1. < Kidney & Bladder
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.

Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 15, 2020
In reply to @kamama94 "Now working on new dialysis diet, which is higher protein and lower potassium than a reg..." + (show)
@kamama94

Now working on new dialysis diet, which is higher protein and lower potassium than a reg renal diet.

Neph came to see me at the clinic yesterday, answered all my questions and offered some much-needed reassurance. Also upped dialysis rate a little to shorten the time and I tolerated that just fine. She increased my Lasix and is giving me erythropoietin stim IV with dialysis so I can start making more red blood cells.

I already had talked to surgeon's nurse about post-op transfers and neph bore out the info, said after 24 hrs I could use my arms to push up and meanwhile this was one reason she was admitting me to the hospital post-op and putting me on bedrest, so I wouldn't have to try to transfer to access the bathroom, for one thing.

The only negatives to yesterday were that the treatment recliners start to hurt my back by hour 3 and I was so tired by the time I got home. Otherwise it actually was a fairly pleasant experience, no other uncomfortable side effects and lots of laughter and socialization, both with other patients and with nurses and techs.

Busy day today - nurse for bath & personal care at 8 then PT/OT for transfer strategies. Then lunch & nap, then some me time and quiet time.

Sending everyone wishes for a nice day. Love and hope live here.

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@kamama94 And this is one reason you are so valued here. You are thinking about your situation, striving to make it work for you, and thinking about all of us here in the stands cheering you on! Wonder woman ;))

Would having a pillow or some padding help you in the recliner? Maybe an eggshell type pad, I wonder? Really glad to hear your nephrologist came to see you and answered questions/concerns. It helps bolster your spirit and shows the center that you have your doctor on your side.
Ginger

REPLY
2 replies
Ellen | @helenfrances | Sep 15, 2020
In reply to @jolinda "@wickenburger I can relate a bit to this one! My mother was in ICU many years..." + (show)
@jolinda

@wickenburger
I can relate a bit to this one! My mother was in ICU many years ago fighting for her life and this nurse kept asking her those very questions, "do you , know what month/day it is, do you know where you are?". I took her aside and reminded her we are in a room with no windows, you've drugged her up and you wake her up at all hours of the day and night because it's convenient for you, it isn't a realistic test to determine someone's mental capacity. I know she was just following protocol, (much like your nurse) BUT that is what separates the good from the bad medical professionals. Some can only follow the script while others are able to take into account the person and the circumstances and adjust real time. The good ones are worth their weight in gold!
J

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What a great advocate you are!
Every mother should have a daughter like you!

REPLY
kamama94 | @kamama94 | Sep 15, 2020
In reply to @gingerw "@kamama94 And this is one reason you are so valued here. You are thinking about your..." + (show)
@gingerw

@kamama94 And this is one reason you are so valued here. You are thinking about your situation, striving to make it work for you, and thinking about all of us here in the stands cheering you on! Wonder woman ;))

Would having a pillow or some padding help you in the recliner? Maybe an eggshell type pad, I wonder? Really glad to hear your nephrologist came to see you and answered questions/concerns. It helps bolster your spirit and shows the center that you have your doctor on your side.
Ginger

Jump to this post

@gingerw, am very lucky because my neph also is the dialysis clinic director.

REPLY
kamama94 | @kamama94 | Sep 15, 2020
In reply to @gingerw "@kamama94 And this is one reason you are so valued here. You are thinking about your..." + (show)
@gingerw

@kamama94 And this is one reason you are so valued here. You are thinking about your situation, striving to make it work for you, and thinking about all of us here in the stands cheering you on! Wonder woman ;))

Would having a pillow or some padding help you in the recliner? Maybe an eggshell type pad, I wonder? Really glad to hear your nephrologist came to see you and answered questions/concerns. It helps bolster your spirit and shows the center that you have your doctor on your side.
Ginger

Jump to this post

I have spinal stenosis below some frozen vertebrae so don't bend where the recliner bends. My recliner at home is perfect, wish I could take it on the dialysis bus with me. <wink, wink>

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 16, 2020
In reply to @kamama94 "Now working on new dialysis diet, which is higher protein and lower potassium than a reg..." + (show)
@kamama94

Now working on new dialysis diet, which is higher protein and lower potassium than a reg renal diet.

Neph came to see me at the clinic yesterday, answered all my questions and offered some much-needed reassurance. Also upped dialysis rate a little to shorten the time and I tolerated that just fine. She increased my Lasix and is giving me erythropoietin stim IV with dialysis so I can start making more red blood cells.

