I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: BarbP on September 09, 2015, 11:14:45 AM
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As stated in my Intro, I'm the sole Caregiver for my Mom who is 95-1/2 (96 in January). She's been treated for kidney disease for several years and has maintained pretty well at around GFR 19 to 25. Over the past year, her GFR has dropped and the most recent measurement is 10, so at her last appointment with the neph last week, he recommended that she get an AV fistula put in place, in prep for starting dialysis.
In addition to her ESRD, she also has CHF. However, there have not been any particular problems with the CHF in about a year and a half. She has irregular heart rate and takes medication for high blood pressure. She is incontinent (both ways) and wears Depends 24/7.
Currently she has no edema issues, and she is still urinating. She is on a low dose of Lasix. She's not experiencing symptoms of kidney failure such as metallic taste or her food tasting strange, she's not sleeping more (in fact, she's not been sleeping as much lately), no nausea or headaches, nothing like that. She does not have dementia, although she is occasionally forgetful. She drinks about 32 oz of fluid in a day, although I try to get her to take more water.
She wants to see her cardiologist before having the AV fistula done, and has an appointment with him next week. We are hoping to find out from him whether he feels her heart and vascular system will handle dialysis. Her arms are very thin, her skin is thin and tears easily (just bumping it), and it can be difficult to draw blood for labwork.
Basically, the decision whether or not to go on dialysis will be hers to make. At this point, I am looking for information that I can give her that will help her make that decision. We would need to travel 45 miles to the dialysis center (so a 90-mi roundtrip). We understand that will be 3 times a week ... can we choose to schedule her for afternoons or will the schedule be made by the dialysis center?
She is able to get up with assistance, walk short distances with her walker, but does not have much stamina at all. Her neph seems to feel she will have lots more energy, but my concern is that any energy benefit she may get from dialysis will be wiped out by the energy depletion involved in the travel and undergoing the treatment. It would be a real shame if she ended up being so exhausted by the treatments that all she can do at home is sleep.
Just would like to hear thoughts from anyone -- what do you think? and what would you recommend if it was your Mom?
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Very tough and delicate situation ......
If it was my Mom I would
First ...seriously consider and discuss going on dialysis. And if she decides to do this ....
Second ... based on 90 mile round trip consider home dialysis ....
Third ... while a fistula is considered the gold standard; consider a catheter. Based on her skin issues will she "welcome" daily (or thrice weekly) cannulation. Does not sound like she is very mobile so perhaps infection of catheter issues can be minimized. Also ask if she is a candidate for PD.
I had an uncle that was told at 96 he needed to go on dialysis. He suffered from seriously arthritis pain all his life. I never saw him walk if he was not hunched over. He refused treatment and lived perhaps a year longer.
Another part of the equation. I would expect your Mom's CHF will be worse as her kidneys get worse from the added fluid she may retain.
Most of this is probably not the best medical advice but everyone's situation is different.
Ask all the questions you can of both the neph and the heart doc. Then make the decision that is best for your Mom and you.
I wish you all the best of luck in this journey.
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I wonder if Home Hemodialysis with a catheter would be a possibility here?
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Has your mother's nephrologist clearly and honestly told her just what dialysis is and how to live with its numerous side effects? Too many nephs do not explain what dialysis can do to a patient's quality of life, especially if the patient is elderly.
Is dialysis something your mother wants to do?
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I wonder if Home Hemodialysis with a catheter would be a possibility here?
I don't know -- I'm not sure that she would be able to stand having it done via peritoneal. She had an operation to stabilize an Abdominal Aortic Aneurysm in 2007, and although it healed fine, there is a lump on her abdomen from it and she can't stand wearing elastic waist pants that come all the way up to her waist in front, she pulls the fronts down because anything resting at all firmly on that area is uncomfortable for her.
Also, there are other things about home dialysis that I'm not sure about, such as if plumbing is needed, does Medicare/Other Insurance pay for that?
And I feel fairly sure that if she does decide on dialysis, she'd want to start it in the clinic where she can get used to it, before changing to having it done at home. The other aspect of this is that there IS actually a dialysis clinic right here in her small town, but she does not like the nephrologist associated with this clinic. Her own nephrologist is associated with the clinic that is the 45-min drive away. So if she wants home dialysis, I'm not sure HIS clinic would be involved ...
