New here ... for my nan

[aussieamelia]

Hi,

I’m Amelia from Australia. I stumbled across your board while searching for an Australia kidney forum (which I guess we don’t have) as my Nan has kidney disease. I’m not her primary carer, however those that are unfortunately aren’t making much of an effort to educate themselves about what may lie ahead, so I’m trying to help out by giving them information, helpful websites etc.

The reason I’ve chosen to join the forum now is that I was waiting until she had made a decision as to what treatment option she would decide on. She has had alot of specialist appointments recently and after her visit with the renal social worker a few days ago she has made the decision to not undertake dialysis and instead look at conservative care. I’m hoping this is somewhere I can get a bit of an understanding of what lay ahead for her, and for us as a family.

Looking forward to learning from you all x

[cassandra]

Welcome to the site aussieamelia

       

You'll find some more Aussies here.

Take care, Cas

[Poppylicious]

  Amelia.  You'll find a lot of support (and some fellow Austalians!) here.

[galvo]

G'day, Amelia.  A true blue here. Most of us on D were hesitant, reluctant, and hadto be dragged screaming to accept D. I know I was; I even had an interview with the hospice people! At the last moment, I agreed to HD and had a catheter shoved in my neck. So began the D adventure. The interesting thing was how much better I started to feel in a short space of time, and have generally felt so for the last 4 years.

After any visits with social workers, renal or otherwise, I feel like reaching for my revolver! 'Conservative care' is a euphemism for death, and that is a pretty final choice. Buit it is Nan's choice. I would like to think, though, that she was well informed before she made such a choice.

Okarol just posted a very interesting US report about life expectancy for elderly males on D. And obsidian(?) pointed out how comordities have a serious effect on life expectancy. So, if you don't mind telliing us, how old is Nan and what is her health situation including how far progressed is her kidney disease.

Now you have joined us, you will find that a) we are a very friendly family , even though like all families, there are the occasional blues! And b) there is so much knowledge of kidney disease and Dialysis, all your questions will be answered. Ask all you like. No question is too simple or silly. You should also avail your self of all the knowledge that you can acquire by going through this site.

I'm glad you have joined us. You are most welcome. And I think you have a kind heart to care so much for your Nan.

Keep in touch!!

[Sue]

Hi Amelia - Welcome to IHD I am in Perth WA

[RichardMEL]

Welcome Amelia to IHD 

First of all - thank you so much for joining and wanting to find out more about this world of ours and wanting to contribute more to your Nan's care. That is very sweet and loving, and I salute that effort.

It's sad to read you comment that those around her who would be caring for her (would that be one or both of your parents, or your Nan's partner?) are "not doing much" to help educate themselves - that is sad to read because education - both by those around a patient, and the patient themselves is paramount in how you deal with this terrible disease. Again thank you for wanting to do and learn more!

I'm interested in if you know what has made your Nan make this decision to not at least try D. Do you think it was things the SW said? Or a combination?

I'd be willing to be a lot of it is fear of the unknown.. and maybe other issues with possibly other health issues she may have (do you know of any?).

Without knowing more of course it is very hard to say, and I am hesitant to write more for fear of sounding judgemental or making assumptions that an outsider can possibly make with limited information.... but I will comment that often it is the unknown and scary nature of what dialysis, of whatever treatment form, may ential and what it may do to one's life.

This must be very difficult for you, and the whole family, emotionally - not only with her current decision, but the whole situation with kidney failure. It can be very confronting, and a shock.

If you talk to her about this, perhaps try to not try and push her to change her mind so much, but still I would try to say to someone, whatever the situation (unless there was obviously no point) to at least give it a go. Give it 3 months. Going onto dialysis does not have to mean 'the end" per se. 10 minutes on this site should prove that to anyone!!! Changes yes, things to get used to, struggles.. no doubt... but I would say try it at least and then decide how you wish to proceed.

I am a firm believer in each person's right to make an informed choice about their own body and life, but with something like this I also feel that this decision literally is life and death, and one needs to be absolutely certain, and hopefully tried all the options first. I suspect all the appointments with specialists and information and perhaps alarming test results, prognostications and so on have been very overwhelming to her and this should also be taken into account.

Anyway welcome - hopefully we can help answer any questions you have, or at least help you support your Nan, whatever her choices are.

best wishes!

RichardMEL, Moderator

[aussieamelia]

Hi again everyone,
Sorry it's taken me so long to pop back in - I've had a few ongoing health issues of my own that's keeping me occupied, and I also had a bit of trouble logging back in - but I finally got that cleared up.

I appreciate everyone taking the time to reply

RichardMEL - since my last post my nan has really closed up about anything to do with her health - she was always one to talk your ear off about how she was feeling so the entire family feels a little in the dark and everyone seems to have heard different things so it's a little like Chinese whispers at the moment.

She is in her early 70's, type 1 diabetics, heart issues (she had a triple bypass about 15 years ago), she has an aneurism in her stomach and still smokes. She has indicated to us that her doctors seem to think that with all that going on she will have a stroke or heart attack while getting her fistula/port (forgive me if I've got the terminology is wrong) which has scared her.