I already had talked to surgeon's nurse about post-op transfers and neph bore out the info, said after 24 hrs I could use my arms to push up and meanwhile this was one reason she was admitting me to the hospital post-op and putting me on bedrest, so I wouldn't have to try to transfer to access the bathroom, for one thing.

The only negatives to yesterday were that the treatment recliners start to hurt my back by hour 3 and I was so tired by the time I got home. Otherwise it actually was a fairly pleasant experience, no other uncomfortable side effects and lots of laughter and socialization, both with other patients and with nurses and techs.

Busy day today - nurse for bath & personal care at 8 then PT/OT for transfer strategies. Then lunch & nap, then some me time and quiet time.

Sending everyone wishes for a nice day. Love and hope live here.

Jump to this post

@kamama94 I just love to read your posts! You make me feel that I can handle even the most difficult of health problems by acknowledging the difficulties but lifting up the positive experiences along the way!

You posted that you will be having PT/OT for transfer strategies. Will this provide you help in transferring from the wheelchair to other chairs, etc.?

REPLY
1 reply
JK | @contentandwell | Sep 16, 2020
In reply to @kamama94 "Now working on new dialysis diet, which is higher protein and lower potassium than a reg..." + (show)
@kamama94

Now working on new dialysis diet, which is higher protein and lower potassium than a reg renal diet.

Neph came to see me at the clinic yesterday, answered all my questions and offered some much-needed reassurance. Also upped dialysis rate a little to shorten the time and I tolerated that just fine. She increased my Lasix and is giving me erythropoietin stim IV with dialysis so I can start making more red blood cells.

I already had talked to surgeon's nurse about post-op transfers and neph bore out the info, said after 24 hrs I could use my arms to push up and meanwhile this was one reason she was admitting me to the hospital post-op and putting me on bedrest, so I wouldn't have to try to transfer to access the bathroom, for one thing.

The only negatives to yesterday were that the treatment recliners start to hurt my back by hour 3 and I was so tired by the time I got home. Otherwise it actually was a fairly pleasant experience, no other uncomfortable side effects and lots of laughter and socialization, both with other patients and with nurses and techs.

Busy day today - nurse for bath & personal care at 8 then PT/OT for transfer strategies. Then lunch & nap, then some me time and quiet time.

Sending everyone wishes for a nice day. Love and hope live here.

Jump to this post

@kamama94 It sounds as if things are going well, that's great. You have such a wonderful attitude that you could make them sound that way even if they weren't though! I am sure you bring joy to the other patients and the nurses.

Enjoy your "me time", we all need that.
JK

REPLY
JK | @contentandwell | Sep 16, 2020
In reply to @trishanna "Won't go into details because it's such a sad story. My Mom was brought to the..." + (show)
@trishanna

Won't go into details because it's such a sad story. My Mom was brought to the ER with a bleeding problem. Unknown to us, the hospital staff marked her as unresponsive - my Mom was hard of hearing!!! Ultimately, I went to the hospital chaplain for help because no one would listen to me. Four days after being admitted, my Mom died. Probably we had a lawsuit, but that would not have brought back my Mom. So, I advise that if your loved one is in a nursing home and is a bit deaf, attach a warning label to a toe so the ER staff will know.

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@trishanna I am so sorry for what your family has had to endure. It's terrible that perhaps she could have lived longer if the staff at the hospital had been more caring and realized that she had a hearing loss.
With great sympathy, JK

REPLY
fiesty76 | @fiesty76 | Sep 17, 2020

@hopeful33250, Teresa, I couldn't agree with you more about what an inspiration @kamama94 is to us all! Hope both of you will be finding something lovely to appreciate and enjoy in your day.

REPLY
kamama94 | @kamama94 | Sep 17, 2020
In reply to @hopeful33250 "@kamama94 I just love to read your posts! You make me feel that I can handle..." + (show)
@hopeful33250

@kamama94 I just love to read your posts! You make me feel that I can handle even the most difficult of health problems by acknowledging the difficulties but lifting up the positive experiences along the way!

You posted that you will be having PT/OT for transfer strategies. Will this provide you help in transferring from the wheelchair to other chairs, etc.?

Jump to this post

@hopeful33250, OT already has helped solve a couple of mobility problems re personal hygiene and is working on a platform for my recliner/bed. Nurse is good also, am very impressed with my hospital's home health services.

REPLY
1 reply
kamama94 | @kamama94 | Sep 17, 2020

To anyone who can help: Suddenly I'm not receiving notifications of posts by email. I don't think I turned that off, mainly because I don't know how. If someone can private message me how to get notifications of posts again, I'd appreciate it very much!

REPLY
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