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.

@kamama94

This is Tuesday. Some American Indians say, "Today's a good day to die," as a statement of bravery and determination. Whenever I hear or read that I think to myself, "It's also a good day to live!"

Hope everyone has a good day!

Love and hope live here.

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@kamama94 I am standing right beside you, my arm around your shoulder. I hope you have a good day, also! How has home health person been for you?
Ginger

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@gingerw

@kamama94 I am standing right beside you, my arm around your shoulder. I hope you have a good day, also! How has home health person been for you?
Ginger

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@gingerw, Oh, so that's who had an arm around me! Thanks! So far a goood day cause I'm still sucking air. Home Healh not here yet but have great neighbors and things going pretty doggone well. Will be posting a longer rant here later. Why? Cause I can! Hearts and flowers to you and all my buddies in these groups.

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About caregiving:

As a retired nurse who now receives nursing care herself, I'd like to share some thoughts about attitudes and care delivery.

It's important to remember that if we're helping someone, that someone already has difficulties so patience is a must. But so is firmness. People requiring help need to know parameters at a time when there are many unknowns. Shouldn't need to be said but empathy is a must as well but not taken to extremes; too little emotion makes for inefficiency, too much emotion can paralyze the caregiver's ability to deliver the needed care. Yet there even are times when a cavalier attitude can be helpful.

Here is a RL example: While I was in the hospital recently, a nurse brought me a medication quite awhile after a meal despite that the medication instructions are to take with food. I explained that I already had gastric and digestion problems and quoted the "take with food" instructions. The nurse replied that people took this medication without food all the time.Not the right kind of cavalier attitude. It not only dismissed physician/pharmacist instructions, it dismissed my concern and supported less-than-excellent caregiving. Fortunately I had squirrelled away a small piece of bread so took my pill while the nurse watched then followed up with the bread after she left the room. At the risk of sounding petty, I'd like to remind everyone that ill people don't always have much tolerance for brusqueness on the part of a caregiver.

Compare the above incident with one with a different nurse: Different nurse brought in the medication. I mentioned it should be taken with food. Different nurse admitted she did not know this (nurses cannot possibly know/remember EVERYthing, c'mon!) I explained the instructions were on the medication bottle I had brought with me and this was important because I already had tummy trouble.She replied cavalierly - BUT appropriately with good humor! - "We can't have that! We want you to feel better. Will crackers be ok?"

I said yes, she said she'd be right back, ducked out of the room, returned in a flash with crackers and offered applesauce or peanut butter (I declined but nice of her,) gave me my pill and the next time she brought me that med she brought crackers, too!

Even if you're not a tech or nurse or doc or pro caregiver, it's important to balance empathy with objectivity and act out of true compassion but with good humor.

Which lives here along with love and hope.

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@kamama94, You are such a wonderful role models for the rest of us! Yes! "It (today) is a good day to live"! Please be willing to let all who offer, help you in anyway that can make each day easier for you. Thinking of you and the many recipes you created and shared with us all. Take excellent care of our friend, Kamama94...you know, like the care you would give another, ok?

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@kamama94

About caregiving:

As a retired nurse who now receives nursing care herself, I'd like to share some thoughts about attitudes and care delivery.

It's important to remember that if we're helping someone, that someone already has difficulties so patience is a must. But so is firmness. People requiring help need to know parameters at a time when there are many unknowns. Shouldn't need to be said but empathy is a must as well but not taken to extremes; too little emotion makes for inefficiency, too much emotion can paralyze the caregiver's ability to deliver the needed care. Yet there even are times when a cavalier attitude can be helpful.

Here is a RL example: While I was in the hospital recently, a nurse brought me a medication quite awhile after a meal despite that the medication instructions are to take with food. I explained that I already had gastric and digestion problems and quoted the "take with food" instructions. The nurse replied that people took this medication without food all the time.Not the right kind of cavalier attitude. It not only dismissed physician/pharmacist instructions, it dismissed my concern and supported less-than-excellent caregiving. Fortunately I had squirrelled away a small piece of bread so took my pill while the nurse watched then followed up with the bread after she left the room. At the risk of sounding petty, I'd like to remind everyone that ill people don't always have much tolerance for brusqueness on the part of a caregiver.

