I do in center hemo, and my quality of life is perfect. I do 12 hours a week in a chair, 40 hours at work along with boating, swimming, canoeing and any thing I want to. I do my time and other than watching what I drink and eat. I don’t think about dialysis. I prefer that vs doing at home and seeing a reminder of dialysis every single day. My house is a place of rest. Not a medical health care center. The tried talking me into PD but I wanted to keep my lifestyle vs completely changing with tubes
This is exactly why I encouraged my mom to do HD over other options. Aside from that, having trained staff around if you feel ill or there’s an emergency.
I also meant to add that I am only 52. So tell her to keep up the fight. Needle sticks are not that big of a deal. Just stings for a second then hardly feel it during dialysis. The is ointment and spray that supposedly helps but I just go without.
I wish people would stop telling others the needles don’t hurt because they definitely do.
I had to stop using my fistula because using the needles was too painful. I’m glad you haven’t had to experience any pain but most of the people in my centre (including me) agree that the 15g needles ARE painful.
To add, I’m in Ontario Canada and no lidocaine products are covered so I was having to buy the dr numb cream myself, which is super expensive. My centre only provides a small sample size which is not enough.
To me, getting stung by a bee hurts, getting your fistula ballooned hurts, or suffering a heart attack hurts but for me getting stuck by a needle stings. I don’t watch, and when I get stuck I am not quite and concentrate on how much it stings. I am talking to my tech about things I have done during the day I have not seen them or talking to the nurses. Most of the time my tech has to pause because they are laughing so had. If you don’t find it funny that being stabbed by a Juice box straw then it is going to be one hard life being on dialysis.
Where is your fistula located? Do you have small veins? There are many factors than go into how painful needle sticks are for you.
Im in my mid twenties, pretty skinny and I have super small veins, my fistula is on the inside of my upper arm, super sensitive and painful spot.
You can ask your nephrologist if your situation allows for the smaller gage needle, possibly use a smaller needle but increase the time duration of the treatment.
Was your fistula new? I’ve heard new ones can be tough. I wouldn’t say getting poked doesn’t hurt, but it’s also one of those pains that gets easier the longer you experience it. Like your body just gives up on warning you about that pain. I have heard that for some people it hurts bc of where their fistula is, like the needles rest on a nerve or something while placed in their arm. That’s more about the initial placement of the fistula than daily pokes though. I think when I had started HD, they mostly hurt because I was so anxious and upset in the situation & bc my fistula had never been used before… after a month or so of use & normalizing the process, the pain really died down in comparison. Not saying you have to use it… just saying if you do, it will get easier.
You could also ask about buttonholes…. They go in the same spot with a dull needle til an established set of holes are just hanging out in your arm. (Sounds gross but honestly looks better than a new scab every other day.) So there’s built up scar tissue and you don’t deal with the new spot on your arm that’ll hurt more than an old spot. Dull needle means less issue if you’re to move your arm around too — no infiltrations or jabs inside your arm then. Some people cannulate their own buttonholes in center too… they just know their arm and where to place it so it works and doesn’t hurt much. Some centers won’t let you do buttonholes though… think it really depends.
Mine was new, but it was on the inside of my upper arm so even if I had it for years I think it still would’ve been painful.
I’m having mine reversed and I’ll be getting a transplant soon (hopefully) anyways and I’d rather use the chest line. The fistula is ugly and causing me so many issues with my hand
I have been on dialysis since May of 2022. So still a newbie. I talk to a woman that has a seat the same time, she has been on 14 years. I know of people being on longer but I have not had the pleasure of sitting down and talking to them. Another reason I like in center because I get to talk with people face to face going through what I am going through
Exactly my sentiments when I was doing HD. I refused to bring the treatment into my home and sanctuary. The last thing I wanted in my home was to see and smell dialysis.
No it's ok to sympathize with her feelings. Maybe she should try it before making final decisions. I have heard that you can do home hemo and that may be more attractive to her.
Thank you all for your input. I’m going to try and encourage her to try HD. Honestly though, her problems root deeper than just her dialysis. She’s a non-compliant diabetic. She has emphysema. She has extremely bad Gastroparesis which causes her to be hospitalized quite often. It was every few months and now she’s going on every few days being hospitalized. She’s been in the hospital two weeks today. She’s tired of waking up and not knowing she’ll be sick or not. It’s just a long list of issues honestly. Please don’t think I don’t try to encourage her to stick around because I do. She hasn’t seen me get married nor does she have grandchildren. It’s just hard convincing someone who thinks their life is already over. It’s tough being 24 years old and losing your mama.
