My wife has been on both PD and hemo for 5 years but is now refusing any dialysis ..... and im worried how long she has left
with a efgr of 4 her kidneys are pretty much gone and ive noticed her twitching pretty bad in her sleep .... i know her pottasium is 7.2 and i know this is dangerously high
my gp thinks she,s only got a few weeks left ....
the kidney consultant,dialysis nurse,gp and myself have all spoke to her informing the dangers but she is adamant ......and as you know you cant force a patient to do dialysis
any information would be appreciated
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brianthesnail
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HI Brian,I am so sorry. I do not understand why but it is a personal choice. I hope that they direct you both to hospice. If she is stage 4, is there a chance she can live without dialysis? I am stage 5 and doing fine without it. It all depends on the person. But I also am on a very restrictive diet. My choice. And you absolutely correct about the potassium. There are things she can do to bring that down and I am surprised the doctor has not recommended it. Wish I had better things to say.
Oh dear, Brian, I really feel for you both. Your wife has already done so well to have persevered with dialysis for as long as five years and obviously with an eGFR as low as 4,, currently dialysis remains her only choice unless transplant was to become a possibility. However, research is ongoing and who knows what might lie around the corner for those currently on dialysis - would that thought perhaps give her hope and encourage her to hang on to dialysis a little longer? Has she received any input from a counsellor experienced in that area?
I so empathise with your situation, not least because my hubby is terminally ill and just yesterday said that he has had enough. Hospice are in the frame for us, and, as bassetmommer has suggested, please don’t hesitate to contact them for help. Lots of good luck wishes.
Situations like this are truly difficult. Has your wife shared why she is choosing to discontinue dialysis?
My father had chronic kidney disease and was ultimately placed on in-home hemodialysis. I was one of his care partners. He shared with me once that he started hemodialysis at my mother’s request. She had begged him to start. So, he started dialysis.
He did not have a good experience with dialysis because he had so many other severe medical problems. He was clear when talking with me about this. He would not have put himself through dialysis had my mother not begged him to start dialysis. He lived for approximately three years on dialysis. While his attitude remained good, his experience with dialysis was not good; his quality of life was pretty bad.
I’m in Stage V but not yet on dialysis. I’m also actively waitlisted for a deceased donor kidney transplsnt. However, when going through renal failure patient education, I decided that I would deny treatment should I have several additional medical problems that could not be effectively treated. Why? Because I saw first hand what dialysis cannot achieve; it cannot achieve quality of life for a patient with severe medical conditions that cannot be effectively treated. I see no point in dragging myself through dialysis for a marginal quality of life.
Having shared my personal decision, I would also say that the decision to discontinue or deny treatment should be made with full information and all parties it will effect aware of the decision. I certainly totally supported my father’s decision and know that if he was still alive today he would support my decision. He and my mother discussed treatment options. They did NOT discuss these with their adult children...
Ultimately this decision is your wife’s. However, it’s important, in my opinion, for all who will be touched by her decision to know and understand her choice. Hopefully then her loved ones will be able to support her decision.
Again, such a difficult situation. There are no easy answers. You and your wife are in my prayers.
i'd get all the information i could, present her with a couple of alternatives and then say lets try these things if that doesn't work. then we stop the .....
it sounds like she believes there is no hope no light at the end of the tunnel. you've got to find out if there is light and if there is tell her and she if she changes her mind.
I'm so sorry to hear about your wife refusing to do dialysis. Please start praying to God on your wife's behalf that she will go back to dialysis. I'm not sure if you're wife realizing that she is being selfish and how much you need her in your life. Maybe you should ask your wife why is she being so selfish.
This is not selfish, it is a choice. Her choice ... she needs support not people being selfish to keep her in a situation that she does not want. Quality of life is big in these decisions and very personal.It is between her and her Lord God. Everyone else needs to turn to God for support and not depend on her.
Porter if I offended you or your wife I want to apologize. This is your wife's decision, I say that you should continue to be there for her,and cherish all the moments that you have with her. Let her know how much you love her every day, and if you can tell her how much you will miss her.
Selfish?? Clearly you have not reached the stage of your disease to understand what its like to feel like you are just existing not living. I've already been through a liver transplant and my kidney gfr now hovers between 16 and 20. I have terrible symptoms from ckd that may get better if i go on dialysis,, but no guarantee. I already made decisions for my future not because I am selfish but because I'm the one living this way. Not anyone else. BTW I wonder if you would say the same if we were talking about someone with cancer choosing whether to get chemo?
I have Stage 4 kidney disease , only 24 % of my kidneys are working and I’ve decided not to do dialysis, I’ve done talked to my husband about it, I feel like that’s no life to be hooked up to a machine at least 3 days a week for 3 to 4 hours a day, that’s just my decision, you have our prayers
Dialysis while still in stage 4 actually can remove more residual function. It's all about how the patient feels, lab values, self management with meds, diet etc. Many have been able to maintain lifestyle to 3 %, while others need it at eGFR of 10. It is necessary to individualize this treatment. Blessings
I respect your decision. Depending on the underlying condition, passing away from kidney failure can be very slow and grueling too - maybe that's why dialysis was invented. But I'm sure you've thought through the decision well. It is after all your body, your choice. And your destiny is yours to make. Wishing you satisfaction and peace.
