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Are you on Dialysis

(27 Posts)
skippykips Tue 13-Mar-18 18:08:40

Hi, posting here for traffic.

I am just wondering if any of you are on Dialysis 3 times a week, and if you miss a session how often you miss them, what are your reasons for missing them.

I am asking for my DD, her dad is on Dialysis and he misses a fair few sessions, but this results in bad health and he becomes to unwell to see her. She is now on week 3 of not seeing him.
When she gets cross at him for not going to Dialysis and keeping himself as healthy as possible his reply is 'well, yes but it is hard'
Is it 'normal' for patients to miss regularly?

skippykips Tue 13-Mar-18 18:10:31


TheVanguardSix Tue 13-Mar-18 18:15:41

I am not but my dad was 3 x a week.
I'll put it bluntly. You feel pretty shit on dialysis, it's true. But missing dialysis is certainly going to make your DD's dad feel way worse. There is also a risk of potassium build up if you miss a session and that, to be frank, is playing with fire.
How old is DD? Could she hang out with him at his dialysis session once a week? I am sure it would cheer him up AND encourage him to go to every session, which he must. I can't emphasize this enough. Missing dialysis is incredibly dangerous.

MatildaTheCat Tue 13-Mar-18 18:21:47

This may help. Bottom line is that over time it’s very dangerous. If the patient is hoping for a transplant they may be considered non compliant and be placed at a lesse priority than a compliant patient.

Not an easy condition to mange and live with though.

skippykips Tue 13-Mar-18 18:44:15

We know how dangerous it is. He has been on Dialysis since DD was 3 years old. She is now 10.
He did have a transplant but after a year it failed.
I think what she wants to know is if anybody is on Dialysis, do they miss like her dad does.
He can't have her tonight due to high potassium- he missed 3 sessions in 2 weeks. It is fair to assume his missed sessions are the reason potassium is high.
She misses him dearly, but wants him to be a compliant patient. He says its not that easy and she can't understand as she isn't having to dialyse.
So she has asked me to post on here, we know kidney failure is far from easy, but to miss sessions just can't be worth it? Is missing sessions the norm or is he just lazy. (Lazy possibly not the correct word)
She just want other people's perspective so she can say 'no I don't personally know but ,have sought information from those who are patients'

Does that make sense?

toffee1000 Tue 13-Mar-18 18:48:13

Missing sessions sounds very irresponsible, to put it bluntly. It doesn’t matter if he feels shit doing it, he’s going to feel even more shit if he misses sessions regularly and eventually died!!

Is peritoneal dialysis an option? My father suffered kidney failure/loss of function six and a half years ago. He was on haemodialysis for three months, and since January 2012 he’s been on peritoneal, which he can do overnight, every night, while he sleeps.

PotteringAlong Tue 13-Mar-18 18:50:51

My dad had daily dialysis overnight before his transplant. When he was in for his transplant and still in the high dependency bit someone got admitted due to complications from missing dialysis. The patient was not well at all.

lougle Tue 13-Mar-18 18:51:35

So it's the opposite of what it seems? You're not trying to justify him missing sessions, but trying to get evidence of why he should be complying with his treatment?

She is 10 years old and she shouldn't be trying to persuade her Dad to comply with treatment. That responsibility is not hers. She has 8 years left until she is an adult, and then, if he survives, her whole adult life could be spent begging him to comply with treatment. Frankly, if he doesn't have it in him to comply, he knows the risks. He does know the risks. Every single time his potassium is high, he will be told the effect of it on his kidneys. He'll be told how badly it is damaging his kidneys, what it's doing to his eGFR. You simply can't let a 10 year old be the person who tries to convince him to save his own life.

NurseP Tue 13-Mar-18 18:54:09

I think missing sessions is quite unusual., unless for a really good reason. He must feel crap!

22esmeweatherwax Tue 13-Mar-18 18:54:46

My DH had dialysis when our DC were both under the age of 5 and he is often a bit lazy about lots of things but he NEVER missed a dialysis session. He had a transplant after 15 months of dialysis and yes living on dialysis is hard but will be made all the harder by skipping sessions.

