What do you know about kidney dialysis?

[shortbun]

Our dear auntie, aged 80, is frail as can be. The doctors are saying she is near dialysis. I say she can't endure travel 3X weekly and a 4 hour procedure each of those days. The alternative is allowing whatever is wrong with her kidneys to take her. She can not go to the bathroom alone, she can no longer walk alone, she has great brain function but her body is a mess. She eats almost nothing, rarely drinks anything. A doctor appointment puts her in bed for 24hours to recover. My MIL is caring for her, sisters, and MIL is 77. This is taking a toll on MIL too. We live a short 4 hour drive from them so we can't be of much help. Steps in and out of MIL's house make it really tough as auntie can not do steps and MIL isn't much better. Does dialysis have side effects? Pile on the info DISers!! Thanks!

 

[clh2]

I'm not very knowledgable on dialysis. I think I recall hearing from someone that it is an exhausting procedure. (i.e.based on the travel, the time required etc) for all involved (patient and caregivers.) It is like your whole world revolves around dialysis.

Is home dialysis an option?

And - has anyone had a discussion with you aunt about what she wants? I hate to say it - but it is time for her to put her affairs in order - so that all the caregivers know what she wants/expects regarding end-of-life decisions. I hope I am not sounding harsh, I really don't need to be. She may decide that no extraordinary measures be taken. She may decide that she wants every extraordinary measure taken to prolong her life. Either is fine - this is just a way to communicate to the caregivers. This takes the burden of deciding what to do off the caregivers.

to you. My parents are getting up into their mid- 70's, and have given their children the benefit of being organized related to their healthcare decisions. They have also specified their wishes in regards to donations, burials, cremations etc.

 

[jaminmd]

Our dear auntie, aged 80, is frail as can be. The doctors are saying she is near dialysis. I say she can't endure travel 3X weekly and a 4 hour procedure each of those days. The alternative is allowing whatever is wrong with her kidneys to take her. She can not go to the bathroom alone, she can no longer walk alone, she has great brain function but her body is a mess. She eats almost nothing, rarely drinks anything. A doctor appointment puts her in bed for 24hours to recover. My MIL is caring for her, sisters, and MIL is 77. This is taking a toll on MIL too. We live a short 4 hour drive from them so we can't be of much help. Steps in and out of MIL's house make it really tough as auntie can not do steps and MIL isn't much better. Does dialysis have side effects? Pile on the info DISers!! Thanks!

Yes, dialysis comes with its own set of complications, which are many. Patients can do either hemodialysis 3x week or peritoneal dialysis daily in their home.

 

[kaytieeldr]

PLEASE go ask on the disABILITIES Community Board if you haven't already! I had a sibling on dialysis for a little over twelve years. Much younger than your aunt, but still found it painful and exhausting.

 

[laurie31]

Our dear auntie, aged 80, is frail as can be. The doctors are saying she is near dialysis. I say she can't endure travel 3X weekly and a 4 hour procedure each of those days. The alternative is allowing whatever is wrong with her kidneys to take her. She can not go to the bathroom alone, she can no longer walk alone, she has great brain function but her body is a mess. She eats almost nothing, rarely drinks anything. A doctor appointment puts her in bed for 24hours to recover. My MIL is caring for her, sisters, and MIL is 77. This is taking a toll on MIL too. We live a short 4 hour drive from them so we can't be of much help. Steps in and out of MIL's house make it really tough as auntie can not do steps and MIL isn't much better. Does dialysis have side effects? Pile on the info DISers!! Thanks!

Because of the bolded, the decision is hers to make. Chl2 had great advice. She may decide that it's time to stop everything or she may decide that she wants it all, but it's her choice, and someone needs to sit her down and very explicitly lay out the options for her. She can't choose if no one tells her what the choices are. Her physician needs to tell her the pros and cons of choosing dialysis, and the pros and cons of NOT choosing dialysis.

Honestly, if it were me in her condition, unable to walk, tolerate even mild activity, etc, I would choose no dialysis and to be made comfortable (she should not need to suffer in any way). If she's already not eating well, it sounds like she may be ready to end things.

Dialysis is wonderful when it can prolong someone's life. People in renal failure who are otherwise in good health can live many fruitful years on dialysis, or be kept alive until a transplant becomes available. However, there is nothing noble about prolonging someone's dying.

 

[akhenaten]

I have ESRD and was on dialysis for about a month before I had a transplant..
There are so many factors.. and how she handles it would depend a lot on what other issues she has..



