How Long Does a Person Have To Live if They Have Renal Failure, No Dialysis?

[jimho1]

 

My Mother-In-Law is a five year survivor of renal failure and starting and stopping dialysis.  She is a 24-year diabetic veteran and has severe sleep apnea, but refuses to use the CPAP machine prescribed to her for her sleep apnea.  The past few years her kidney doctor has said she is ok, but needs to use her CPAP machine, to prevent her renal failure.  Now she has renal failure and will be posed with the question of dialysis, yes or no.  Does anyone have any clue as to how long her life span could be if she does not do dialysis at all? 

With her rest home, they found out that even though they see health risks in artificial sweeteners, they give diabetic patients sugar in their coffee and food, as well normal levels of salt in food.  Besides her long list of meds she takes everyday, she constantly drinks lots of water, which I think is good for the kidney.  But, then I question the salty food she eats everyday.  Her rest home feels her quality of life and enjoying it is more important than how long she can live if she does not enjoy low salt food. 

 

Please let me know your thoughts, good or bad.

Thank you....

Jim
     










EDITED:  Moved from Introductions to General Discussion. 
jbeany, Moderator

[Grumpy-1]

Jim   Not sure any one know that answer.  I would guess that if she has quit producing urine, then a week or two before the fluids build up in her body to cause organs to quit functioning.  That is only my guess.  Grumpy

[MomoMcSleepy]

I guess I'd morbidly want to know how old she is, and if her life expectancy is much longer, anyway.

If one might expect her to die within the next few months-years, with a steady decrease in quality of life, then I don't know why she should be put through dialysis.  I listen to a police/fire scanner all day, and hear  a couple calls a month for the local DaVita centers, and of course I hear other calls, too, and these elderly patients have a tough time.  Their cardiovascular systems are worn out as it is (some have comorbidities involving the heart, anyway) and the rescues get called for heart attacks and blood pressure issues, etc. 

I suppose you have to think about the risks of dialysis and her overall health picture.

Now, when my dad was dying, he was on Decadron, a steroid that raises blood sugar. He was put on a diabetic diet. I was very careful about it, and went to get him yummy sugar-free treats.  My grandma and aunt still occasionally bring it up and make fun of me, saying basically that I should have let him have cake, pie, and anything else he wanted, since he was literally weeks or days from death.  I was afraid of him seizing or something, and suffering even more than he already as,  His sugar got into the 600's, it was alarming! 

I still don't know who was right.  The thought of him getting really sick because we just basically gave up on him didn't sit well with me, but I can see the other side, too.  If it won't make her sick in the short term, then why not?  I guess that's what you have to think about.  Outcomes are different depending on age.  I wouldn't feed a 30-hear-old in your MIL's condition the same way, but in her case, it might not actually do much damage or life-shortening.  Also, my dad thought if he played his cards right,he might live for years yet, and demanded we treat him as such.  It was hard to accept for him, he was a relatively young man.  We basically need to follow our loved one's wishes.

[jimho1]

She is 76.  She drinks lots of water and pees normal.

[Rerun]

All I know... is if I ever quit dialysis and want to make the wait short I'd drink lots of milk and orange juice.

Potassium will kill you fast if it builds up.  oh, and chocolate!

[AnnieB]

That tells me why my potassium is so high.....addicted to chocolate. Or was, anyway. Having to make lots of dietary changes now.

I don't know if anyone could say for sure how long she would have without dialysis. I have heard that if someone has been just gradually declining without dialysis it could take longer than if someone was on dialysis and just quit.

[MomoMcSleepy]

If she's otherwise feeling well and managing her illnesses well, then maybe they should be more careful about her diet.  76 isn't as old as it used to be, if she has a recent Amoi t of function, etc., she could have a lot of good time left.  Again, up to her.

