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
Teresa, Volunteer Mentor | @hopeful33250 | Nov 10, 2020
In reply to @kamama94 "Rcipe update: Dialysis cllinic staff delighted to get my recipe collections and look forward to dialysis..." + (show)
@kamama94

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!

Jump to this post

Wishing you a good day today, @kamama94! I always enjoy your posts, they give me inspiration.

REPLY
Lagrange 5 | @lagrange5 | Nov 10, 2020
In reply to @kamama94 "Rcipe update: Dialysis cllinic staff delighted to get my recipe collections and look forward to dialysis..." + (show)
@kamama94

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!

Jump to this post

Thanks for reaching out. Great to hear from you this morning!

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 10, 2020
In reply to @kamama94 "Rcipe update: Dialysis cllinic staff delighted to get my recipe collections and look forward to dialysis..." + (show)
@kamama94

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!

Jump to this post

@kamama94 Good to hear from you! Getting used to what is now the new normal can be quite an undertaking, right? The green pets were happy, no doubt, to be fed. I hope you gather more energy as the time goes on. Coming in to dark moon now, does that affect you?
Ginger

REPLY
1 reply
kamama94 | @kamama94 | Nov 10, 2020
In reply to @gingerw "@kamama94 Good to hear from you! Getting used to what is now the new normal can..." + (show)
@gingerw

@kamama94 Good to hear from you! Getting used to what is now the new normal can be quite an undertaking, right? The green pets were happy, no doubt, to be fed. I hope you gather more energy as the time goes on. Coming in to dark moon now, does that affect you?
Ginger

Jump to this post

@gingerw, LOL, the "new normal" seems to change every other day. Am trying to find a pattern to the days after dialysis when I feel awful and the days after dialysis (like today) that I feel quite well and get a lot done.. The green pets tanked me by waving their leaves and wiggling their stems at me. (True story! They actually do move toward me sometimes.) And, yes, the moon phases do affect me. Our traditiional ceremonies usually cooiincide with the new moon and I discovered awhile back my own body rhtym is similar to the ceremonial cycle. Go figger, LOL.

REPLY
kamama94 | @kamama94 | Nov 13, 2020

COVID is so bad here now city transit is shut down until next week! Which means no dialysis for me today after all. I missed yesterday's regularly scheduled session due to JeffTran being closed for Veteran's Day and today couldn't do a make-up session because of HandiWheels closing down at noon.
Poor transit peoople! Many are my friends. Please be safe and get well!

Have had to scramble to find transportation tomorrow before uremia starts to rear its ugly head.

In a twist of fate, other grandmother/other great-grandmother (my great-grandson's other great-grand) will be taking me to dialysis tomorrow and Monday-so grateful to Ilona! Hope she'll accept gas money.

So far just now beginning to feel a little "off" this 3rd day since dialysis but nothing serious yet.

For clinic dialysis patients, transportation truly is a matter of life or death!

Phew!

REPLY
fiesty76 | @fiesty76 | Nov 13, 2020

@kamama94, Hate to hear about the city transit shutdown but glad you have someone who can take you for the next dialysis tomorrow. Take it easy, friend.

REPLY
kamama94 | @kamama94 | Nov 13, 2020

IMPORTANT ANOUNCEMENT ABOUT PHOSPHORUS! Although the law does not require phosphorus amounts to be listed on food labels, many manufacturers do list a per centage of the recommended daily value. In the past the daily phosphorus intake recommendation has been 1000 mg for adults, especially senior adults and 700 for CKD patients. In 2021 the RDA will change to 1250 mg recommended daily. On food labels indicating a per centage, find the percent in mg of the new recommended value of 1250 even if you have CKD as that will give a more accurate phosphorus amount.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 13, 2020
In reply to @kamama94 "IMPORTANT ANOUNCEMENT ABOUT PHOSPHORUS! Although the law does not require phosphorus amounts to be listed on..." + (show)
@kamama94

IMPORTANT ANOUNCEMENT ABOUT PHOSPHORUS! Although the law does not require phosphorus amounts to be listed on food labels, many manufacturers do list a per centage of the recommended daily value. In the past the daily phosphorus intake recommendation has been 1000 mg for adults, especially senior adults and 700 for CKD patients. In 2021 the RDA will change to 1250 mg recommended daily. On food labels indicating a per centage, find the percent in mg of the new recommended value of 1250 even if you have CKD as that will give a more accurate phosphorus amount.

Jump to this post

@kamama94 thank you for this information! I had no idea. On the topic of Transportation, is there any kind of service available to you on an emergency basis? Have you contacted your city to see if they have a solution for those who depend on transportation for life-saving services? It seems unconscionable for them to do that!

Blessings to the other great-grandmother who will help you out with transportation. She has my blessings and appreciation for stepping up to the plate.
Ginger

REPLY
1 reply
kamama94 | @kamama94 | Nov 13, 2020
In reply to @gingerw "@kamama94 thank you for this information! I had no idea. On the topic of Transportation, is..." + (show)
@gingerw

@kamama94 thank you for this information! I had no idea. On the topic of Transportation, is there any kind of service available to you on an emergency basis? Have you contacted your city to see if they have a solution for those who depend on transportation for life-saving services? It seems unconscionable for them to do that!

Blessings to the other great-grandmother who will help you out with transportation. She has my blessings and appreciation for stepping up to the plate.
Ginger

Jump to this post

@gingerw, the city did not mandate masks for city employees so this mistake caught up with the city's transit drivers. And if that sounds pissy of me, it is.

Unfortunately, the city has no back-up system for wheelchairs. However, the local (private) cab company would have given me a discount if my great-grandma friend hadn't been able to drive me.

It's a big deal, too. My power chair will not fit in a standard vehicle so my neighbor and friend will accompany me to the car, help me get in, then take my power chair back in to my apartment.

On the way I'll need to call the dialysis clinic to tell them I'm a few minutes out so one of the nurses can meet me with their manual wheelchair to get me into the clinic.

The process reverses when I'm finished - I'll call ggma friend to tell her I'm done, clinic staff will wheel me to her car and help me get in, then I'll call neighbor/friend to meet us in my apt driveway with my power chair so I can get home and to bed.

It's pretty complicated and I almost forgot to be grateful for dialysis in the first place, emphasis on almost.

Because today's a good day to live!

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 13, 2020
In reply to @kamama94 "@gingerw, the city did not mandate masks for city employees so this mistake caught up with..." + (show)
@kamama94

@gingerw, the city did not mandate masks for city employees so this mistake caught up with the city's transit drivers. And if that sounds pissy of me, it is.

Unfortunately, the city has no back-up system for wheelchairs. However, the local (private) cab company would have given me a discount if my great-grandma friend hadn't been able to drive me.

It's a big deal, too. My power chair will not fit in a standard vehicle so my neighbor and friend will accompany me to the car, help me get in, then take my power chair back in to my apartment.

On the way I'll need to call the dialysis clinic to tell them I'm a few minutes out so one of the nurses can meet me with their manual wheelchair to get me into the clinic.

The process reverses when I'm finished - I'll call ggma friend to tell her I'm done, clinic staff will wheel me to her car and help me get in, then I'll call neighbor/friend to meet us in my apt driveway with my power chair so I can get home and to bed.

It's pretty complicated and I almost forgot to be grateful for dialysis in the first place, emphasis on almost.

Because today's a good day to live!

Jump to this post

@kamama94 You have the right to sound ticked off. I am, too! Too bad the city can't be forced to rectify the situation they caused.

Stay warm, stay dry, stay happy with today,
Ginger

REPLY
View MoreView Less
Please sign in or register to post a reply.