How Long Does It Take to Die Once You Quit Dialysis?

[Meinuk]

Wow, this post brought back a lot of memories for me.  Let me start with a great resource: 

The Kidney End of Life Coalition: http://www.kidneyeol.org/hospice.htm

Now for my experience. 

My mother had always been sick.  Not much energy, some days she was puffy, other days she wasn't.  She threw up so often that she kept a pan by her bed.  It was my job to sit next to her and rub her back while she threw up.

By the age of 9, I could take a BP like a pro. The kids at school were all confused when they wanted to play doctor in the woods and I reached for their arms. In my world, Doctors reached for the arm first. My oldest sister gave me a microscope for my 13th Birthday.  The first slide I prepared was of a piece of skin peeled from the ulcer on my mother's right leg. It was cool to look at under the microscope.  My mother had been as a nurse, so she encouraged me to be medically inquisitive.

One night, as she was in the bath, she could not move her legs.  We were alone in the house. I ran and called a neighbor, and they in turn called the ambulance.  I draped her with a towel as our neighbors carried her to her bed.  The minute that she lay down, the blood clot moved and suddenly she was no longer breathing. CPR saved her life that night.  She was brought to the hospital. She joked that the nasal cannula was pointless, and she was better oxygenated when they opened the windows to the ambulance.

I came to view hospitals as my second home.  I knew the staff by first name.  When it was my turn to wheel my mother in her wheelchair, my driving abilities scared her, and she thought that she would be propelled through the plate glass window.  It was early in 1979, and she was discharged to home with words like, "tragic", "so sad" and "here's a 'scrip for morphine".

My mother's bedside table was like a pharmacy.  She had a pill for everything.  But when she was really in pain, out came the little leather kit with the glass tubes and needles.  That was how I learned to draw up meds. I was good at it.  I knew that Nitroglycerin was to be kept in the fridge (although I did try to blow up a rock with one of her pills once - it didn't work)

I had an amazing 13th Birthday Slumber Party.  It was Memorial Day Weekend, and all my friends came to spend the night. By then, my mother was in bed most of the time.  I learned to check for pitted edema, and I had fun poking her ankle and seeing the indent that stays when you legs are so swollen. Her wounds wept with a clear liquid with a yellowish tint. I thought that was gross and I asked her if they were infected - she said no, it was just that her kidneys we no longer taking any fluid from her body.

My sister Julie graduated from High school the second week in June.  I heard people saying things like "Alice is just staying alive to see Julie graduate from High School." Three days later, I stole my sister's bathing suit and went to the lake to go swimming.  Before I left, my mother was laying on her bed, and she asked me to run and get her a fan from upstairs.  I stepped out of the room, then popped my head in to lie and say "I couldn't find it.  Bye!" and with that, I ran out of the house to go swimming.

We heard an ambulance in the distance as we got to the lake.  I went swimming anyway.  Pretty soon, Helen Martin came to pick me up, and said "Anna has to go home" when we were a couple of miles from the house, I said "My mother's dead, isn't she."  Helen didn't know what to say.

I got home to cars in the driveway.  I ran to her room, and saw that the bed had been stripped to the mattress.  I was furious.  From what I remember, she was pleased that her final ambulance ride was on a newly paved road, and she commented to the EMT's "It is about time."  Her final words at EMMC were "Hi Doc." (her beloved nephrologist was there to meet her as she was taken out of the ambulance).  Then she died.

Aside from being angry that people had stripped her room bare, I saw a note that she made on her bedside table, in pen, noting the time of her last medication.  1pm on June 16th.

So, to me, that is how long it takes to die with no dialysis. It isn't measured in days or weeks, it is measured in memories.  For me, you live, until you die.  Everything in between is simply living.

And if you were to read her medical chart? ESRD in May 1978 with severe complications due to ADPKD. Not eligible for transplant and not a candidate for dialysis due to multiple co morbidities. Cause of death: ESRD secondary to PKD.

A.A.R.B. July 3, 1933 - June 16th 1979

[okarol]

  Meinuk 

[tyefly]

WOW...   Meinuk... that was beautiful.....  really    I am very touch.....  and its hard for me to say that....Death is very scary.....  I too watch my mother die in 2005...but not from CKD   but from cancer.....

   Now that I have CKD... I often wonder what it will be like to die..  Your post reminds me of life.... and I thank you for that...

         You sound like a wonderful women  and  your mother would be proud of you ......Thx again   kathy

[galvo]

A sad, yet beautiful, story, Meinuk!

[monrein]

    and thank you Anna.  My Mum died from advanced melanoma at home after being in bed for 3 months.  She was 46.  We took turns nursing her.