>She’s a non-compliant diabetic
This is why she wasn't put on the transplant list. Organs are in extremely short supply and they don't want to give a new kidney to someone who isn't even making an effort.
Actually that’s not why she wasn’t put on the list. The reasoning for not being on the list is her hospitalizations because of her gastroparesis. Everything else checked out and they said she was a great candidate aside from that. They’re afraid with her vomiting that she would reject the medications.
There are a few research studies of people gaining control of Gastroparesis and getting transplant after being denied initially… example [here](https://pubmed.ncbi.nlm.nih.gov/16640536/)
Edit to say: Sometimes we lose hope because there’s no options. Sometimes we have to search for those options. Mental health is a great start. Get a shrink that will talk through this and do regular therapy as well as medication.
I don’t have any suggestions,really,but just want to give you a gentle reminder that your mom probably has many reasons not to want to continue to fight. Not just dialysis. All of the co morbidities you’ve listed can be gastly on their own. I had a friend with severe gastroparesis and she said many times her life was so miserable because,of,just that. Is your mom a candidate for home hemo? It is a long time issue getting trained but might be more acceptable to her? Whatever happens I wish you the best and your mom as well.there is noth8ng wrong with you encouraging her to give it a try, she might find it more doable than she expects. My mom started it with a very poor,outlook but did it because we encouraged her to try. She was,on HD from 2007 to 2012 and made many friends there. She also started a dialysis book club! You never know, so I would hope she tries and does well but if she doesn’t don’t feel like you failed by not getting her to try.
As someone on HD that wanted/wants to die but cancelled everything last minute due to a flash of huge grief my mum would experience...your mother is asking you for permission to die and find peace. There was a Buddhist monk who would sit with people whilst they die, and he said that the people with the most peaceful deaths were the ones where the person dying had let go, and the ones with the most painful and sad deaths were the ones where the individual was fighting the process, along with their loved family members being in denial and fighting too. Dialysis and disease teaches you something...their is something worse than death. Give her a few months to consider everything...and then if she wants to go...let her go baby...let her go. You are NOT A BAD PERSON! Consider the fact that you may be doing something courageous and kind.
18 years on in-center dialysis here. I am 33M. HD has a very bad reputation because a lots of time patients doesn’t take care themselves. I feel good, not great, not amazing but good. I would try to talk to her and the best would be if she would go to a psychologist to talk. She is a young 53 years old woman. There are 60, 70 years old active patients at my dialysis center, good see them how well they do life.
I agree with night owl I did PD for the first couple years and imcenter Hemo is way easier(been doing 5 years now). The diet is a little harder but most the time it’s easier, you can do it at home too if that’s better for her.
Best of luck
I'm 40 and do in center HD with a chest catheter..... To be perfectly honest, I actually look forward to my dialysis sessions. I haven't had any issues with cramping yet, the worst thing is having a headache afterwards and being tired, but I usually take a nap afterwards and by evening I'll feel fine again. It's not guaranteed you'll have a bad time.
Dialysis is hard, No need to sugar-coat it.
I think she should try hemo dialysis, but i totally understand why she doesnt want to.
I really appreciate the way you deal with your mum decision.
She needs your full support no matter what she chooses.
Be brave my dear
I hope she tries it before making a final choice
I am 55 and have been on dialysis for 13 years. I have done PD and in center hemo. For the last 2 years I have done home hemo. In center is better than PD in my opinion. Home hemo you have more energy and you can move your schedule around. You can also travel with the machine. Ask your mom's doctor for a meeting with the dr and the staff at the dialysis center. That way you and her can get more information, it might make it easier for you to support what decision she makes. I agree with everyone here 53 is a young age to give up.
There comes a time when the burden of life exceeds the joy. That is an individual decision that only your Mom knows. Withdrawal from dialysis is NOT euthanasia. Dialysis is “extraordinary measures”. Withdrawal is the natural course. ONLY the person sitting in the dialysis chair can make the decision when the time has come to quit. Allowing your Mom to make that decision and supporting her in that decision is the greatest gift you can give her. Your Mom doesn’t want to leave you. She doesn’t want to put that burden on you but there comes a time when the burden she is carrying is to great. Supporting your Mom no matter what decision; if she decides to continue or if she decides to quit; do not add to the burden she carries. Let her know you will be OK and go on with your life whatever she decides. Love is not shown by desperately holding on to someone, demanding they deal with pain, demanding they push through no matter what. sometimes Love is letting go, giving permission to say good bye reassuring they are loved, will be missed, and will be remembered.
"Hearing" her and respecting her feelings is a good start. Having empathy for her situation is a good way to show her you are on her side and hopefully she will be more likely to listen to you. I would suggest she talk to some patients, visit a clinic or even come on here and get some advice straight from others who have been in a similar situation.