There is an at home option... for an excellent source of information I highly recommend an online group called ihatedialysis dot com... it is run by dialysis patients and they are a fantastic source of information...
They have bee a tremendous help to me!!!

The site is really wonderful.. not negative as the name implies...

 

[akhenaten]

Yes, dialysis comes with its own set of complications, which are many. Patients can do either hemodialysis 3x week or peritoneal dialysis daily in their home.

You can also do hemodialysis at home now...

 

[Jedana]

My husband is on home hemodialysis, and has been since 2008. He lost one kidney to adrenal cancer and the other had been failing, but we didn't know it.

A few things:
There are two types of dialysis. Hemo and peritoneal. Either one can be done in center (clinic) or at home. You can also do nocturnal hemo (which is dialysis extended over 8 or so hours) Both have their high points and low points. However, doing dialysis at home is the better option, IMHO.

In center, the techs are dealing with multiple patients (depending on the regulations where you live, it can be as many as 15). The tech does not have time to oversee everyone as closely as they should, especially with the elderly patients.

My DH says that being in center is rougher on the body than doing home. in center, it was 3 days a week, for about 3-1/2 to 4 hours a day. When you think about the fact that your kidneys work 7 days a week, 24 hours a day, that is pretty substandard. So, your "gunk" doesn't get cleaned out, you get tired and cranky and you don't have any energy.

On home hemo (I can't speak for Peri, we have not done that), we run 6 days a week for about 3-1/2 hours a day. DH decides how much fluid he needs to take off (instead of a tech, who doesn't understand that taking off more than 1.0 makes DH physically sick, but will insist on doing it anyways because he is 2.0 over his weight); he decides what day or days to take off; and we control what happens during the treatment.

Now, doing home hemo does require a partner, at least in training. My dh can run his entire tx himself, now that his fistula in his left arm is matured. Before, when he had a catheter, there was no way he could do it himself. So someone, or multiple someones, have to be available for that time frame as well.

One other thing to remember, with the catheter, you cannot get it wet. DH's was in his upper chest, so no showers. That was a long 8 months, with only sponge baths. He was so irritable and angry at the world, on top of feeling sick and weak all the time. But now, he is much much better. He made it through the last week with very little "required" physical downtime..which is really awesome since in 2008, he couldn't even walk around the Jax Zoo without passing out after 30 minutes.

All in all, it takes a lot of commitment to do dialysis, on both the patient and the caregiver's sides. There is a lot of information out there, I can post some links if you would like. But please, take into account what she wants. My DH said that if he had to continue in center, he would have stopped tx, and allowed nature to take its course.

 

[jaminmd]

You can also do hemodialysis at home now...

My husband is on home hemodialysis, and has been since 2008. He lost one kidney to adrenal cancer and the other had been failing, but we didn't know it.

A few things:
There are two types of dialysis. Hemo and peritoneal. Either one can be done in center (clinic) or at home. You can also do nocturnal hemo (which is dialysis extended over 8 or so hours) Both have their high points and low points. However, doing dialysis at home is the better option, IMHO.

I had no idea patients had the option of home hemo now. I was a dialysis nurse 20 years ago & times have changed!

 

[nmmom95]

I did 6 months of in-center hemodialysis with a catheter. Like pp said, the cath cannot get wet. I felt terrible on hemo. It made me very tired and during the dialysis, I would get very cold. It was a rough six months. I have been on peritoneal dialysis for almost 2 years. That also uses a catheter but it is in your abdomen and can get wet. Home hemo requires a care partner. Peritoneal dialysis can be done alone, but you have to lift 25 pound boxes and be able to keep the area where you dialyze very clean. You have to keep track of your weight and blood pressure to know which strength dialysate to use. If you don't get enough fluid off, you will go into fluid overload. If you take off too much, you will get dizzy and have muscle cramps. My husband helps set up the dialysate bags a lot. It's a pain, but it's better than the in-center dialysis.

 

[walden]

Our dear auntie, aged 80, is frail as can be. The doctors are saying she is near dialysis. I say she can't endure travel 3X weekly and a 4 hour procedure each of those days. The alternative is allowing whatever is wrong with her kidneys to take her. She can not go to the bathroom alone, she can no longer walk alone, she has great brain function but her body is a mess. She eats almost nothing, rarely drinks anything. A doctor appointment puts her in bed for 24hours to recover. My MIL is caring for her, sisters, and MIL is 77. This is taking a toll on MIL too. We live a short 4 hour drive from them so we can't be of much help. Steps in and out of MIL's house make it really tough as auntie can not do steps and MIL isn't much better. Does dialysis have side effects? Pile on the info DISers!! Thanks!

