Nursing home that is providing inhouse dialysis - questions about care

[jdk]

I posted some months ago before my father needed dialysis.  In january he was admitted to the hospital because he needed to go on dialysis immediately.  He has end state congestive heart failure, too.  After a week of dialysis he was moved to a nursing home that has on-site dialaysis
( his nephrologist is affiliated with this place.) 
I could rant all day about the care.... they give him a tomato on his salad, saltine crackers , say he can have a shower (which we found out is not allowed because of the port in his neck) and on and on.
They have not given us any information on his numbers and whether the dialysis is helping.  he is wheelchair bound and they are giving him OT and PT but we have no idea when he will be able to use a walker again.
They have set a discharge date for 3 weeks from now.  How can they do this without telling us how he is doing?
We want to take him home but until he can use a walker he will not be able to go to dialysis.
Please help me with the correct questions to ask the doctor that is on staff - who doesn't communicate with us or my dad.  What do we need to know to be able to assess if his condition is improving.
We would like to move him to another facility but it seems impossible to find info on which
nursing homes provide on site dialysis.
The facility he is in now is in southern florida and is supposed to be "one of the best"  i can only say, if this is the best.... I cannot imagine how very bad the worst ones are.
Thank you for any help you can give.

[okarol]

Hi jdk,
Has a nephrologist evaluated your dad's progress?
When was his last 24 hour clearance test?
I would tell them you need copies of all his recent labs (blood and urine.)
I think you need to know his creatinine, BUN phosphorus and potassium.
The lab report will show the normal ranges for all his results so you can see
what is high and low.
Is your father able to communicate? Have him ask that the information
be given to you immediately.
When he is discharged he can go to dialysis in a wheelchair. Do you know
what center would provide these services?
Many nursing homes don't do on site dialysis, but transportation is provided.
It sounds very frustrating! Hang in there and be assertive! You have every right to
gather info and help him plan his care!
Karol

[thegrammalady]

my daughter has promised to kill me before we resort to a nursing home. ask to see his file, federal government says it's yours, you have the right. one tomato on a salad isn't going to make him sicker and there isn't enough salt on soda crackers to harm him either as long as they aren't salting is food when they prepare it. Ask the doctor to explain his blood results, potassium, phosphors, pht and albumin.  my dialysis center has several people in wheelchairs. not being able to walk, shouldn't prevent your father from coming home. if you feel you need him in a facility, get on the phone, call all of them and ask how they deal with residents who need dialysis. consider a different neurologist. YOU HAVE RIGHTS, YOU HAVE OPTIONS. ask questions, everyone her has lots of answers.

[meadowlandsnj]

The facility he is in now is in southern florida and is supposed to be "one of the best"  i can only say, if this is the best.... I cannot imagine how very bad the worst ones are.
Thank you for any help you can give.

If they won't give you the info you want tell them you're going to the State of Florida Medicaid/Medicare people.  The home is no doubt making plenty of money off doing dialysis there.  Tell them you're going to call for an investigation and I think you'll get the answers you seek.   

Donna

[jdk]

Thank you all for your help.  I will tell my mother to ask for the numbers mentioned
above.  The nephrologist takes forever to return calls (still waiting).  Another question
is how do you know if dialysis is working or not?  So little information was given to
my mother.  My mother is afraid to get "too tough" with the staff because she is  afraid
they will take it out on my dad (he's 89) and all he wants is to come home.

[thegrammalady]

from the blood work the Urea Reduction Ratio tells how well blood is being cleaned by dialysis. A URR of 70-90 is normal.

[Rerun]

Your father is 90 years old.  You need to have a heart to heart with him if he is still with it enough to know.  If he is then ask him if he wants to go on dialysis.  If he does NOT then you need to listen to him.  I can't imagine living in a nursing home when I have a choice to not dialyze.  Go over your options.  ONE of which is not to go on dialysis. 

90 years old?   

[okarol]

I don't blame him - I would want to come home too.

[jbeany]

jdk, this website is very good for an organized approach to all you need to know -

http://www.kidneyschool.org/

It's a bit annoying because you actually have to answer the questions to move on to the next page, but the info is accurate, and explained at a very basic level.  Go thru the lab test sections - it will explain what labs you need to watch and why.  It's written at a 6th grade reading comprehension level, and by some REALLY chipper, overly optimistic people, but ignore that, and just print out the lab stuff.

And rerun is right - as hard as it may be, does he understand that coming home without dialysis means hospice?  Is that what he is asking for? 

 

[jdk]

Again, thank you all for your help.  He hates dialysis but he "will do it" because we have told
him it will make him better and stronger.  And, he doesn't want to leave my
mother alone.  He is on dialysis due to his heart failure which is in end stage CHF
The most frustrating part is they don't tell us anything.  My mother is supposed to see the
doctor that "come in" to check on the patients today (HA) and I have told her the things to
ask about (thank you all for that info.)
If he comes home we will get help for him, but if he can't even use a walker becuase he isn't
strong enough, it will be too much for him to get in/out of the car to go to dialysis.
Is home dialysis an option?  From what I have read, you have to go for training
and they are too old for that.  Could we hire an aide who is trained to do it? He is on hemodialysis 3x a week.
Thank you again.

[okarol]

Hi jdk,
I cannot answer the question about home dialysis but hopefully someone else will.
Most communities have transportation with vans that can transport wheelchair bound patients to dialysis.
The social worker at the dialysis center should be able to help with this, but if not call your city
managers office and ask them to refer you to the proper agency.
Karol