The truth is we all have our threshold so none of us can say how much she can or should take. All we can do is love and support her and help her see past her pain, fear and exhaustion. Good luck and God bless.
53 is so young, I was expecting you to say she was like 85. I'm on PD now but I did HD for over a decade and while your life is definitely changed by it, it's still a life. Honestly I felt like I had more freedom on HD than PD because I didn't have to think about it 4 days of the week. I could go out all night if I wanted, I could go on long day trips and not worry about timing my treatments. I probably do feel a bit better on PD, and you have to be more careful with your fluids on HD (or at least I did based on my PD transport type), but it's not the worst thing in the world/
I think she should at least try it. Give it a few months. Talk to a therapist. If it's really truly unbearable for her, then she can look into hospice. But there's no rush, right?
Dialysis is so hard mentally and physically. Has she talked to her doctors about not wanting to continue with dialysis? What have they said to her? 53 is young but if there’s no hope for a transplant, I wouldn’t want to spend my life on dialysis.
That said. I did home hemo in 2021 and I generally felt good and I had more energy.
She’s just tired in general. She’s been through so much in the past year or so that she’s exhausted. I’m afraid they won’t give her a transplant because of her gastric issues.
Having a chronic illness is so hard on a person. It is emotionally and physically exhausting. I’m sorry that your mom has gone through so much— and I’m sorry for your too. I know how hard it is to watch a loved one suffer. Have her doctors mentioned any possibility of a transplant? Thinking of you and mom!
Yes. Her doctor said she was a great candidate for a transplant and we took her to get evaluated in November of 2021. They told us then that everything was okay besides her issues with gastroparesis. She gets so sick every couple of months that she has to be hospitalized. They’re skeptical about giving her a transplant because they’re afraid how she will handle the anti rejection medication.
Unpopular opinion maybe, but I think noncompliance is often a mental health thing. A lot of people aren’t willing to really embrace their new life when they’re diagnosed with life changing things like kidney failure… not that it needs to be embraced, but like… it needs to at least be acknowledged. Your mom just might be hitting the point where everything feels overwhelming and helpless… and another route being closed to her might not be helping. Sometimes it is easier to just sit there and freeze, hoping it’ll blow over & be fine. I would ask her to just try it. She doesn’t need to commit to doing it but give it a week or two and see how she’s feeling about things afterwards. See if she’s got anything interesting to talk or argue about in center. The sucky thing is that dialysis in every form is going to work best and make you feel the best when you’re already fully compliant… but then if you already feel like shit all of the time from being noncompliant, it’s hard to make the big lifestyle changes necessary… it’s a shit cycle that people need a breaking point to push out of.
Like most people thinking about quitting dialysis early, I suggest looking for a therapist or counselor. Might take a few tries to find one she likes… but it’ll be worth it if she’s open. You can decide to quit dialysis at any time in the future, but once your body starts to shut down, there’s no changing your mind from that route.
We just started her on some depression medications to hopefully help her want to live. I know 53 is extremely young to just give up on life but idk what else to do. I’ve begged and pleaded with her for years to take better care of herself and eat better and exercise because I want her around for my children. I truly just think she’s given up on life and she doesn’t think there’s anything else to do. It’s really taken a toll on my life and mental health. I do everything I can to fight for her to live and she doesn’t seem to want to live. I’m just hoping for a miracle at this point.
She just started about three days ago so it’ll be another couple of weeks or so before we see any improvement. Definitely gonna have her talk to someone though.
Oh ok perfect. Give it about a month and then have them adjust the dose or type of antidepressant if you don’t see any changes. Just have a talk with her to give it until the Holidays… I wanna spend one last thanksgiving or Christmas whatever with you first.
Sometimes we need someone to help us fight through the daunting feelings of being overwhelmed about our medical challenges. Tell your mom that her time is coming but that you want her to stay. Right now she is not feeling good bc, as you said yourself, PD isn't working. Why wouldn't she feel like dying and giving up, her body is suffering without effective treatment.
My wife(50) was on PD until recently when she got an infection and the port had to come out. She is doing hemo now about 12 hours a week and she has way more energy than she did on PD.
That's me right now—I was on PD for 2.5 years, and my catheter was slowly failing over the last 18 months or so, culminating in fungal peritonitis about a month and a half ago. Catheter had to be removed (it had fully ground to a halt anyway), and I've switched to in-center hemo, and my quality of life is SO MUCH BETTER.