Twodogsandahooch Tue 13-Mar-18 18:54:46

In the time I spent on a renal unit most patients I came across were compliant and turned up for HD. There were a few who were less reliable, would miss sessions and then end up in A&E with raised potassium and fluid overload at midnight but that wasn’t the norm.

sazza76 Tue 13-Mar-18 18:59:42

Hi Skippy,

Not on dialysis but i'm a renal nurse specialist who has worked on a haemodialysis unit.
It isn't normal to miss sessions at all, its not common and it is dangerous for several reasons. Depending on how much he drinks between sessions he will have lots of fluid onboard that he has no way of getting rid of. It puts his blood pressure up, puts a lot of pressure on his heart and he will start to struggle to breathe.
Secondly his potassium levels will be raised and if he finds a renal diet difficult to stick to it will raise a lot.
Both of these things are very dangerous.
Long term, dialysis three times a week has much better results than short term.
He will feel unwell, out of breath, tired, sick and generally completely rubbish.
It's really tough living on dialysis, lots of restrictions, limited freedom, pain from being cannulated, dialysis itself is tiring, theres the travelling and the boredom of being attached to the machine. I wouldn't judge anyone for not wanting to go every other day, it is definately worrying though.
Hope that helps answer your questions.

TheVanguardSix Tue 13-Mar-18 19:03:47

I don't know what to say really. I find it so sad that your daughter is burdened with his irresponsible attitude towards his health. I don't wish to be hard on the guy because, as you know, dialysis sucks and the fact that the transplant didn't work is a bummer. I can't help but wonder if he's just giving up. It's depressing, dialysis, especially when the hope of a transplant offering him a new lease of life has failed.

You can lead a horse to water, but you can't make it drink.
Your daughter can't really do anything. And I feel sorry for her and for the fact that she is powerless in a situation she would so like to change. Poor girl. He's her dad. And she wants him around. I get that. But very sadly, if her influence hasn't worked its magic by now, if her very presence in dad's life isn't enough to make him compliant, then it's not looking too promising.

Can she join dad at any sessions? I assume they're during the day while she's at school, so probably no, right?

It's a sad situation. I'm sorry for you all. It's tough. It really is.

skippykips Tue 13-Mar-18 19:04:12

peritoneal Dialysis isn't an option for him.

She isn't trying to convince him to go. She is just trying to sort out her head and how he is feeling.
Her anger towards him when he doesn't attend is so high. She wants to know if she is being unfair to him for being angry.
Its a hard situation for me, people have said if he is going to be non compliant therefore gets so poorly for weeks on end then I shouldn't let him have access. I kind of agree. However my 10 year old is as mature as a 14 year old and has a very strong opinion about this. She has said if I do that and he dies then she may never forgive me for taking away that little time she had with him. She loves her Dad, she idolises him. She just wants him to go to Dialysis regularly.
She doesn't want to speak with him on the phone tonight as she feels let down by him.

skippykips Tue 13-Mar-18 19:20:14

I spoke with him today over the phone, every time I have told him that being compliant must be easier than the after effects of being non compliant he gets angry at me.
He sounded so unwell today. I could tell his face was swollen from fluid. He had actually been called in due to high potassium.

I feel so lost as I have no idea how to deal with this for DD. It has gotten so bad the police actually phoned his brother as nobody could get hold of him. He was fine, he just decided not to go!

DD has been so strong in the past! All her hopes and dreams came true the day he got the match. When it failed I saw her little heart fall to pieces! It wasn't his fault, of course not, but he could be making things easier for her now!
She has said to me that her dad making the choice not to go is like him making a choice not to see her grow older, that sometimes it feels like a rejection from her own dad.
I have said to her maybe she could take a step back. Her reply was 'and make my dad feel as sad as I do, I couldn't do it mum'

Him not going doesn't just affect him, it affects his little girl! And she is so bloody strong, she makes me so so proud! If only he could see how amazing she was and how angry/hurt she gets when he doesnt go - isn't that supposed to push him into going every session?

sazza76 Tue 13-Mar-18 19:30:45

Have you looked into counselling for your daughter. It might help her to talk it all through with a counsellor who can help her with coping strategie.

toffee1000 Tue 13-Mar-18 19:45:20

Well, if he gets ill from missing and then gets angry at you for calling him out on it (WTF??) then he’s putting himself at risk. If he wants to risk getting even more ill and dying then it’s in his hands. I gather you don’t live together, so it’s his call. You cannot make him go.
He sounds like a complete idiot, screwing over not just himself but his daughter too.

skippykips Tue 13-Mar-18 19:45:36

@sazza76 yes I have looked into it!
I even took her to the drs to speak with dr to find the correct type of counsellor.
Dd is dead against it. She said she doesn't want one. I have told her it is probably the best way to deal with things, being able to talk to someone could help her balance her emotions'
She said no! I told her the option will always be open.

