I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Kev00 on March 06, 2018, 03:40:19 AM

Title: Palliative care
Post by: Kev00 on March 06, 2018, 03:40:19 AM
I was suggested by my doctor to consider palliative care. I'm waiting for a kidney transplant, but my condition worsens each day. I wanted to ask if anyone of you decided for a palliative care in Ohio. I checked my options and I'm considering these two: Cleveland Clinic Hospice (https://www.datastical.com/medical/hospice/361554/) and Fostoria Homecare And Hospice (https://www.datastical.com/medical/hospice/361638/). If you have any information about these centers, I would appreciate your help.
Title: Re: Palliative care
Post by: kristina on March 06, 2018, 06:35:07 AM
Hello Kev and welcome to IHD,
Unfortunately I can't answer your Question as I am from writing from "over the sea", England, but I cannot understand why your doctor asks you to consider palliative care?
There are so many ways to survive on dialysis and with certain liquid restrictions and a sensible diet, it is honestly not too bad.
I send you my kind regards and best wishes from Kristina. :grouphug;
Title: Re: Palliative care
Post by: Charlie B53 on March 06, 2018, 07:23:26 AM

Hi Kevin,

In your intro thread you stated that you started Dialysis in April.  So you have been doing Dialysis for almost a year already.  Are you having some serious problems with it so much that you are seriously considering giving up?

Diet and fluid control are critical.  Forcing yourself to learn how to manage is essential to doing well.  Large fluid take offs are the worst part for me.  This causes me to be extra careful with fluids.

Let us know what's going on and see if we can suggest methods to help.

Take Care,

Charlie B53
Title: Re: Palliative care
Post by: Rerun on March 06, 2018, 08:15:16 AM
I've been on Palliative care for about a year.  I just wanted the path mowed to Hospice so if I needed them they already had my paperwork and knew my situation so I don't have to struggle with that  when I'm going through God knows what. 

They call me every 3 months to see how I'm doing and get me support and kind words.
Title: Re: Palliative care
Post by: cassandra on March 06, 2018, 03:46:12 PM
Welcome to the site Kev


   :welcomesign;


Take care, Cas
Title: Re: Palliative care
Post by: kickingandscreaming on March 06, 2018, 04:48:02 PM
Do you want to die?  I have no experience with palliative care for ESRD, but I do think it is intended for those who want to die rather than have treatment.  Dialysis is not a cure.  It "only" preserves the life you have.  I'm actually not sure why dialysis isn't considered to be palliative itself since it doesn't fix the situation, just prolongs your life while you: 1) wait for a TX, 2) wait for a bionic kidney, or 3) wait until you die from something else.  Back before I started dialysis, I would have welcomed my nephrologist suggesting palliatve.  But she didn't and I am doing fairly well on PD.  With PD there are NO restrictions on diet or fluids, so it is much easier to live with.  And it's easier on the body.
Title: Re: Palliative care
Post by: Thesunwillshinetomorrow on March 06, 2018, 05:30:27 PM
Rerun you kindof confirmed what I was already thinking. Palliative care and Hospice are two different forms of care that get confused.

Google definition says:
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, ...

Anyway...my little guy was once referred towards this care and the Doctor explained it to me. He said, "I need to explain this to you before I tell you where I would like to refer you.