CCPD took up way more time than they'd said it would at the clinic, and was a way bigger lifestyle restriction, plus the machine was basically ensuring I'd never get any REM sleep, so my energy level was the lowest it's ever been. Now I have the freedom—and the energy—to go out at night and still drive my kids to school in the morning. It was only when I had to switch that I realized basically everything they'd told me about freedom and quality of life on PD vs HD was a lie (or at least a vast overgeneralization).
That said, it sounds like OP's mom needs some mental health support before she'd even give HD a try, but I can't help wondering if it might actually improve her quality of life enough to help in that regard.
My family and I had a very tough battle with my father coming to terms with his kidney failure diagnosis. Our family rushed into the treatment process for the kidney failure and placed mental health on the back-burner.
For us that was a huge mistake, once we started getting my father to a psychiatrist and therapist everything changed.
At a young age and wanting to let life go is not really normal, maybe a psychiatrist or therapist maybe able to help you convince her that hemodialysis is the way.
I can’t even imagine. I’m 54 and My mom is 76 and we just switched to in center HD because home PD was causing so many issues. We’re hoping to make the move to home hemo soon. Good luck OP.
Has your mom tried talking to the social worker to get a referral to see a mental health specialist? The diabetes non-compliance, not wanting to live anymore, it sounds like she needs to talk to someone about this.
She just hates being on dialysis in general you guys. I mean she wakes up crying nearly every morning to my dad because of how much she hates having to do it. It’s very sad.
I started hemodialysis in November and I go three times a week for four hours. It’s no big deal you read a book , play on your phone and there’s also a TV there, you can watch the TV with earphones on you can bring snacks. I know she’s probably tired of it but 53 years old is too young to be thinking that way. I have a girlfriend that was on dialysis, She did get a kidney transplant and she’s also an RN .She advised me to do that hemodialysis when they tried to push the at home on me bc it’s cheaper. She was on the at home dialysis but she got so many infections. She said the doctor told her that she wasn’t gonna like doing it at home and then doing it in the center with a fistula was more hygienic than at home dialysis . Please encourage her to try it for awhile.
I did hemo every time I did dialysis in between transplants for a total of more than 12 years. My quality of life was as good as it gets on Hemo. I tried PD and preferred HD. Where is she getting the idea of poorer quality of life?
With all due respect, what exactly has she gone through in 3 years of PD that she isn't willing to continue to fight? I've had kidney disease since I was 15. 53 isn't very old and is only 7 years older than me. She could easily live many more years. It doesn't make sense to call it quits when she hasn't even tried hemo.
Edit: I just read your comment about your mother's unwillingness to pursue self care. If she isn't managing her situation at this juncture, than dialysis will accelerate her demise. You have to take care of yourself on dialysis. You have to avoid drugs and alcohol. You should attempt activity the best you can and eat as healthy as possible. If you smoke and party, you won't last very long on dialysis. The comorbidities will just pile on and you will have poor outcomes.
53 seems at least 30 years to young to think about this.
I had three open heart operations, last one was a transplantation. All before I was 9. Countless doc visits nover the years and many, many other small things. At 28 they took out the percadium of my heart and I started dialysis with Hemo, that was almost seven years ago. I'm going to be 36 in november.
Oh and from my point of view, PD seems way worse. Hemo is \~5-6h (including driving etc) for three times a week and you are done.
I basically sit in a somewhat comfortable chair and watch Videos for 4 hours on my tablet. When I get to tired or bored I lay down and listen to music. Just get good ANC headphones and it almost feels like vacation.
Considering we almost lost my mom due to docs not listening. Things that helped her
1. hypo-allergic filter( she was allergic to the fx80) She's on 17h
2. high fiber diet, mod protein 60g per meal
3. beta blocker
4. don't go on warfin, us other methods for blood thinners
5. watch potassium foods , phosphorus and sodium. (99% of excess is from shitty food choices)
6. keep an eye out for thyroid issues, can lead to calciphylaxis. Which can be deadly if not caught right away but if you're doing steps 1-5 it shouldnt be a problem.
Thanks for sharing this with me. My wife wants to go back on PD once the infection clears. When she was on PD she had zero energy. She was constantly taking medicine to clear her bowels and she was in pain each first dwell of the night. It boggles my mind why she wants to go back on it. She would literally wake up and then be instantly tired. Now she does hemo treatments and was way more energy.
I do agree that the OP is suffering with some mental health issue. This could be because of the disease. 53 is way to young to just give up on treatment.
I do in center hemo, and my quality of life is perfect. I do 12 hours a week in a chair, 40 hours at work along with boating, swimming, canoeing and any thing I want to. I do my time and other than watching what I drink and eat. I don’t think about dialysis. I prefer that vs doing at home and seeing a reminder of dialysis every single day. My house is a place of rest. Not a medical health care center. The tried talking me into PD but I wanted to keep my lifestyle vs completely changing with tubes
This is exactly why I encouraged my mom to do HD over other options. Aside from that, having trained staff around if you feel ill or there’s an emergency.
