Lots of Questions

[sandarr]

Hello, I have a lot of questions that I am hoping to find answers to about dialysis; my mother began dialysis July 17th. She has been seeing a nephrologist for about two years and when her kidneys began shutting down her sodium level dipped extremely low.

 She is 87 years old and is still in the hospital, and this is where many of the questions I have lye, she is on a ventilator, they began weaning her off of it and during dialysis had to turn it back on. Now, the primary doctor is saying that she cannot come off of it.

They want to send her to a skilled nursing center, which is understandable instead of home, but they are talking about sending her as far as 700 miles from where she lives in Northeastern Pennsylvania.  Has anyone had to deal with this type of situation? Is there home care that we children can get that will allow her to come home, rather than be sent that distance?

Thanks,
sandarr

[billybags]

sandarr, First of all welcome to the site. I am sorry to hear about your mother. I live in England so I dont know a lot about the American way of nursing care, but you will find lots of answeres to your questions on here. 700 miles seems a long way a way. How the hell are you suppose to visit and keep in touch, there must be some where nearer. Hope you find a solution.

[Rerun]

Sandarr, it sounds like your Mother doesn't even know what is happening.  Dialysis is life support and a choice.  This site is where you get the truth.  Be kind and don't allow dialysis.  Just let her drift off and home to heaven.  What would you want?  To lay there on a ventalator suffering being kept alive?  Dialysis is a choice and you can say "no" to dialysis.

I'm so sorry, but someone needs (a doctor) needs to have this talk with you.   

[paul.karen]

I have to side with ReRun.

Then again i dont know all the other aspects of your moms health.  Is she alert able to walk well when not on the ventalator.  How is her overall health and State of mind other then the dialysis/kidney problems.

Some 87 year olds are very active and so to say seem very much alive.
While others in there upper 80's seem to be knocking on deaths door being kept alive by doctors who see money signs and machines to do what the patient likely will never do again.

So without knowing more of your moms health side it is hard to say what you should do IMO.

What does your mom say about all this?   I know it is so hard to hear some things being her child.
Wishing you the best as well as your mom.
P&K

Ps.  welcome to IHD

[looneytunes]

Hi Sandarr.  It sounds like a really tough time for you and your family and my sympathies goes out to you. 

Is your mother able to communicate with you at all regarding what she wants?  Has she expressed her wishes in any way?  Is Hospice an option (this is a question for her doctor)?

I would think there would be a closer facility for skilled nursing care than 700 miles.  You might ask to talk with the hospitals "patient advocate" as most have them. 

You and your family will be in my thoughts and prayers.

[sandarr]

I must have found the wrong message board, I was hoping for ideas to keep her from being transferred 700 miles, not a lecture on turning off a machine on someone that was watching her favorite television program when I left the hospital last night.

I have spoken with the doctors, and no turning a machine off that she is breathing over and was weaning off of until one bad day during dialysis is not a reason for us children to turn it off. The setting on the vent is 30 percent.

I should elaborate a bit, my mother and her doctor had a talk about a living will and she did not want one. Her idea, of it was if you can save a 20 year old you can save me, so we are abiding by her wishes. People in her family live well into their 90’s.

Daily life, she is mentally sound, and with help is up and out of the house twice daily (help is needed as she has Huntington’s disease and has for forty years), she does puzzles, reads the newspaper and keeps up on politics.

[silverhead]

I certainly would check out all the possibilities for home care, She would be so much more comfortable I would think. probably boils down to what the insurance will pay for. My wife has to use a concentrator to breath well and it and a hospital bed are covered by insurance. As others have said check if their is a patient advocate or social worker than can intervene and help you out.....
Tom

[paris]

Sandarr,  Sounds like your Mom is a fighter.  My Mom would have been the same way--and yours will know when enough is enough.  And she is fortunate to have a loving family to keep her active and on the go.  Sounds like she does way more than me!!   700 miles does not seem reasonable.  Is their a patient advocate in the hospital to help you navigate through this?  She needs to be where her family is so you can see her.   I am glad you joined and I hope some of our PA members can help you with the questions regarding skilled nursing centers in your area.   Keep posting and let us know what you find out. 

[Zach]

If your mom is otherwise stable, maybe you might look into home hemodialysis, such as what the Nextstage provides.
http://ihatedialysis.com/forum/index.php?board=37.0

There is a section here for home dialysis.
http://ihatedialysis.com/forum/index.php?board=25.0

This might need to be a special case, since normally the patient has to be able to take part in their care.
But if you have insurance to cover a CNA who can receive appropriate training, perhaps a dialysis center/nephrologist might approve.

[Inara]

I've worked in home health before and ALL my patients were on vents either full or part time.  From what you've told us, it sounds like she's functioning at a high enough level that she could live with family and qualify for round the clock nursing care.  I'd have a long talk with her doctor as to WHY they want to send her so far away.  Maybe they have some special rehab programs at that facility?  If they want her to go to maximize her rehab potential, I'd let her go, since it's only temporary.  No traditional nursing homes will take patients on a vent (at least around where I am!)

Keep us updated, please!  And welcome to the boards!

[pamster42000]

Here's a site that may be able to help you.

http://pittsgroup.com/hha/state.php?state=PA

If theses places can't help you maybe they will know of a place that can.

[Rerun]

I guess I don't know what a ventalator is.  Is it the thing they shove down your lungs to make them expand for you or are we mearly talking a oxygen tube in your nose?

I guess you could move her in with you and stay home to care for her or get paid help.  I hope that works out for you.

[pamster42000]

Just checking in to see how things are going for your Mom....Hopefully you have good news to report.