I'm very sorry and my thoughts are with Auntie and your family. I focused on the bolded above and especially on your description of her age and frailty.

Your Auntie is obviously competent to make her own decisions and respecting her right to make her own decisions and her right to be fully informed about her health condition and her prognosis are the most important things! Fully informed means that her physicians should also be discussing alternatives like palliative care and Hospice with her.

Here is my honest opinion re. dialysis for elderly patients. If I were her age, presumably with with heath problems other than renal disease, and obviously with limited life expectancy (heck, I'd be eighty!), and realistically unlikely to be given a kidney transplant due to my advanced age and general condition, then I, personally, would fight against being put on dialysis aged 80, tooth and claw. It would be different if I were younger and healthier, but at age 80 I'd want my last days to be calm, peaceful, as pain controlled as possible, and allowed time to put my affairs in order with the help of Hospice.

We had a similar diagnosis for my late FIL (who, unlike your Auntie, was well down the Alzheimers road.) We looked at and discussed all the pros and cons as a family, examined the side effects, and decided that his wish (in his right mind) would be to go to palliative care only. He died as pain-free as possible, and we are glad that we did not prolong his life with a medical procedure that would have been horribly uncomfortable and stressful for him. He was terminal and we had to accept that.

Again, my best wishes for your family and your Auntie as she makes her decision. This is a sad time.

 

[LuvOrlando]

Just a this must be very hard on all of you.

 

[lyeag]

I know a lot, unfortunately. My experience was years ago with my mother. We are talking the late 70's and early 80's. It was time consuming and difficult and she was in her 30's at the time. She and my father trained to do it at home instead of driving to a university hospital almost 2 hours away. Even at home, we had problems. She had a shunt come out of her ankle and she almost bled to death one morning. We had to monitor everything she ate and drank. It took hours to do 3 times a week. She was exhausted afterwards. She was doing it only because she was young and wanted a translplant. I was her youngest child and only 7 at the time. Her goal was to live to see me graduate from high school, which she did. BARELY.

OP, I am no expert, but I doubt your grandmother could go through what my mom did. I know advances have been made, but it is what it is. It is difficult, painful, and meant to be something until a transplant can be found. I am praying for you.

 

[Jedana]

I had no idea patients had the option of home hemo now. I was a dialysis nurse 20 years ago & times have changed!

We have some people at the clinic we use (even on home hemo, you have to have a base clinic for labs, supplies, etc) who have been doing dialysis off and on for over 20 years. One guy was one of the first to do home hemo!

The machines are very small, about 18" cube. Then there is a warmer on top of it, and then a pole to hang the dialysate bags. If you can't hang the bags, you can make batches in a black end-table sized machine--that requires water tests a minimum of every 6 months and can be difficult, if you have bad water, like here in FL.

the push now is to educate more people about Home dialysis (whether hemo or peri) and to push more for the nocturnal, as it is gentler on the system, and more natural.

 

[shortbun]

Wow. OP here. No way is Dear Auntie going to be able to withstand any of this. I am astounded that my MIL told me "the doctors were going to decide if she was going to start dialysis." It will kill her possibly faster than what's going wrong will kill her. Well, as I said, she's clear thinking. What I do not see happening is her being apprised of all she needs to know or maybe her not listening. I think both women are in denial and I'm not going to be able to convince them they need to look into pallative care or end of life/hospice care. They just block me out like the little boy in Peanuts does with his teacher and his parents,'blah, blah, blah-blah, blaaaah, blah..." Thanks everyone, I have what I need and I'm going to drink heavily to blot this whole thing out, j/k. Your good thoughts are appreciated.

 

[Shmily1]

My mom was in the hospital with bacterial pneumonia and was in a coma and we were told that dialysis may help to remove some of the fluids. She had it done one time and when I went in to see her, I told the doctor that no matter what, she would not go through it again. She looked so tired and drained like she was in pain and I couldn't see her having that done again.

Good luck to your aunt and your entire family. Dialysis works for some, but in our case, it didn't.

 

[akhenaten]

Shortbun.. I just wanted to ad how sorry I am that your family is going thru this!!

I also want to share that while i was on Dialysis.. I would see much older patients being brought in by ambulance for their treatments. I don't know anything about their personal health issues.... but they were so out of it... I swear I would never chose to "live" like that!!!


I hope the best decision is made for your dear Aunt...