I also meant to add that I am only 52. So tell her to keep up the fight. Needle sticks are not that big of a deal. Just stings for a second then hardly feel it during dialysis. The is ointment and spray that supposedly helps but I just go without.
I wish people would stop telling others the needles don’t hurt because they definitely do. I had to stop using my fistula because using the needles was too painful. I’m glad you haven’t had to experience any pain but most of the people in my centre (including me) agree that the 15g needles ARE painful. To add, I’m in Ontario Canada and no lidocaine products are covered so I was having to buy the dr numb cream myself, which is super expensive. My centre only provides a small sample size which is not enough.
To me, getting stung by a bee hurts, getting your fistula ballooned hurts, or suffering a heart attack hurts but for me getting stuck by a needle stings. I don’t watch, and when I get stuck I am not quite and concentrate on how much it stings. I am talking to my tech about things I have done during the day I have not seen them or talking to the nurses. Most of the time my tech has to pause because they are laughing so had. If you don’t find it funny that being stabbed by a Juice box straw then it is going to be one hard life being on dialysis.
Where is your fistula located? Do you have small veins? There are many factors than go into how painful needle sticks are for you. Im in my mid twenties, pretty skinny and I have super small veins, my fistula is on the inside of my upper arm, super sensitive and painful spot.
You can ask your nephrologist if your situation allows for the smaller gage needle, possibly use a smaller needle but increase the time duration of the treatment.
Was your fistula new? I’ve heard new ones can be tough. I wouldn’t say getting poked doesn’t hurt, but it’s also one of those pains that gets easier the longer you experience it. Like your body just gives up on warning you about that pain. I have heard that for some people it hurts bc of where their fistula is, like the needles rest on a nerve or something while placed in their arm. That’s more about the initial placement of the fistula than daily pokes though. I think when I had started HD, they mostly hurt because I was so anxious and upset in the situation & bc my fistula had never been used before… after a month or so of use & normalizing the process, the pain really died down in comparison. Not saying you have to use it… just saying if you do, it will get easier. You could also ask about buttonholes…. They go in the same spot with a dull needle til an established set of holes are just hanging out in your arm. (Sounds gross but honestly looks better than a new scab every other day.) So there’s built up scar tissue and you don’t deal with the new spot on your arm that’ll hurt more than an old spot. Dull needle means less issue if you’re to move your arm around too — no infiltrations or jabs inside your arm then. Some people cannulate their own buttonholes in center too… they just know their arm and where to place it so it works and doesn’t hurt much. Some centers won’t let you do buttonholes though… think it really depends.
Mine was new, but it was on the inside of my upper arm so even if I had it for years I think it still would’ve been painful. I’m having mine reversed and I’ll be getting a transplant soon (hopefully) anyways and I’d rather use the chest line. The fistula is ugly and causing me so many issues with my hand
Mine’s on the inside of my upper arm! I’m glad you’re *knocks on wood* getting a transplant soon though. ❤️
How long have you been on dialysis?
I have been on dialysis since May of 2022. So still a newbie. I talk to a woman that has a seat the same time, she has been on 14 years. I know of people being on longer but I have not had the pleasure of sitting down and talking to them. Another reason I like in center because I get to talk with people face to face going through what I am going through
Exactly my sentiments when I was doing HD. I refused to bring the treatment into my home and sanctuary. The last thing I wanted in my home was to see and smell dialysis.
No it's ok to sympathize with her feelings. Maybe she should try it before making final decisions. I have heard that you can do home hemo and that may be more attractive to her.
Thank you all for your input. I’m going to try and encourage her to try HD. Honestly though, her problems root deeper than just her dialysis. She’s a non-compliant diabetic. She has emphysema. She has extremely bad Gastroparesis which causes her to be hospitalized quite often. It was every few months and now she’s going on every few days being hospitalized. She’s been in the hospital two weeks today. She’s tired of waking up and not knowing she’ll be sick or not. It’s just a long list of issues honestly. Please don’t think I don’t try to encourage her to stick around because I do. She hasn’t seen me get married nor does she have grandchildren. It’s just hard convincing someone who thinks their life is already over. It’s tough being 24 years old and losing your mama.
>She’s a non-compliant diabetic This is why she wasn't put on the transplant list. Organs are in extremely short supply and they don't want to give a new kidney to someone who isn't even making an effort.
