Age 82 and eGFR of 9 - options?

Posted by ckdcaregiver @ckdcaregiver, Jun 10 7:17am

Hello, My mom is age 82 and her latest eGFR dropped from 11 to 9. She has only recently started seeing a kidney specialist. He doesn’t seem very optimistic about dialysis at her age. My mom is a fighter and doesn’t want to give up. Any thoughts from others who have been in a similar situation? Thanks

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

@gingerw

@ckdcaregiver I have been reading your posts and the helpful comments/responses by several fellow members.

First, welcome to Mayo Clinic Connect. I am glad you feel comfortable sharing the dilemma your mother is facing.

If this was my situation, I would ask for a "team meeting". That is, your mother, her doctors and specialists, and you all together to discuss the best options. She has particular circumstances, being chair-bound, with additional health concerns. Making sure her team understands her preferences, and listening to their feedback, may go a long way to making decisions for her care. I am so surprised to hear she does not have a nephrologist on board. Being realistic and understanding the nuts-and-bolts of the situation is critical, in my opinion. Without some type of immediate intervention, if her kidneys continue to fail, her life expectancy becomes short. Her organs will begin to be compromised past a point where they can be stabilized. It is my thought that time is of the essence.
Ginger

Jump to this post

I am so grateful for all the comments I have received. Thank You All!

REPLY
@ckdcaregiver

Also thoughts on home dialysis if arm veins are not in good shape?

Jump to this post

You need to take you mother to a Nephrologist ASAP.
That's the best advice I can give. I hover on the cusp of stage 3 and 4 and consider myself extremely lucky to live close to Mayo in Arizona. You might want to explore Peritoneal Dialysis which is done at home and does not use the veins in your arm,

REPLY
@ckdcaregiver

Hi Ginger. Sorry if this is a dumb question. How do I go about getting a team meeting? Her oncologist is with MSK while her kidney specialist that we have seen only twice is with Cornell. She was hospitalized with high potassium at NYU and have seen a specialist there once a few weeks ago. I’m so confused and scared. I want to ensure she has the best opportunity to extend her time BUT I don’t know how to best help her. I feel as if I’m going in circles - hamster in a ball. This is the first time I’ve reached out in a support group - I’m so lost. Thank You.

Jump to this post

@ckdcaregiver I too want to add my welcome to you. @gingerw is on to a very great idea (team meeting). Unfortunately the players involved come from several facilities. Is there a social worker, patient care coordinator or some other titled professional at the facility where your mother is currently? This would be the person who could potentially arrange such a meeting (because they coordinate things on behalf of the patient and family). Most facilities have such a position and that person is responsible for setting up this type of meeting, review, care conference …etc. I used to do that in various facilities when I had various titles and wore various hats. It can be tedious getting the hang of the particular lingo used but make calls, ask questions. Sometimes the squeaky wheel does get the oil. My thoughts and prayers are with you and your mom as you negotiate on her behalf.

REPLY
@cehunt57

@ckdcaregiver I too want to add my welcome to you. @gingerw is on to a very great idea (team meeting). Unfortunately the players involved come from several facilities. Is there a social worker, patient care coordinator or some other titled professional at the facility where your mother is currently? This would be the person who could potentially arrange such a meeting (because they coordinate things on behalf of the patient and family). Most facilities have such a position and that person is responsible for setting up this type of meeting, review, care conference …etc. I used to do that in various facilities when I had various titles and wore various hats. It can be tedious getting the hang of the particular lingo used but make calls, ask questions. Sometimes the squeaky wheel does get the oil. My thoughts and prayers are with you and your mom as you negotiate on her behalf.

Jump to this post

I asked to meet with the social worker at Cornell. Hopefully she can provide some guidance. My mom is at stage five. I want her to have every opportunity. She is a fighter and loves life.

REPLY
@goldwingmine

You need to take you mother to a Nephrologist ASAP.
That's the best advice I can give. I hover on the cusp of stage 3 and 4 and consider myself extremely lucky to live close to Mayo in Arizona. You might want to explore Peritoneal Dialysis which is done at home and does not use the veins in your arm,

Jump to this post

We were told the fastest way to see a nephrologist is by going to the ER BUT she wasn’t seen by any when she was hospitalized in April for high potassium and her eGFR was below 15. We have seen two Nephrologists in the past weeks. We are trying to get a consultation with a vascular surgeon to evaluate mom for home dialysis. She seems very much herself except for being a bit more tired.

REPLY
@ckdcaregiver

Hi Ginger. Sorry if this is a dumb question. How do I go about getting a team meeting? Her oncologist is with MSK while her kidney specialist that we have seen only twice is with Cornell. She was hospitalized with high potassium at NYU and have seen a specialist there once a few weeks ago. I’m so confused and scared. I want to ensure she has the best opportunity to extend her time BUT I don’t know how to best help her. I feel as if I’m going in circles - hamster in a ball. This is the first time I’ve reached out in a support group - I’m so lost. Thank You.

Jump to this post

@ckdcaregiver See @cehunt's response, getting in touch with a hospitalist, or social worker. They might be called a patient advocate. Or case manager. Be adamant but be proactive. It's not easy to do, and I get that.
Ginger

REPLY
@gingerw

@ckdcaregiver See @cehunt's response, getting in touch with a hospitalist, or social worker. They might be called a patient advocate. Or case manager. Be adamant but be proactive. It's not easy to do, and I get that.
Ginger

Jump to this post

Hi! I do intend to continue to advocate for my mom. Role reversal - she would have done the same for any of her kids and grandkids! Thank You!

REPLY
@ckdcaregiver

Hi! I do intend to continue to advocate for my mom. Role reversal - she would have done the same for any of her kids and grandkids! Thank You!

Jump to this post

Just want to say that my mother went on hospice 3 times. The services and care were so good that she "graduated" twice. Using hospice doesn't always mean imminent death. It can be a free way to get certain care (aide, nurse, chaplain, social worker, doctor, meds). You cannot get treatment for your hospice diagnosis but you can continue treatments for anything else.

Around here Palliative Care is separate and was also helpful, with no implication of stopping treatments or "giving up."

REPLY
@windyshores

Just want to say that my mother went on hospice 3 times. The services and care were so good that she "graduated" twice. Using hospice doesn't always mean imminent death. It can be a free way to get certain care (aide, nurse, chaplain, social worker, doctor, meds). You cannot get treatment for your hospice diagnosis but you can continue treatments for anything else.

Around here Palliative Care is separate and was also helpful, with no implication of stopping treatments or "giving up."

Jump to this post

Hi! Did your mom have at home hospice or at a facility? My mom had stayed at a rehab/nursing home in 2017 after she had her brain bisopy and bleed too much (lost mobility on left side similar to stroke). We looked at several places before selecting the facility and she/we were not happy with the care unfortunately and as soon as possible she went home. Glad it went well for your mom!
How does one improve without treatment?
Thanks

REPLY
@ckdcaregiver

Hi! Did your mom have at home hospice or at a facility? My mom had stayed at a rehab/nursing home in 2017 after she had her brain bisopy and bleed too much (lost mobility on left side similar to stroke). We looked at several places before selecting the facility and she/we were not happy with the care unfortunately and as soon as possible she went home. Glad it went well for your mom!
How does one improve without treatment?
Thanks

Jump to this post

She had hospice at home (assisted living with me there daily) until the last 3 days of her life, when she went into a hospice facility.

The improvement was a bit of a mystery! Nursing attention, aide help, medications provided that weren't usually available, and I had someone to discuss decisions with.

REPLY
Please sign in or register to post a reply.