As I read this back I can imagine you all thinking 'my gosh skippy lets her DD have a lot of responsibility at 10 years old'
It is known that my DD isn't the average 10 year old. I can't treat her like a 10 year old as she doesn't know how to be one. Its really really sad isn't it!

sazza76 Tue 13-Mar-18 20:45:40

I don't think that at all Skippy. All kids are different and mums know them best, it's not for anyone else to judge. Your all in a difficult situation, sounds to me like she's got a great mum to me.

skippykips Tue 13-Mar-18 20:58:20

@sazza76 I don't feel it sometimes. At 10 years old I should know how to protect her. I should be able to kiss away her pain, it should be pain after falling over not emotional pain that her dad is ill and he isn't helping himself!
As much as I feel he is letting her down, when they are together they have such an amazing bond! She lights up when she sees him. He doesn't see her daily and so couldn't possibly see what she goes through daily just to keep herself going! I try to tell him however, it falls on deaf ears, or he is in denial!
As her mum it is my job to create a happy childhood for her! This is out of my control though. She knows that I have never and will never let her down - its the only security I can give her.
If I had a magic wand I would magic her dad a new kidney, not for him, but for her!
He got ill when she was just 6 weeks old, he started Dialysis when she was 3! I just hope one day he gets another match, (after showing he can be a compliant patient) and she gets to see her daddy healthy for the first time!

Jeffstar79 Tue 13-Mar-18 21:21:21

Dialysis is so tough its hard to comprehend how shit it can make you feel. Is it possible he's got to the point he can't face carrying on with it?

tobee Wed 14-Mar-18 00:32:12

Has he not got psychological support from the renal unit from his hospital? Sounds like he needs it ASAP. Dh is on dialysis and was seen by a psychologist at hospital when initially diagnosed, and several times after that. He can take them up on it anytime. They made sure I saw them too and the offer for support is open to me too.

I feel very sorry for your dd. The hospital may well be able to offer her support also.

There are also good support groups online like I Hate Dialysis. It's a bit American but is a good place for patients and family.

Downtheroadfirstonleft Wed 14-Mar-18 16:07:33

Skippy, I say this with all support and care. You need to make the decisions re what your daughter needs. If you think she would benefit from counselling, then get her to give it a try. I'm sure your daughter is wonderfully mature, but she is only 10.

I was a v mature 10 year old when I needed to deal with some stuff and I'm still paying a (manageable) price for it.

You sound an amazing Mum.

skippykips Wed 14-Mar-18 18:37:18

@Downtheroadfirstonleft I have already tried, the Drs have tried. She sees it as pointless. I have begged her to give it a try. She said she would, then when it came to going drs she said 'whats the point, my daddy is ill he will one day die, i know this snd sitting here talking about it will mot make it easier, yes it might make me cope a little bit easier but i dont want to cope easier i want to feel the emotions i need to feel to deal

skippykips Wed 14-Mar-18 19:18:45

Posted too soon
...with whats going on and whats going on in the future'

I am not giving up, i will keep trying. I am not the parent to force a child into doing something though, i can try and persuade her. I will never give up!

Her dad isn't showing signs of a big change from his past. He was lazy, he wouldn't go work regularly. He was in and out of jobs like a yoyo, thought working for 6 weeks was an achievement!
Now it seems he has taken that into his Dialysis. I get Dialysis must be really shit. I could not imagine having to go! However this is his life, his little girls life!
I just wish he went to EVERY session! When he misses 1 session it means he is too poorly to see her for 2-3 weeks after! Surely that just isn't worth it?

The poor girl is studying for her 11+ at the moment. She really wants to go to grammar school and is pushing herself so hard into that! I am happy with whatever school she gets in to. However grammar school has been her dream since she was 6 years old! She is struggling to balance her emotions between 11+ stress (she puts it all on herself) and her dads health and in-compliance (is that even a word?)
The poor poor girl needs to be a 10 year old! I feel like I have failed her in allowing her to grow up too quickly! Does that make sense?

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