[jbeany]

Jim,

The reality is, the docs have no idea what her real time frame could be.  It could be weeks or it could be years.  If you start going through posts on here looking for the amount of time between when our members were told "You are going to need to start dialysis."  there are some who put it off as long as a decade after being told they would need to start in 6 months.  There are also plenty who were told it would be years and ended up on it months.  Kidneys do not fail according to a prescribed schedule.

If she wants to extend the kidney function she has, she should be on a low protein, low salt diet.  The "quality of life" comment from the nursing home is partly true, and partly a cop-out as to why they buy cheaper, pre-made crap to serve their residents.  It's possible to do fabulous, tasty meals and still stick to a low salt diet - but you have to cook it from scratch, not open cans.

[jimho1]

 

Thank you jbeany!

We attended a meeting with the rest home yesterday, on what they call a "care plan meeting" every 3 months.  Per the doctors' orders, we took my Mom-In-Law to the vascular surgeon a few weeks ago and had a consultation and scheduled to have a fistula surgery next week.  My wife got very sick with the flu and could not make it in to talk with her Mom last week, to see if she wanted to pursue this via dialysis or not.  The point was to give "Mom" her choice, but an informed factual decision. 

This past weekend, my sister-In-law, who lives out of state, walked her neighborhood and came across a guy who was talking to a crowd and said he was a retired doctor and spoke against dialysis for the elderly.  My youngest brother-In-law, who goes into information overload, goes to "Mom" and tells her "I don't want you going through dialysis and having a big bulge on your arm!"  By time my wife and I got to her yesterday, she admitted she was petrified over all this and didn't want her vein popping up on her arm like a big balloon and she knows she will live another 5 years.  What?!

Everything my wife and I researched, we found very little on statistics, my wife did not fully understand the statistics.  The first line said with dialysis "78%, 1 year."  I explained to my wife, 78% (elderly) live to 1 year with dialysis.  Based on my Mom-In-Law's symptoms, she is already starting to shut down, like memory loss, itchy skin with white powder, leg cramps and such.  We still have to go with her to her kidney doctor next month (every 3 months) and get further info from him.  Her primary care doctor called her yesterday and told her she needs to do dialysis.  When my youngest brother-In-Law showed up before we left, she did not talked details, not even what her primary care doctor said on the phone, you could tell she was screening from him. 

At her request, my wife cancelled the fistula operation next week.  My youngest brother-In-Law suddenly wants to join us at the kidney doctor's visit next month on the 12th.  My wife was going through hard times as one of the daughters in wrapping her head around of her Mom dying anytime in the next few years.  If she makes it past Christmas, I will be happy, but I told my wife, it will be a long hard road from here to there.

As far as my brother-In-Law goes, he s a recovering alcoholic and is taught and raised to tell all that is on his mind to Mom.  We knew a few years ago, he will go into information overload on things and spill his feelings to his Mom.  Two years ago, when she had congestive heart failure and went into the hospital, we had a talk in the lobby.  My brother-In-Law said "I wish people would quit trying to keep Mom alive and just let her die.  I only visit daily to the rest home because I feel guilty for her struggling so bad."  I may have it wrong, but relatives I never want to let go so quickly.  On on shoe, I realize he has never had a health problem, except when he got in an accident after getting drunk (motorcycle), which lead him to AA.  But, my opinion, he is the last person that should have persuaded my Mom-In-Law, or spoke to her on the subject.  We look back and should have known NOT to tell my youngest brother-In-Law of the details of my Mom-In-Law. 

As all their In-Law, I realized I must keep my mouth shut and let my In-Law's stupidity roll out over time until she passes, but I love my Mom-In-Law.  I will be tough for my wife, be that rock, but work on keeping my mouth shut.

The first word and influence is the most lasting.

Thank you all.

If you have any further advice, please give it.  Plus, since my wife is the alternate (only in the Island of Hawaii, making her primary) Power of Attorney for my Mom-In-Law, ny thoughts or advice there, please pass on.