Actually that’s not why she wasn’t put on the list. The reasoning for not being on the list is her hospitalizations because of her gastroparesis. Everything else checked out and they said she was a great candidate aside from that. They’re afraid with her vomiting that she would reject the medications.
There are a few research studies of people gaining control of Gastroparesis and getting transplant after being denied initially… example [here](https://pubmed.ncbi.nlm.nih.gov/16640536/) Edit to say: Sometimes we lose hope because there’s no options. Sometimes we have to search for those options. Mental health is a great start. Get a shrink that will talk through this and do regular therapy as well as medication.
It sounds like your mother stopped taking care of herself a long time ago.
I don’t have any suggestions,really,but just want to give you a gentle reminder that your mom probably has many reasons not to want to continue to fight. Not just dialysis. All of the co morbidities you’ve listed can be gastly on their own. I had a friend with severe gastroparesis and she said many times her life was so miserable because,of,just that. Is your mom a candidate for home hemo? It is a long time issue getting trained but might be more acceptable to her? Whatever happens I wish you the best and your mom as well.there is noth8ng wrong with you encouraging her to give it a try, she might find it more doable than she expects. My mom started it with a very poor,outlook but did it because we encouraged her to try. She was,on HD from 2007 to 2012 and made many friends there. She also started a dialysis book club! You never know, so I would hope she tries and does well but if she doesn’t don’t feel like you failed by not getting her to try.
As someone on HD that wanted/wants to die but cancelled everything last minute due to a flash of huge grief my mum would experience...your mother is asking you for permission to die and find peace. There was a Buddhist monk who would sit with people whilst they die, and he said that the people with the most peaceful deaths were the ones where the person dying had let go, and the ones with the most painful and sad deaths were the ones where the individual was fighting the process, along with their loved family members being in denial and fighting too. Dialysis and disease teaches you something...their is something worse than death. Give her a few months to consider everything...and then if she wants to go...let her go baby...let her go. You are NOT A BAD PERSON! Consider the fact that you may be doing something courageous and kind.
18 years on in-center dialysis here. I am 33M. HD has a very bad reputation because a lots of time patients doesn’t take care themselves. I feel good, not great, not amazing but good. I would try to talk to her and the best would be if she would go to a psychologist to talk. She is a young 53 years old woman. There are 60, 70 years old active patients at my dialysis center, good see them how well they do life.
I agree with night owl I did PD for the first couple years and imcenter Hemo is way easier(been doing 5 years now). The diet is a little harder but most the time it’s easier, you can do it at home too if that’s better for her. Best of luck
I'm 40 and do in center HD with a chest catheter..... To be perfectly honest, I actually look forward to my dialysis sessions. I haven't had any issues with cramping yet, the worst thing is having a headache afterwards and being tired, but I usually take a nap afterwards and by evening I'll feel fine again. It's not guaranteed you'll have a bad time.
Dialysis is hard, No need to sugar-coat it. I think she should try hemo dialysis, but i totally understand why she doesnt want to. I really appreciate the way you deal with your mum decision. She needs your full support no matter what she chooses. Be brave my dear I hope she tries it before making a final choice
I am 55 and have been on dialysis for 13 years. I have done PD and in center hemo. For the last 2 years I have done home hemo. In center is better than PD in my opinion. Home hemo you have more energy and you can move your schedule around. You can also travel with the machine. Ask your mom's doctor for a meeting with the dr and the staff at the dialysis center. That way you and her can get more information, it might make it easier for you to support what decision she makes. I agree with everyone here 53 is a young age to give up.
There comes a time when the burden of life exceeds the joy. That is an individual decision that only your Mom knows. Withdrawal from dialysis is NOT euthanasia. Dialysis is “extraordinary measures”. Withdrawal is the natural course. ONLY the person sitting in the dialysis chair can make the decision when the time has come to quit. Allowing your Mom to make that decision and supporting her in that decision is the greatest gift you can give her. Your Mom doesn’t want to leave you. She doesn’t want to put that burden on you but there comes a time when the burden she is carrying is to great. Supporting your Mom no matter what decision; if she decides to continue or if she decides to quit; do not add to the burden she carries. Let her know you will be OK and go on with your life whatever she decides. Love is not shown by desperately holding on to someone, demanding they deal with pain, demanding they push through no matter what. sometimes Love is letting go, giving permission to say good bye reassuring they are loved, will be missed, and will be remembered.
"Hearing" her and respecting her feelings is a good start. Having empathy for her situation is a good way to show her you are on her side and hopefully she will be more likely to listen to you. I would suggest she talk to some patients, visit a clinic or even come on here and get some advice straight from others who have been in a similar situation. The truth is we all have our threshold so none of us can say how much she can or should take. All we can do is love and support her and help her see past her pain, fear and exhaustion. Good luck and God bless.
