OT / Dialysis

My 80 year old Dad has cancer in the tube between his kidney and bladder. It was discovered in December, but had likely been there for a little while. At the moment it's not spread and he's in decent shape.

Remarkably a week last Friday he was given the opportunity of an operation for this coming Wednesday morning. He was up for it until the dialysis nurse came round yesterday and explained the process should he require it. 3 times a week to the hospital for half a day. She said at his age he could maybe expect to live another 1 to two years with dialysis and he'd feel poorly etc. Doctor said he could maybe live another 6 months to 2 years if he didn't have the operation.

He's now got 48 hours to make a decision but not much information on which to make it as they don't have any idea on whether his current kidney function of 26 for both kidneys will mean dialysis for the remaining one when they remove the affected tube and kidney. There's also a lack of willingness for any experts to put a % on any outcome which makes making a decision really difficult for him.

So, has anyone any experience of a kidney op and/or resulting dialysis in his age range? Is it manageable? What's the quality of life like?

Any thoughts appreciated.

 

I haven't I'm afraid, I'm sorry.

I'm sure you've already looked but just in case
https://www.kidney.org/online-communities

 

A long time ago my grandad had a kidney removed aged 81 and lived well for another couple of years without dialysis until something else did for him.
Hope your dad has the same good health without the need for dialysis and hopefully for a lot longer!

 

How horrendous. My thoughts are with your dad and your family. What a choice to make.

I’m hugely reluctant to say what I am here as I’d hate to think I might influence a decision which goes on to be regretted. But it would be unfair of me not to contribute.

We buried my aunty on Thursday, she was only early sixties but had suffered renal failure and had spent a couple of years on three times a week dialysis.

Half day, but you could always write the rest of the day off as she felt crap, and was usually too knackered to do much other than basic function the day after, to then go again the day after that.

Your dad’s decision is a tough one, but if our Tina had her time again she would not have gone on dialysis. (She died of heart failure btw, not kidney related). To say she said wouldn’t have done it is stating it mildly by the way, her illnesses had no effect on the sharpness of her tongue or wit.

If the dialysis was going to extend his life significantly and he wanted to do so, then yes of course it would be wise. But given they appear to have offered a similar expectancy either way, I’m not sure I’d recommend it based purely on what happened to my aunt, which is of course not first hand, personal experience.

I’m also not convinced of major open surgery being the best option for a man over 80 regardless. Another family member, my grandad, had bowel cancer, he had surgery, took months to recover and some wounds never properly healed, he was permanently colostomised as they had to remove too much bowel to reverse the procedure, which he could never adjust to - and regretted having major surgery for every minute he lived afterwards, saying he wished he’d just let them give him radiotherapy treatment to reduce and control it and live out the rest of his life more normally. Did it extend his life? Yeah probably, a year to a couple of years more maybe. I don’t think he wanted them in the form he had to live them though. His was a very different situation to a point but living on dialysis is no bed of Roses from what I’ve seen, and if it was my loved one I’d be wondering whether what it might (no guarantees) give him in terms of length of life is worth the change in quality of life.

There isn’t a right or wrong answer that fits all, it’s purely about what your dad feels is right for him and your family, but I think it’s clear what my view would be.

All the best to you and all your family

 

I don't want to press "like" because the sentiment doesn't seem appropriate. But I did want to let you know I would have appreciated your response had I been the OP, particularly as I can see that would have been difficult for you to write and you might be worried if it was the right thing to do. I think it was.

 

I may have read the opening post wrong but I think it’s saying that there’s only a chance of needing dialysis. If so, it’s more than a straight choice of whether to have that or not. I may be wrong as I don’t understand much about it.

Thank you for sharing that.

 

The dialysis nurse said that it was likely he'd need dialysis. Problem is they won't know the strength of the remaining kidney until the other has been removed. A 50/50 split would lead to the remaining kidney being 14 or so, which is borderline dialysis anyway...

 

I'm sorry to hear about your Aunt, thanks for the reply.

 

I can't help you with the decision that needs to be made but I am sorry for what your dad and you and your family are all going through.

 

No experience or anything at all but you have my sympathy at having to deal with such an horrendous situation. Whatever happens I hope your dad is ok, if that can't be in body then I hope he can be at least happy in his mind. I hope that for you and the rest of your family you can enjoy the time you have left with him.