 

   

[jeannea]

I think that waiting til next month to see the nephrologist is a mistake. Call the office and get an urgent appt. By next month it may be too late to make an informed decision.

[chiawana]

I'm guessing that the itching is from high phosphorus, and the "powder" on her skin is uremic frost. This is severe renal failure. I agree, don't wait to see a nephrologist. She needs to get to the ER and on dialysis ASAP, however they have to do it.

[Arcticat2000]

She needs to get to the ER and on dialysis ASAP, however they have to do it.

As scary as that sounds it is the right thing to do. She will feel better after she adjusts to treatment. It's better than being the alternative.

[okarol]

She does not have to get a fistula now. They can put in the tunnel catheter in her chest and start right away. It's not forever but it is a good beginning step. Then she can decide if she feels better and wants to take the next step of having the fistula surgery.
The other concern is where the dialysis will take place. She will have to be transported from the nursing home to a nearby dialysis unit. You can visit it to prepare her, if she wants to see what it would be like. Depending on what she's prescribed, she could be going approx. 3 days a week for 3-4 hours each time.
Quality of life would be better in some ways, as dialysis could alleviate some of her symptoms. But it's also time and changes, which can be very challenging for an elderly person. Whatever she decides, it's her choice.
If you haven't seen it, there's a topic in FAQ's called " How Long Does It Take to Die Once You Quit Dialysis?" http://ihatedialysis.com/forum/index.php?topic=15216.0
Best of luck to you and your family. 

[jimho1]

 

Everyone, Thank you!  Your responses match my gut feeling all too closely.

I forgot to mention, at that "care plan meeting", a nurse was trying to reassure us that without dialysis, my Mom-In-Law could live another 5 years.  Based on research we found and symptoms she has, we seriously doubt she will live past a year.  I told my wife a few times, "I will be surprised if she lives past Christmas of this year."  The only hope I have, is her kidney doctor tells her she won't live a year without dialysis. 

Also, I do not know if it is cruel or unethical or not, but I feel, if I had some alone time with my Mom-In-Law, if she mentioned she has 5 years again to me, I might tell her the truth of what I researched and believe.  I would not want her to stress more than necessary, but cannot sit amongst a lie either.  We shall see what the doctor.  Plus, I do not want the family to tell my wife they do not want me to come around their Mom anymore.

A serious delimna.

[M3Riddler]

My Mother-In-Law is a five year survivor of renal failure and starting and stopping dialysis.  She is a 24-year diabetic veteran and has severe sleep apnea, but refuses to use the CPAP machine prescribed to her for her sleep apnea.  The past few years her kidney doctor has said she is ok, but needs to use her CPAP machine, to prevent her renal failure.  Now she has renal failure and will be posed with the question of dialysis, yes or no.  Does anyone have any clue as to how long her life span could be if she does not do dialysis at all? 

With her rest home, they found out that even though they see health risks in artificial sweeteners, they give diabetic patients sugar in their coffee and food, as well normal levels of salt in food.  Besides her long list of meds she takes everyday, she constantly drinks lots of water, which I think is good for the kidney.  But, then I question the salty food she eats everyday.  Her rest home feels her quality of life and enjoying it is more important than how long she can live if she does not enjoy low salt food. 

 

Please let me know your thoughts, good or bad.

Thank you....

Jim
     
EDITED:  Moved from Introductions to General Discussion. 
jbeany, Moderator

Jim,

We are all different.  Ther eis no set time limit on how long each stage will last. There are steps such as diets we can go on, but we all handle them differently.  She may never get to the point of needing dialysis. If she does, that does not mean its the end...  People live great lives on dialysis.    I would suggest doing as much education as you can and learn about her particular disease that may have caused her CKD.   Learn about the different types of dialysis as well before she may ever need them.  Whatever you do, dont leave it entireely up to the docs to make her decisions.  She needs to be involved as much as possible with her care, even questioning the staff if need be. We must advocate for ourselves in teh best ways possible....

///M3Riddler