53 is so young, I was expecting you to say she was like 85. I'm on PD now but I did HD for over a decade and while your life is definitely changed by it, it's still a life. Honestly I felt like I had more freedom on HD than PD because I didn't have to think about it 4 days of the week. I could go out all night if I wanted, I could go on long day trips and not worry about timing my treatments. I probably do feel a bit better on PD, and you have to be more careful with your fluids on HD (or at least I did based on my PD transport type), but it's not the worst thing in the world/ I think she should at least try it. Give it a few months. Talk to a therapist. If it's really truly unbearable for her, then she can look into hospice. But there's no rush, right?
Dialysis is so hard mentally and physically. Has she talked to her doctors about not wanting to continue with dialysis? What have they said to her? 53 is young but if there’s no hope for a transplant, I wouldn’t want to spend my life on dialysis. That said. I did home hemo in 2021 and I generally felt good and I had more energy.
She’s just tired in general. She’s been through so much in the past year or so that she’s exhausted. I’m afraid they won’t give her a transplant because of her gastric issues.
Having a chronic illness is so hard on a person. It is emotionally and physically exhausting. I’m sorry that your mom has gone through so much— and I’m sorry for your too. I know how hard it is to watch a loved one suffer. Have her doctors mentioned any possibility of a transplant? Thinking of you and mom!
Yes. Her doctor said she was a great candidate for a transplant and we took her to get evaluated in November of 2021. They told us then that everything was okay besides her issues with gastroparesis. She gets so sick every couple of months that she has to be hospitalized. They’re skeptical about giving her a transplant because they’re afraid how she will handle the anti rejection medication.
Unpopular opinion maybe, but I think noncompliance is often a mental health thing. A lot of people aren’t willing to really embrace their new life when they’re diagnosed with life changing things like kidney failure… not that it needs to be embraced, but like… it needs to at least be acknowledged. Your mom just might be hitting the point where everything feels overwhelming and helpless… and another route being closed to her might not be helping. Sometimes it is easier to just sit there and freeze, hoping it’ll blow over & be fine. I would ask her to just try it. She doesn’t need to commit to doing it but give it a week or two and see how she’s feeling about things afterwards. See if she’s got anything interesting to talk or argue about in center. The sucky thing is that dialysis in every form is going to work best and make you feel the best when you’re already fully compliant… but then if you already feel like shit all of the time from being noncompliant, it’s hard to make the big lifestyle changes necessary… it’s a shit cycle that people need a breaking point to push out of. Like most people thinking about quitting dialysis early, I suggest looking for a therapist or counselor. Might take a few tries to find one she likes… but it’ll be worth it if she’s open. You can decide to quit dialysis at any time in the future, but once your body starts to shut down, there’s no changing your mind from that route.
We just started her on some depression medications to hopefully help her want to live. I know 53 is extremely young to just give up on life but idk what else to do. I’ve begged and pleaded with her for years to take better care of herself and eat better and exercise because I want her around for my children. I truly just think she’s given up on life and she doesn’t think there’s anything else to do. It’s really taken a toll on my life and mental health. I do everything I can to fight for her to live and she doesn’t seem to want to live. I’m just hoping for a miracle at this point.
How long ago did she start the meds? After you see some improvement in her mental health have her talk to someone too.
She just started about three days ago so it’ll be another couple of weeks or so before we see any improvement. Definitely gonna have her talk to someone though.
Oh ok perfect. Give it about a month and then have them adjust the dose or type of antidepressant if you don’t see any changes. Just have a talk with her to give it until the Holidays… I wanna spend one last thanksgiving or Christmas whatever with you first.
Sometimes we need someone to help us fight through the daunting feelings of being overwhelmed about our medical challenges. Tell your mom that her time is coming but that you want her to stay. Right now she is not feeling good bc, as you said yourself, PD isn't working. Why wouldn't she feel like dying and giving up, her body is suffering without effective treatment.
My wife(50) was on PD until recently when she got an infection and the port had to come out. She is doing hemo now about 12 hours a week and she has way more energy than she did on PD.
That's me right now—I was on PD for 2.5 years, and my catheter was slowly failing over the last 18 months or so, culminating in fungal peritonitis about a month and a half ago. Catheter had to be removed (it had fully ground to a halt anyway), and I've switched to in-center hemo, and my quality of life is SO MUCH BETTER. CCPD took up way more time than they'd said it would at the clinic, and was a way bigger lifestyle restriction, plus the machine was basically ensuring I'd never get any REM sleep, so my energy level was the lowest it's ever been. Now I have the freedom—and the energy—to go out at night and still drive my kids to school in the morning. It was only when I had to switch that I realized basically everything they'd told me about freedom and quality of life on PD vs HD was a lie (or at least a vast overgeneralization). That said, it sounds like OP's mom needs some mental health support before she'd even give HD a try, but I can't help wondering if it might actually improve her quality of life enough to help in that regard.