[WishIKnew]

If there was anyway I could help my son (13 yrs. old) and my husband understand, I would stop dialysis today and just be done!  I'm just so sad.  Not even a shadow of the whole person I was before my health (hearing and kidneys) fell apart.   Life right now just seems so pointless.  Groundhog Day - same things over and over.  Get up, get son to school, take meds, hang out on the couch all day, take a shower and do dishes and some laundry, pick up son from school, husband comes home from work, make dinner, sit on couch and watch stupid TV, walk the dog, set up my machine, go to bed.  Next day do it all over again.  For three and a half years now....  I don't want my husband and my son to have to deal with my death, but I'd love to be gone.....

[Meinuk]

  everyone.  (And thanks for ignoring the typos)

This is what I have done for advanced planning in dealing with my family and loved ones. Keep in mind that these are all extended family members.  My disease is genetic, and I chose NOT to have children, but the kids that I am writing about consider me their "Other Mother" and I have amazing friends who are willing and generous enough to share the love of their family. I like to say that they are adopted. It is NOT the same as having a child of your own, but it is still pretty intense, and honestly, all I have.

We talk about me dying.  I joke about haunting certain teenagers.  I am very frank about me currently living on borrowed time. But I am also living as if my life were a daily "Make a Wish" experience. Hence going to Disney for the first time ever in March!

When I started dialysis, I made my arrangements.  I appointed my best friend my "Death Coordinator" and she and I split a bottle of wine and discussed my will, my thoughts on what to do when I die, and what is where.  I talk to the kids about K being my "Death Coordinator".  (everyone says that she needs a job! - It'll be interesting on a resume!)

The kids were all involved in what would happen with my body.  And because of some input, I had to make changes.  (Instead of scattering all of me in various spots around the world, Robert gets to keep some.)

Funerals are for the living.  I don't want one, and I really don't care what they do.  As long as they know that I am thinking about them and their future, and they have the knowledge that I care now, and that won't go away after I die. My advanced directives are in place, and updated yearly. I've just made it a routine.

No one is ever prepared for someone that they love dying.  It hurts and there is an emptiness.  BUT, when I was 13, my overwhealming reaction to my mother dying was relief.  Her suffering was over.  I was sad for my sister who cried all night.  I was scared for myself because I thought that her sadness would bring our mother back in ghost form, and she was so sick, I just wanted her to be at peace. Children have strange thoughts, and you just can't predict them.

It is a matter of nature that we outlive our parents.  It isn't easy, but it is something that just is.

Wish, my advice would be to get the best possible health care for yourself, see if you have depression on top of CKD.  Don't give up until you have exhausted all possibilities.  Vent when you need to , but also understand that stopping dialysis is a process.  Not something that you should wake up one day and decide to do. If it is a sudden, unexplored feeling, my first thought would be depression.  There are pills for that. Death should never be an RX for depression, and sometimes, we get so depressed, we don't see the difference. That is when it is time to seek outside help.

Talk to your family when you/they are up to it.  Put things in writing as needed.  And just love them.  They will remember the love.  Really, I speak from experience.  My mother was both the best and worst influence on my life.  In her own way, she taught me to cope with "our" disease in the best possible way.  And well, in hindsite, my childhood was not optimal, BUT, we all play the hand that we have been dealt, and now, at 44, I wouldn't have done it any other way. My childhood experiences made me who I am today, warts and all.  I'm ok with that.

[molldw]

A week, maybe 2 if you really watch your fluid intake and watch your potassium levels.  Those are what will kill you.  Oviously the people who made it longer must have had some sort of renal function.  But for those of us with NO kidneys whatsoever, 1-2 weeks tops.

[chook]

Meinuk, I can relate to the feeling of relief you had when your mother died. My Dad who had PKD died from septicemia when I was 23 and everyone kept telling me how brave I was. Dad used to say he was 'sick and tired of being sick and tired' and our Mum was his carer and that was taking such a toll on her. So I too felt relief when my Dad died. I am reasonably healthy except for ESRD but I too have made plans, to make things easier for my family. Sounds morbid but I just want to make everything a bit easier for them should I up and die unexpectedly.

[Sax-O-Trix]

This thread is making me extremely sad.  I have tears in my eyes and my throat aches reading about people who lost their parent as a child as I just had to have  "the conversation" with my 14 and 11 year old children last night concerning "if something bad happens to me".  They shouldn't be saddled with that burden and responsibility.  I hate this predicament we are in.

[nycrtst85]

Hearing all of this i would just get a gun and shoot my head,quick and painless but what about the mess and cost of funeral not to mention families reaction but the suffering would def stop.

[Rerun]

  Meinuk 

What she said......   

[Meinuk]

  everyone.

[lawphi]

I haven't read all four pages, but we had a terminal family friend that refused dialysis. Her creatinine was at 6  and she died after a week.  She was only conscious for four days after that blood result.   renal failure was the official cause of death.

My best friend's grandmother died ten days after quitting pd.  My friend described it as very peaceful. 

