1. < Kidney & Bladder
Mentor

Dialysis - Stories and Questions

Posted by Ginger, Volunteer Mentor @gingerw, Feb 16, 2023

At some point, almost all chronic kidney disease patients will hear "dialysis". Sometimes it is a welcomed treatment, often it strikes fear into our very core. So many questions, so many things to consider. For many of us, it is another treatment option, and a step towards transplant. For others, dialysis is the endgame.

Let's share our experiences, let's ask those hard questions. There are generalities, but we each have our own story. Let's learn and support each other!
Ginger

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 9 11:31am
In reply to @bradford1234 "hi look up kidney coach very solid program well research good supplements also new out renal..." + (show)
@bradford1234

hi look up kidney coach very solid program well research good supplements also new out renal awakening drops fdr approve take care god bless

Jump to this post

@bradford1234 Welcome to Mayo Clinic Connect!

What is your experience with kidney coach? Where are you at in your CKD journey?
Ginger

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 20 9:49am

Are you struggling with keeping your albumin levels up? You're not alone! Here is a Msyo Clinic article that appeared in my Facebook feed this morning. A lot of great information to read and digest.
https://mayocl.in/3NwdDoQ
Ginger

REPLY
christinebarnett72 | @christinebarnett72 | Nov 6 12:07pm
In reply to @gingerw "From Mayo Clinic's website, here is information on hemodialysis, which uses our blood to clean the..." + (show)
@gingerw

From Mayo Clinic's website, here is information on hemodialysis, which uses our blood to clean the wastes out of our bodies that our failing kidneys cannot do: https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824

The other type of dialysis is peritoneal dialysis, where a catheter is surgically inserted into our abdomen, and the peritoneal cavity is used to transfer toxins out: https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725

And here is my story: I have been on peritoneal dialysis since September 2022, and do it manually, without the use of a machine to fill and drain fluids. I live about 40 miles from the closest dialysis clinic if I had to choose hemodialysis. I personally find the peritoneal dialysis to be easier on my body overall, and yes, it is done 7 days a week. "Like having a part time job" as a friend tells me. The reason for my kidney disease is a rare autoimmune condition. I am also a blood cancer patient, and for this reason I cannot be considered for a transplant.

Has it been easy to get in to this routine? I won't lie and tell you, "yes, piece of cake". But that said, it is not a death sentence. Yes, i had to make some accommodations, but it is a challenge I accepted. As a home dialysis patient, I make decisions daily on when my session will be, if I need to change the strength of my dialysate solution, add heparin, etc., all while handling all the fluids and supplies myself, hooking up to the unit myself and having total authority on doing it all. My PD nurse is but a phone call away if I need her. For me, having my blood cleaned everyday means my energy stays more even, and I have more flexibility with my fluid intake [always a major concern for us kidney patients, right!?] Diet is still a major concern, and good protein is critical.

Please feel free to ask me any questions, or to relate your own experience as a fellow patient or family member or spouse of a dialysis patient.
Ginger

Jump to this post

When did u start dialysis and what are signs of a crisis. And... Is it too late to get a new doctor at stage 5. 12percent kidney function.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 7 5:37pm
In reply to @christinebarnett72 "When did u start dialysis and what are signs of a crisis. And... Is it too..." + (show)
@christinebarnett72

When did u start dialysis and what are signs of a crisis. And... Is it too late to get a new doctor at stage 5. 12percent kidney function.

Jump to this post

Hi @christinebarnett72 I started dialysis Sept 2022.

The biggest crisis to content with, as a peritoneal dialysis patient, is cloudy fluid in your drain bag. This can indicate an infection or peritonitis, which needs immediate remedies. Most patients live within a decent distance to get to an emergency department. I do not, so I keep injectable antibiotics here at home.

As to your question about being too late to change doctors, no, it is never too late. Be sure why you need/want the change, and be prepared to answer those questions. What are you experiencing that lead you to want to change doctors?
Ginger

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