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Has your mother's nephrologist clearly and honestly told her just what dialysis is and how to live with its numerous side effects? Too many nephs do not explain what dialysis can do to a patient's quality of life, especially if the patient is elderly.
Is dialysis something your mother wants to do?
I would say he has not (yet) explained the side effects. He explained what it is and does, and I explained more to her later because she doesn't hear well and never hears all that he says. So she understands the basics of how it works. But as to side effects, he has not said. I've read about some of them, but I can't be sure what really might apply, so I haven't gone into that with her. What he did say was that she would have "so much more energy". And I think to myself ... for a woman of 95-1/2 who is partly blind and basically just sits all day and does nothing but listen to music and chat now and then, and read a little bit in the evening, and who can walk a little (bad knees permitting) but needs help to get safely up and down from chairs and such ... what would "so much more energy" give her? More energy won't renew her sight, or refresh her bad knees, or cure her arthritic hands.
I'd like to hear more about what side effects she might experience -- preferably side effects that are common to dialysis patients, not necessarily the side effects that would cause issues with her CHF (yes, we do know about that).
.
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Unless that GFR number was taken by a 24-hour urine collection test (unlikely in a person who is incontinent), then you MUST take that GFR number with a grain of salt. My GFR was way down to 5 before I started dialysis, and most Nephrologists will tell you that it is impossible to still be functioning with a GFR that low. In my case, I had the 24 hour collection test, and it proved that my GFR blood numbers were always about 5-7 points low. Your mother MAY still have an actual GFR number in the mid-teens. Also, GFR numbers (from blood tests) vary widely due to how much fluid the person has been consuming. Generally, the less fluid intake, the lower the GFR number.
If this is the case, you might be able to treat her diminished kidney situation through diet alone. You will have to visit regularly with a doctor (at 95, you probably already are), and you'll need to set up a personalized low-protein diet. The downside is that such diets tend to leave the person with little energy, but at 95, does this really matter much? With any luck, you might be able to keep this up for a couple of years (god knows, I did...), which would bring her to age 98. Being perfectly honest, and no insult meant, what, in your opinion, is the likelihood that she will reach this age, either on or not on dialysis?
I would talk about this with the nephrologist as well as her primary-care doctor. You might also want to contact a Gerontologist.
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BarbP,
If it was my mother, I'd want to fight for her life no matter what. However, I do know of a woman in her 90s who, facing the prospect of kidney failure, was simply told to expect death & to prepare for it. They saw no point in initiating dialysis. She ended up dying peacefully in palliative care with her family around her. It shows how access to medical care can vary, depending on where we live and our particular circumstances.
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Unless that GFR number was taken by a 24-hour urine collection test (unlikely in a person who is incontinent), then you MUST take that GFR number with a grain of salt. My GFR was way down to 5 before I started dialysis, and most Nephrologists will tell you that it is impossible to still be functioning with a GFR that low. In my case, I had the 24 hour collection test, and it proved that my GFR blood numbers were always about 5-7 points low. Your mother MAY still have an actual GFR number in the mid-teens. Also, GFR numbers (from blood tests) vary widely due to how much fluid the person has been consuming. Generally, the less fluid intake, the lower the GFR number.
If this is the case, you might be able to treat her diminished kidney situation through diet alone. You will have to visit regularly with a doctor (at 95, you probably already are), and you'll need to set up a personalized low-protein diet. The downside is that such diets tend to leave the person with little energy, but at 95, does this really matter much? With any luck, you might be able to keep this up for a couple of years (god knows, I did...), which would bring her to age 98. Being perfectly honest, and no insult meant, what, in your opinion, is the likelihood that she will reach this age, either on or not on dialysis?
I would talk about this with the nephrologist as well as her primary-care doctor. You might also want to contact a Gerontologist.
Her neph wanted a 24-hour urine collection done, in spite of her incontinence. We tried. Of course, her Depends got all the urine secreted overnight, as well as small amounts throughout the rest of the 24-hour time period. So there was not much to test ... I think the GFR from that came back at 3.9, but she also had bloodwork done and the GFR from the bloodwork was at 10. I push her to drink more fluids, but after her cup of tea (decaf or herbal) and 6 oz of water for her meds at breakfast, it's like herding cats to get her to drink more during the day -- I can usually manage to get her to drink another 8 oz (juice and more water or sometimes 7-Up).