Compare the above incident with one with a different nurse: Different nurse brought in the medication. I mentioned it should be taken with food. Different nurse admitted she did not know this (nurses cannot possibly know/remember EVERYthing, c'mon!) I explained the instructions were on the medication bottle I had brought with me and this was important because I already had tummy trouble.She replied cavalierly - BUT appropriately with good humor! - "We can't have that! We want you to feel better. Will crackers be ok?"

I said yes, she said she'd be right back, ducked out of the room, returned in a flash with crackers and offered applesauce or peanut butter (I declined but nice of her,) gave me my pill and the next time she brought me that med she brought crackers, too!

Even if you're not a tech or nurse or doc or pro caregiver, it's important to balance empathy with objectivity and act out of true compassion but with good humor.

Which lives here along with love and hope.

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Just read your "caregiving" post, @kamama94 and found what you said so on target!! As always, you hit the bullseye on balancing empathy with cavalier treatment and attitude of the caregiver. Thanks for what you pointed out so clearly. Most of us have been on the receiving end as patients and recognize the differences in attitudes and approaches. Also important reminders for all of us who will be caregivers in the future. Glad you felt well enough to post and sending you cyber hugs.

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@kamama94

About caregiving:

As a retired nurse who now receives nursing care herself, I'd like to share some thoughts about attitudes and care delivery.

It's important to remember that if we're helping someone, that someone already has difficulties so patience is a must. But so is firmness. People requiring help need to know parameters at a time when there are many unknowns. Shouldn't need to be said but empathy is a must as well but not taken to extremes; too little emotion makes for inefficiency, too much emotion can paralyze the caregiver's ability to deliver the needed care. Yet there even are times when a cavalier attitude can be helpful.

Here is a RL example: While I was in the hospital recently, a nurse brought me a medication quite awhile after a meal despite that the medication instructions are to take with food. I explained that I already had gastric and digestion problems and quoted the "take with food" instructions. The nurse replied that people took this medication without food all the time.Not the right kind of cavalier attitude. It not only dismissed physician/pharmacist instructions, it dismissed my concern and supported less-than-excellent caregiving. Fortunately I had squirrelled away a small piece of bread so took my pill while the nurse watched then followed up with the bread after she left the room. At the risk of sounding petty, I'd like to remind everyone that ill people don't always have much tolerance for brusqueness on the part of a caregiver.

Compare the above incident with one with a different nurse: Different nurse brought in the medication. I mentioned it should be taken with food. Different nurse admitted she did not know this (nurses cannot possibly know/remember EVERYthing, c'mon!) I explained the instructions were on the medication bottle I had brought with me and this was important because I already had tummy trouble.She replied cavalierly - BUT appropriately with good humor! - "We can't have that! We want you to feel better. Will crackers be ok?"

I said yes, she said she'd be right back, ducked out of the room, returned in a flash with crackers and offered applesauce or peanut butter (I declined but nice of her,) gave me my pill and the next time she brought me that med she brought crackers, too!

Even if you're not a tech or nurse or doc or pro caregiver, it's important to balance empathy with objectivity and act out of true compassion but with good humor.

Which lives here along with love and hope.

Jump to this post

@kamama94 I have been away since early in August and am now just catching up, plus I rarely am in kidney groups and dialysis since I have nothing to offer there, nor do I need support in that area - at least not currently.

It sounds as if you have had a setback. I am so sorry, you are such a strong presence on Connect and always very positive. I hope that things will work out for you quickly and you will be back on track.
Hugs, JK

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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.

REPLY
@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.

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@kamama94 Glad to hear you are satisfied with the clinic's doings. It's a tough spot to be in, and the patient is at the mercy of the employees. I have heard several less-than-stellar stories, and hearing yours gives me hope!

Yep, today is a good day to live.
Light and hope, strength and standing tall,
Ginger

REPLY
@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.

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@kamama94 , A good day indeed! The 1st of many!

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