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
Rosemary, Volunteer Mentor | @rosemarya | Nov 14, 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

I think that today has been your dialysis day. You are most likely asleep by this time. I hope that tomorrow will be a comfortable day for you, as you get back to your treatment schedule.
I am learning that the world is not a wheelchair friendly place! I believe that there are special blessings those dear friends who are coming to your aid!
Love and hugs

REPLY
lioness | @lioness | Nov 14, 2020

I found one med that a KIdney Dialysis patient shouldnt take only at 2.5 mg. that is BVaclovin. My friend here had tremors confusion and jumpy legs,arm. The neurologist found that she had been perscribed Baclovin 10 mg. this is what caused her to be confused . I ended up calling 911 for her . With 2 dialysis treatments she is much better . So those on dialysis don't take Baclovin for muscle pain without your neurologist approval.

REPLY
kamama94 | @kamama94 | Nov 15, 2020

More bad news - the access graft for dialysis also has failed so will have to contiinue to use the risky permacath awhile longer. Won't know until first of next week if the 2nd failed arm access graft can be repaired (yet another surgical procedure!) or if a separate surgery attempting a third access will be planned.
I am beyond frustrated.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 15, 2020
In reply to @kamama94 "More bad news - the access graft for dialysis also has failed so will have to..." + (show)
@kamama94

More bad news - the access graft for dialysis also has failed so will have to contiinue to use the risky permacath awhile longer. Won't know until first of next week if the 2nd failed arm access graft can be repaired (yet another surgical procedure!) or if a separate surgery attempting a third access will be planned.
I am beyond frustrated.

Jump to this post

I'm so sorry to hear that, @kamama94. I can understand your frustration!
Will you send an update when you find out if the 2nd failed arm access graft can be repaired?

REPLY
1 reply
kamama94 | @kamama94 | Nov 15, 2020
In reply to @hopeful33250 "I'm so sorry to hear that, @kamama94. I can understand your frustration! Will you send an..." + (show)
@hopeful33250

I'm so sorry to hear that, @kamama94. I can understand your frustration!
Will you send an update when you find out if the 2nd failed arm access graft can be repaired?

Jump to this post

@hopeful33250, fear not, I will continue to post celebratory or whiny info, whatever transpires. My way of venting. . .

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 15, 2020
In reply to @kamama94 "More bad news - the access graft for dialysis also has failed so will have to..." + (show)
@kamama94

More bad news - the access graft for dialysis also has failed so will have to contiinue to use the risky permacath awhile longer. Won't know until first of next week if the 2nd failed arm access graft can be repaired (yet another surgical procedure!) or if a separate surgery attempting a third access will be planned.
I am beyond frustrated.

Jump to this post

@kamama94 Are they unable to do a fistula rather than graft? Good they have the permacath to access for now. You will be held in close circle.
Yesterday I was near the empty lots behind us, and blessed to see a mated pair of bald eagles come into a small stand of trees. They chattered between themselves. I am hoping they were talking about setting up housekeeping near us.
Ginger

REPLY
2 replies
kamama94 | @kamama94 | Nov 15, 2020
In reply to @gingerw "@kamama94 Are they unable to do a fistula rather than graft? Good they have the permacath..." + (show)
@gingerw

@kamama94 Are they unable to do a fistula rather than graft? Good they have the permacath to access for now. You will be held in close circle.
Yesterday I was near the empty lots behind us, and blessed to see a mated pair of bald eagles come into a small stand of trees. They chattered between themselves. I am hoping they were talking about setting up housekeeping near us.
Ginger

Jump to this post

@gingerw, they did the fistula first and it failed so then they had to do the graft since my vasculature is so crappy. Now the graft has failed. Thanks for holding me in the circle. WTG, Grandmother and Grandfather Eagle!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 15, 2020
In reply to @gingerw "@kamama94 Are they unable to do a fistula rather than graft? Good they have the permacath..." + (show)
@gingerw

@kamama94 Are they unable to do a fistula rather than graft? Good they have the permacath to access for now. You will be held in close circle.
Yesterday I was near the empty lots behind us, and blessed to see a mated pair of bald eagles come into a small stand of trees. They chattered between themselves. I am hoping they were talking about setting up housekeeping near us.
Ginger

Jump to this post

I'd love to see a picture of the bald eagles if they set up housekeeping nearby, @gingerw!

REPLY
1 reply
fiesty76 | @fiesty76 | Nov 16, 2020
In reply to @kamama94 "@hopeful33250, fear not, I will continue to post celebratory or whiny info, whatever transpires. My way..." + (show)
@kamama94

@hopeful33250, fear not, I will continue to post celebratory or whiny info, whatever transpires. My way of venting. . .

Jump to this post

@kamama94, Either way, we will be wanting to hear what transpires!!! Keeping you strong in thought and prayers.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 16, 2020
In reply to @kamama94 "@hopeful33250, fear not, I will continue to post celebratory or whiny info, whatever transpires. My way..." + (show)
@kamama94

@hopeful33250, fear not, I will continue to post celebratory or whiny info, whatever transpires. My way of venting. . .

Jump to this post

@kamama94 Your venting, whining or celebrations are all perfectly acceptable here on Connect. I personally value your presence in every post I read!

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