Also, her neph wants her to get MORE protein. She has corn flakes and fruit and a muffin for breakfast, sometimes snacks a little in the afternoon, and barely eats dinner which is where most of the protein is served. She's pretty rigid about what she'll eat and when, so although I can get her to change her breakfast sometimes and have eggs, that's not often enough to help much. She won't drink Ensure or any of the other protein drinks, although I can get her to take the Ensure protein fruit drinks at times over the course of a week.
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BarbP,
If it was my mother, I'd want to fight for her life no matter what. However, I do know of a woman in her 90s who, facing the prospect of kidney failure, was simply told to expect death & to prepare for it. They saw no point in initiating dialysis. She ended up dying peacefully in palliative care with her family around her. It shows how access to medical care can vary, depending on where we live and our particular circumstances.
NOT doing dialysis is of course the other option. She might live another year either way, and I say this mainly because I've seen her bounce back amazingly well from other issues that have come up in the last couple years. Last year we weren't sure she'd still be with us at Christmas, but by Christmas she was doing better than she had done the whole year.
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Wow. What a terrible position to be in. I can tell you from my experience, the quality of life left would be what I looked at most. My dad had a stroke at 40, leaving him without right side mobility and limited speech. He was a teacher and coach. At 42 he started dialysis, with multiple problems with access clots and infections. At 55 he had another stroke. We were told that he could go to a nursing home and continue dialysis, or we could stop dialysis. We chose to stop. It was the hardest decision I have ever made. However, I tried to put myself in his position and think about what he would want. He always made us promise no nursing homes and no pre-funeral viewing. Keeping this in mind, we all agreed. You are lucky that your mom can express her wishes. If she wants to do it, let her. If not, let her. The side effects of home dialysis for me were minimal, but I never did in-center. There seem to be some who do great and others who struggle. I will offer one small piece of advice, if she decides she doesn't want to dialize. Call a hospice type organization for the final days for pain control, etc. my dad passed away in the hospital and his care was not good. We used Vitas at the house for my Grandma and they were awesome! Many prayers for you both as you embark on this journey. It is not an easy one, and she is lucky to have you with her. :cuddle;
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A thought just occurred to me. Mom has a Living Will ... does dialysis fit into the category of the kinds of life-sustaining things normally refused by a Living Will?
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Another thing to consider is that no matter what type of dialysis one does, one HAS to keep up with protein intake. Albumin levels have a lot to do with survival and quality of life, and dialysis more or less "sucks" the protein right out of an already vulnerable body. Your mom's already low-protein eating would be a problem when doing dialysis.
KarenInWA
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A thought just occurred to me. Mom has a Living Will ... does dialysis fit into the category of the kinds of life-sustaining things normally refused by a Living Will?
I am not sure about that. You would have to check with someone more familiar with legal aspects of a living will. From what I understand, the living will only goes into effect if the person is incapacitated and unable to make decisions. Since your mom still has the capability to make choices for herself, I wouldn't think that applies. I could be totally wrong, so you should definitely do further research. Best of luck to you both!
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Brunori et al6describe the first randomized controlled trial to compare the effects of a sVLPD [supplemented very low protein diet] versus initiation of dialysis on two hard, clinically relevant endpoints – survival and hospitalization. One hundred twelve elderly Italian patients 70 or older with very advanced CKD (gfr between 5 and 7 mL/min) but without uremic symptoms were randomly assigned to initiate hemodialysis or the sVLPD during a hospital admission scheduled to evaluate the need for dialysis. Brunori G, Viola BF, Parrinello G, et al. Efficacy and safety of a very-low-protein diet when postponing dialysis in the elderly: A prospective randomized multicenter controlled study. Am J Kidney Dis. 2007;49:569–580
The 1-year mortality rate of the end-stage renal disease patients recruited was approximately 15%, which is just slightly higher than rates for similarly aged individuals in the United States without kidney disease 1 (rates rise to nearly 50% in US elderly patients on dialysis).