[Straticus]

Wow!  I must have an angel looking over me.  During my second year on dialysis, I quit going and did not resume for nine months.  I had goten so frustrated with every aspect of my kidney disease and had given up.  I am reading these posts here and it looks like I was VERY lucky.  I was sick all the time during those nine months.  I was depressed and just didn't care.  Now I've learned to accept that I need dialysis and have a much better staff and dialysis center.  The nurses at DCI are phenomenal!   

[Bruno]

So many good posts, so much good life advice, so many good people in the truest sense. I confess that I have thought of ending it but two things have held me back...my wife children and now grandchildren, I love them so much...and when I asked my doctor, he frightened the bejesus out of me when he detailed how it would happen.

[Lillupie]

I am totally and 100% with you.
Lisa\

My plan is to drink about 5 banana milk shakes.  I figure 2 days!  I would think if you don't pee at all (like me) you can't last too long.

But I am tired of the little things like the staff being idiots and now there is an unexplained lump on my nondialysis arm and I'm still dealing with diarrhea and my heart flutters all the time now. 

Lord either heal me or take me home because I'm tired of Purgatory!

 

[unlucky]

I was denied again for a transplant.  I don't want to continue dialysis.  I am angry, upset, frustrated, confused, etc.  I haven't made a decision yet. I'm tired of being sick and tired.

[malaka]

Anybody here remember the political humorist/columnist Art Buchwald?  He died of CKD.  In the end, he withdrew from dialysis, but shocked his docs by living a long time in hospice.  Here's a link to his final column.  I hope I'm not violating any rules here.

http://www.washingtonpost.com/wp-dyn/content/article/2007/01/19/AR2007011900444.html

[galvo]

Thanks for posting that, malaka. Each time I read it, my appreciation of, and admiration for, Art increases. Indeed: "What's it all about, Alfie?" Alfie? Alfie?

[CebuShan]

Wow! I can't believe that I found this thread.
I honestly thought that it was just me! I have thought about stopping quite a few times. I am still going back and forth about whether or not to jump through all the hoops to try for a transplant. My husband is willing to donate in one of those cross transplants(?) I'm O neg and he's A pos (Also a factor in why we never had children of our own)
I am so relieved to know that I am not the only one to have thought of this.
My husband has gotten better since I made him sit down and read some of the posts on IHD.
If it wasn't for him and my "babies" (the cat and the dog) I probably would have stopped or never even started!

[monrein]

Cebushan, what do you mean about not having kids because of different blood types?  I'm confused.  I understand the dilemma of having kids because of kidney disease but not blood type.

[CebuShan]

This was 25 years ago. There was something about our blood types that didn't work for the babies. I kept miscarrying. They tried to give me a shot that was supposed to "fix' the problem but it didn't work. We just left it at that because in vitro, etc. was just too expensive for us at the time. Don't feel sorry for us though. We have never been without kids. We are the unofficial babysitters for our church. In an emergency, it's a lot easier for us to come over to stay then try to find places for all the kids. Our neighbors kids are always at our door. I don't mind, they are great kids and always cheer me up. Plus, the dog likes them!   
I may not have had biological children but I have "had" 42 kids. My husband & I sat and counted the ones that have stayed with us or we have taken care of over the years (Beyond just teaching at the Church). We call it "Parenting on the Run"! Most of those kids we have had the privilege of watching grow up, get married and have kids of their own. Now we take care of the "grandkids"!
    Monrein for reminding me of All My Children (    )
Just yesterday, my neighbor's daughter picked some wildflowers and made me a card from "my secret admirer".       

[gothiclovemonkey]

This was 25 years ago. There was something about our blood types that didn't work for the babies. I kept miscarrying. They tried to give me a shot that was supposed to "fix' the problem but it didn't work. We just left it at that because in vitro, etc. was just too expensive for us at the time. Don't feel sorry for us though. We have never been without kids. We are the unofficial babysitters for our church. In an emergency, it's a lot easier for us to come over to stay then try to find places for all the kids. Our neighbors kids are always at our door. I don't mind, they are great kids and always cheer me up. Plus, the dog likes them!   
I may not have had biological children but I have "had" 42 kids. My husband & I sat and counted the ones that have stayed with us or we have taken care of over the years (Beyond just teaching at the Church). We call it "Parenting on the Run"! Most of those kids we have had the privilege of watching grow up, get married and have kids of their own. Now we take care of the "grandkids"!
    Monrein for reminding me of All My Children (    )
Just yesterday, my neighbor's daughter picked some wildflowers and made me a card from "my secret admirer".       

Beautiful, and wonderful!
"true wealth"
you are blessed by Him,and should continue to be a survivor even though its hard, God has a plan for you my dear.

[harley123199]

I have quit dialysis 5days ago and are feeling fine any suggestions?