome and with the strength of your resilience, you’ll always continue to find a way. It’s all part of the journey that you purse so well.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 25, 2020
In reply to @kamama94 "@hopeful33250, thanks for the kind words. My issue is mobility/limited range of motion/limited reach which hand-held..." + (show)
@kamama94

@hopeful33250, thanks for the kind words. My issue is mobility/limited range of motion/limited reach which hand-held shower mitigates. Otherwise I can't treat all the places that need care. I have all the supplies I need, my arms just aren't long enough, LOL, and my back doesn't bend where I need it to. 🙁

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@kamama94, I have recently been introduced to the world of assistive devices and aids for patients with disabilities. Have you ever looked for bath sponges or brushes on such a site or medical supply store?

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1 reply
kamama94 | @kamama94 | Oct 26, 2020
In reply to @rosemarya "@kamama94, I have recently been introduced to the world of assistive devices and aids for patients..." + (show)
@rosemarya

@kamama94, I have recently been introduced to the world of assistive devices and aids for patients with disabilities. Have you ever looked for bath sponges or brushes on such a site or medical supply store?

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@rosemarya, LOL, you wouldn't believe the things I've bought, built, tried. My back won't bend where I need it to and I can't reach around certain parts of me. 🙁

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fiesty76 | @fiesty76 | Oct 26, 2020

Good morning, @kamama94, I so admire your "getting it done spirit"! and so wish I could be there physically to help with some of the chores required.

Hope someone here can suggest possible help for when the Medicare runs out for nursing help! Sending you strength vibes and opportunities for relaxation during these arduous times. Hugs!

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kamama94 | @kamama94 | Oct 31, 2020

Dialysis patients seem to genuinely care about one another. When we greet each other by asking, How are you, we actually want to know the answer. Replies vary from, Doing well, thanks, and you? to My graft needs to be replaced, how are you? There’s a camaraderie in the dialysis clinic similar to that of folks at sea in a lifeboat and there’s no shortage of humor. Recently someone was a bit disrespectful to an elderly patient who corrected the slight by saying, “A little respect, please – I have underwear older than you!” Joking about our aches and ills and concerns mitigates a lot of the anxiety attached to the uncertainty of end stage progression.
The caring and the humor make it a good day to live.

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 31, 2020
In reply to @kamama94 "Dialysis patients seem to genuinely care about one another. When we greet each other by asking,..." + (show)
@kamama94

Dialysis patients seem to genuinely care about one another. When we greet each other by asking, How are you, we actually want to know the answer. Replies vary from, Doing well, thanks, and you? to My graft needs to be replaced, how are you? There’s a camaraderie in the dialysis clinic similar to that of folks at sea in a lifeboat and there’s no shortage of humor. Recently someone was a bit disrespectful to an elderly patient who corrected the slight by saying, “A little respect, please – I have underwear older than you!” Joking about our aches and ills and concerns mitigates a lot of the anxiety attached to the uncertainty of end stage progression.
The caring and the humor make it a good day to live.

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@kamama94 How true! The endorphins released with smiling, laughing, or a positive sense of mind, seem to dull the pains, don't they?

I hope you are doing well today, and that your body is getting used to dialysis procedures now.
Ginger

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fiesty76 | @fiesty76 | Nov 2, 2020
In reply to @kamama94 "Dialysis patients seem to genuinely care about one another. When we greet each other by asking,..." + (show)
@kamama94

Dialysis patients seem to genuinely care about one another. When we greet each other by asking, How are you, we actually want to know the answer. Replies vary from, Doing well, thanks, and you? to My graft needs to be replaced, how are you? There’s a camaraderie in the dialysis clinic similar to that of folks at sea in a lifeboat and there’s no shortage of humor. Recently someone was a bit disrespectful to an elderly patient who corrected the slight by saying, “A little respect, please – I have underwear older than you!” Joking about our aches and ills and concerns mitigates a lot of the anxiety attached to the uncertainty of end stage progression.
The caring and the humor make it a good day to live.

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@kamama94, Love the positive attitude and "can do" spirit you bring with your posts! Thank you for the insights you bring and the model you are for the rest of us. Humor and good food are two of my favorite antidotes and healers for almost any occasion but especially appreciated on those more difficult days. Sending you hugs and heaps of admiration.

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kamama94 | @kamama94 | Nov 10, 2020

Rcipe update: Dialysis cllinic staff delighted to get my recipe collections and look forward to dialysis diet tip collection which now am working on, albeit quite slowly.

So-so week-end, not much energy. Then Monday dialysis yesterday wore me out - came home, ate early supper, napped, got up for meds then napped again, got up for bedtime meds & snack then slept all night. Felt up to watering the green pets this morning and doing CPAP maintenance. Tired again but not as frustrated about that as I used to be. Today's still a good day to live!

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