Each person must decide for themselves, as you say. Many on dialysis continue to work, volunteer, travel, get married go to college, have families, start businesses. Ive done most of these. Had I chosen to deny dialysis I would have missed a sons wedding, births of 10 grandchildren, HS graduation for 1 daughter. I would have missed out on work, travel, 3 moves, volunteering and much more. Yes, I've had hurdles, but life presents hurdles without dialysis. It's life. It's living. I continued with my own hobbies like knitting, embroidery, gardening, walking, taking classes and more.
I've also overcome near insurmountable obstacles. No, dialysis may not offer some a quality of life. I, however have chosen to view all I've lived through as quality for ME! I know many who look at me and shake their heads in sadness at a life unfulfilled. It's okay though. "I" feel my life is and has been filled with "quality living." To me that is what matters.
A life worth living. A choice.
I've been told many times a life on dialysis 4 hrs 3X week is no life. How many are spending 12 hours playing golf, biking, running, yoga etc --all things to help the body live -- or hours per week on social media, emails, watching movies,/TV, playing games online, reading books, listening to music....things others may consider a waste of time or of a life. So, again its all a very personal decision, one notto be unduly influenced by the fear of others being left behind alone. Hang in there.
It’s sad to read your post and I’m sure you are in great pain watching your wife.I have no advice to offer except I watched my late husband suffer from of then hemo , it was very painful he would complain over & over again. You have to look at the quality of life she feels she’s getting , she’s probably feeling it’s not worth the getting hooked up to a machine three times a week.
Painful as it maybe respecting her wishes and trying to make her as comfortable as you can are paramount at this point. God bless you and give you the strength you need to get through this.
Her choice does she want to die? Then she has to let people know or does she have a will. My mom was on dialysis and for her it was very difficult and not to mention my dad and myself. She didn’t follow her diet so she was always sick didn’t take her meds either she was diabetic with congestive heart failure and on dialysis it was sad and horrible and on top of it she was always getting hospitalized. She had no life being a slave to the machine 3 times a week for 4 hours each time. She past away 3 years ago this week she had cardiac arrest and died in my dads arms. I feel you but at the end of the day it’s her choice she’s an adult and if her mind is all there nothing you can. Good luck it’s a horrible way to live especially if you don’t take care of yourself and listen to the people that mean well.
Hi Brianthesnail. I know you're still mulling over this situation as a partner and caregiver. I'm also a caregiver to my husband who is on PD. It's truly a journey, isn't it, with many highs and lows. In this situation, decision making is so hard and your heart breaks because neither choice is optimal. I see this regularly as I belong to a FB group just for "spouses of patients on dialysis" and these end-of-life issues come up almost daily there. I've noticed that there have been several instances when one's spouse, after transitioning to hospice, was denied any dialysis services even when the patient had severe edema issues or similar issues affecting comfort. If hospice is the choice you and spouse select, please check into this aspect of it so you and your wife can either include such arrangements or are fully prepared to go without. Since I was unaware of this, I thought you would want to know upfront about this too. From one caregiver to another, sending up heartfelt prayers for peace and resolution. May the time you have together be loving and memorable.
Once in hospice you can legally change your mind at any time and return to dialysis, it cannot be denied. In the U.S. , dialysis for fluid removal can and to my understanding is given to help relief and give physical comfort. Blessings
I have definitely read where dialysis doesn't happen automatically in hospice care. Medicare, other than in exceptional situations, denies dialysis for those in hospice. So patients can be left to linger while exceptionally swollen and uncomfortable. I know that I will try very hard to arrange in advance that relief is provided at the right time for my loved one should it come to that. Since most in hospice no longer want to be on dialysis - knowing "how to" at what "point" to reintroduce a procedure such as dialysis for comfort and relief is critical in my opinion. A patient can always hop out of hospice, return to regular care, and receive dialysis that way of course - but this generally contradicts the patient's wishes to exit life. Perhaps the best option is the lesser-known option, palliative care, which apparently works alongside one's own doctors to provide comfort care and is covered by Medicare, through most of it. For those interested, this link addresses the problem with traditional hospice: 1800hospice.com/blog/medica...
If you are on facebook, there is a group called Natural Kidney Journey that is trying to avoid dialysis by following a very specific and restrictive diet. Quite a few have been successful in getting off or avoiding dialysis. It's worth a look as a last resort. Take Care.
When my Michael lost both of his kidneys due to cancer, he said he would sooner die than have to go on dialysis because he believed we would have no life. How wrong he was! I asked him to give it a try before he decided to let life go.
After 6 months of going three days a week to a dialysis center, we transitioned to home hemodialysis and have been doing it at home for two years today. It gives us so much more flexibility and wiggle room to accommodate our days' activities, no driving, no waiting, and we can do dialysis more often, so his blood his cleaner, his diet and fluids aren't so restricted, and he feels better. We've also traveled numerous times to Hawaii, where he can go in-clinic while we're there.
I am aware that dialysis does not work out for everyone due to various reasons, circumstances, and attitudes. And when someone decides not to continue, I've read that it can take between a week to two weeks approximately before they pass. Meanwhile, hospice can supply medications and care guidance to make the passage as comfortable as possible.
I wish you peace and acceptance, Brian, if your wife truly wishes this passage.
Meanwhile, I think you need a hug,
Gotakidney
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