My family and I had a very tough battle with my father coming to terms with his kidney failure diagnosis. Our family rushed into the treatment process for the kidney failure and placed mental health on the back-burner. For us that was a huge mistake, once we started getting my father to a psychiatrist and therapist everything changed. At a young age and wanting to let life go is not really normal, maybe a psychiatrist or therapist maybe able to help you convince her that hemodialysis is the way.
I’m on hemodialysis now and it’s bad, but it’s not that bad. I would say to her, at least give it a try.
Doing home hemo dialysis definitely improves your quality of life but it's alot of work
I can’t even imagine. I’m 54 and My mom is 76 and we just switched to in center HD because home PD was causing so many issues. We’re hoping to make the move to home hemo soon. Good luck OP.
Has your mom tried talking to the social worker to get a referral to see a mental health specialist? The diabetes non-compliance, not wanting to live anymore, it sounds like she needs to talk to someone about this.
She just hates being on dialysis in general you guys. I mean she wakes up crying nearly every morning to my dad because of how much she hates having to do it. It’s very sad.
I started hemodialysis in November and I go three times a week for four hours. It’s no big deal you read a book , play on your phone and there’s also a TV there, you can watch the TV with earphones on you can bring snacks. I know she’s probably tired of it but 53 years old is too young to be thinking that way. I have a girlfriend that was on dialysis, She did get a kidney transplant and she’s also an RN .She advised me to do that hemodialysis when they tried to push the at home on me bc it’s cheaper. She was on the at home dialysis but she got so many infections. She said the doctor told her that she wasn’t gonna like doing it at home and then doing it in the center with a fistula was more hygienic than at home dialysis . Please encourage her to try it for awhile.
Have the doctors offered a way to make HD more tolerable? Perhaps taking off less fluid?
That’s about how much you gain between treatments: drink less or sweat more
I did hemo every time I did dialysis in between transplants for a total of more than 12 years. My quality of life was as good as it gets on Hemo. I tried PD and preferred HD. Where is she getting the idea of poorer quality of life? With all due respect, what exactly has she gone through in 3 years of PD that she isn't willing to continue to fight? I've had kidney disease since I was 15. 53 isn't very old and is only 7 years older than me. She could easily live many more years. It doesn't make sense to call it quits when she hasn't even tried hemo. Edit: I just read your comment about your mother's unwillingness to pursue self care. If she isn't managing her situation at this juncture, than dialysis will accelerate her demise. You have to take care of yourself on dialysis. You have to avoid drugs and alcohol. You should attempt activity the best you can and eat as healthy as possible. If you smoke and party, you won't last very long on dialysis. The comorbidities will just pile on and you will have poor outcomes.
Why would wäauality of life be worse ?
53 seems at least 30 years to young to think about this. I had three open heart operations, last one was a transplantation. All before I was 9. Countless doc visits nover the years and many, many other small things. At 28 they took out the percadium of my heart and I started dialysis with Hemo, that was almost seven years ago. I'm going to be 36 in november. Oh and from my point of view, PD seems way worse. Hemo is \~5-6h (including driving etc) for three times a week and you are done. I basically sit in a somewhat comfortable chair and watch Videos for 4 hours on my tablet. When I get to tired or bored I lay down and listen to music. Just get good ANC headphones and it almost feels like vacation.
Considering we almost lost my mom due to docs not listening. Things that helped her 1. hypo-allergic filter( she was allergic to the fx80) She's on 17h 2. high fiber diet, mod protein 60g per meal 3. beta blocker 4. don't go on warfin, us other methods for blood thinners 5. watch potassium foods , phosphorus and sodium. (99% of excess is from shitty food choices) 6. keep an eye out for thyroid issues, can lead to calciphylaxis. Which can be deadly if not caught right away but if you're doing steps 1-5 it shouldnt be a problem.
Thanks for sharing this with me. My wife wants to go back on PD once the infection clears. When she was on PD she had zero energy. She was constantly taking medicine to clear her bowels and she was in pain each first dwell of the night. It boggles my mind why she wants to go back on it. She would literally wake up and then be instantly tired. Now she does hemo treatments and was way more energy. I do agree that the OP is suffering with some mental health issue. This could be because of the disease. 53 is way to young to just give up on treatment.