Also I know I don't need to say this but please remember that whatever you or he decides and whatever advice or comments you make to him there is no wrong answer. If advice is given to your dad by you with the best of intentions then it's the right advice, if a decision is made with the best of intentions then it's the right decision.

 

Thank you. I did nearly delete it for the reasons you elude to, but that would not have been right

 

I clicked 'like' as a gesture of support. I think we're all grown up enough to interpret it in this manner. It is a desperate quandry, but I hope your dad has a good quality of life for his remaining years & somehow gets to enjoy our forthcoming season back in the premier league. Best wishes to you, mate.

 

I don't know whether this will help at all, but my daughter had a kidney transplant at 17. She never had dialysis, but there's no doubt in her situation, her quality of life would've been lowered. Having to be at hospital three days a week, every week, would've meant serious issues with regards to her education & friendships.
I appreciate this is a totally different personal situation to yours, mate.

 

Sounds like a very difficult decision to make. I ve only really known of those on dialysis when waiting for a transplant. If the life expectancies aren't vastly different he may well prefer to spend the time with loved ones rather than travelling too and from hospital and being laid up in bed after that. I'm really sorry for him and your family being in the position where you have such a difficult choice to make.

 

I should have updated this, but it was a bit hectic and the 'How are you doing thread' reminded me of it..

So my Dad shortly after my OP had a kidney test done which showed his remaining kidney wouldn't require dialysis. This was a relief as he didn't want that at all. Also a bit annoyed at the time as the surgeon who was pushing to have the operation hadn't told us of the test and only when asking for more information did the kidney team at Jimmy's tell us.

He eventually had the operation in June last year and unfortunately he had severe delerium following it which was impeding his recovery quite severely. He wasn't in a good way and kept asking for me and my brother.

Eventually we were asked to come and see him (Covid restrictions and all). He was sat up in bed and still confused (he thought nurses were trying to take over the hospital!). Then a doctor spoke to us and said he didn't have much hope he'd live long as his kidney function wasn't bouncing up and the best we could expect was dialysis for a few months at the most.

We went home crushed. Then the next morning I got a phone call from the hospital, another doctor, who told me he'd made remarkable progress and they were taking him off the oxygen and his kidney function had jumped considerably. A day later he was out of HDU and a few days later he was home. It was a bit of a roller-coaster.

I can only put it down to seeing people he recognised and it perhaps shows how badly delerium effects people, especially when you're elderly and have had a long operation. He kept getting flashbacks for months afterwards, seeing faces during the day and bad dreams at night, but they've faded and are quite irregular now.

Still cancer free nearly a year on despite his GP, a consultant and one surgeon all said not to have it done as it would be too much.

Just goes to show.....

 

Just reading my previous comments back....

This was so wrong of the dialysis nurse (not at the hospital). The remaining kidney was stronger than the one they had to remove and they didn't have to remove it to find out, as I said above they just tested the good one to find out...

 

I know it's perhaps anecdotal but does really sound like the importance of family support when recovering was a major factor here. My wife was in hospital through Covid restrictions with mental health issues and all the nurses said when visiting restrictions were eased they saw great improvements in many patients. Your mention of delerium really brought back some of my experiences.
Pleased to hear you have at least come out of the other side in a positive postion.
Best wishes to your Dad.

 

I was pretty poorly with Sepsis caused by a gallbladder problem for most of 2019. I can pretty confidently state that if my wife had not been able to visit, and to advocate for me, I probably wouldn’t be here to tell the tale.

 

Delerium is nasty. He genuinely didn't know if it was a dream or reality. It's very common but they had to sedate him as he kept trying to get out of bed. That then filled him with various drugs, on top of the ones he was on.

I'm pretty convinced just being grounded in reality by seeing us made the difference. It's a shame they didn't explain this might happen before the operation...

 

Brilliant news.
Your story reminds me of at age of 11 my Daughter was diagnosed with Leukemia, we were basically told ‘normal’ treatment would not be suitable and the only option really was to agree to a ‘trial’ chemotherapy.
We went with this option and she had lots of good and bad stages, one such stage we were told by a Dr on a Sunday the medication was not working and we should prepare for the worst.
As you could imagine we were devastated but as we had a meeting scheduled with her actual Dr on the Monday am, chose not to tell her.
At this meeting her Dr started by apologising and the locum Dr on at the weekend had read the wrong notes, picking up the notes of a young girl with the same first name.


Anyway, great news for all of you and hopefully it continues for a lot longer.