She also indicated that she has been told that if she starts dialysis and then decides to stop she will die within days, where as she thinks if she doesn't start at all she will have longer to live.

I guess the hardest thing for me personally is that she recently told me the main reason she decided against dialysis was because of my children. She has been told that when she starts she will be very tired and likely sleep a lot of the time and she can't bear the thought of me visiting with the kids and her being too tired to see them.

The only good thing is we have finally persuaded her to see another kidney specialist and she has an appointment this week. We are told this specialist is a lot more sensitive and personable than her current one (whom she doesn't like) so perhaps he will have a more positive outlook for her

[Darthvadar]

Welcome to IHD, Aussiemelia...

You'll get lots of information and assistance here...

Post often, and enjoy yourself!....

Darth.... Moderator...

[aussieamelia]

Should also add ... Kidney function around 12 a few months ago

[RichardMEL]

Amelia, thanks for responding even after a bit of time.

It's a tough position you and your family (and your nan!) are in. I do feel for you. I can see this from various points of view and I have several, actually conflicting, opinions on this.

One core issue seems to be a fear of "maybe's" or stuff she's "heard" about what will happen, either with the access (fistula, and yes you got that right - or port for a catheter) surgery, or once on dialysis. In respect, her notion to not start D to prolong her active time with you and specially her grand kids, is a very noble, sweet and selfless one.... and I can understand that point of view.

However she doesn't KNOW what will happpen to her - and frankly nobody can really know - many people's experiences once on dialysis can be different, and surprising. Even I, who was on D from the age of around 35-40, can't compare my experiences with whatever your nan may experience if she tries - I have a reasonably healthy, non bypassed heart, I don't smoke, and I'm not 70 (though sometimes feel like it!) but I *can* say from meeting plenty of patients over the years, that you can't assume it will all be sleep all day kind of thing.

Yes, hemodialysis (for example), can take a lot out of you - no question - however most people tend to find the day AFTER treatment to be relatively normal activity and energy wise. Again, no guarantees there for your nan on what she may experience (if she goes there), but there's also no reason to think it will all be bad. The other point is that being on dialysis will extend her time to spend with the family, your kids etc.. potentially by years. She may feel they don't want to see her "like that" (or she doesn't want to be seen) but if she goes untreated it's guaranteed as she declines in health further, she WILL have little energy, sleep more etc anyway.

re the surgery, it's a fairly minor surgery to have a fistula or graft created, but the smoking and heart issues are not trivial given the load on the heart having a fistula can take (I had a nephrologist just last week stop me and comment on my own fistula and mention 20-25% of my heart was working at keeping that going).

Here's an idea to suggest.. what if they try her with a chest cath for dialysis - the surgery is (I think, but I may be wrong) similar but not as hard on her, and she hooks up without needles so easier. Let's say, when the time comes for D, she tries it with a cath for 3-6 months. See how she feels with it. If she feels more or less tired than she imagined. How she does with it etc.. then make a further choice....

I would also suggest the obvious - that she try to cut down or stop smoking, but I'm sure at the age of 70 that's not really going to be an option.


... and why should it? Here's my conflicting personal view. She's 70. she's had a good life(hopefully!!), she's raised the family, and met your kids etc. I do believe at a certain age people should have a right to choose what they want to do with their lives, their bodies and so on. Sort of after 40 years of smoking(or watever) what's changing that now really going to do for her except make her more miserable due to the addiction of smoking and the pleasure of having her fags. I'm not a smoker, but I understand enough about it to know there is a comfort there, and at this point in life, with her health, it's probably more harmful emotionally to put pressure on to stop that.

And that, in my view, extends to her feelings about D. It's scary, and there are risks as discussed. Maybe her idea (which seems noble and selfless at first glance) is the right one for her. Who can say? Certainly not me. Unfortunately there are so many unknowns here.

I would still encourage her to give it a go and see what happens rather than focusing on "maybe's" - I know plenty of "oldies" on D who are still very actiive (I just met a gent on hemo who went up to Sydney for a CKD workshop I was invited to, and he would have been perhaps in his 60's, and he was doing just fine!) and do OK with D. of course I did see others who did not do so well.. I would never deny that. Everyone is different. Me, I'm a positive thinking sort of soul, so I like to look to the potential plus side of things.

I do think it is really good she is willing to see another neph and have that 2nd opinion. That's a positive for sure. It is difficult if she's not sharing so much about where she is at with you all - but I suspect that could be a bit of pride, of fear, of admitting things may be declining more for her and so on. I don't know.

It's still lovely of you to care and want the best. I hope she has further thoughts post this next appointment.

[aussieamelia]

Update from her appointment ...

Firstly she really like this new nephro which is fantastic. Her last wasn't very supportive or forthcoming with information so this is really good in terms of nan keeping appointments and being honest with this new one (nan tends to keep quiet if she is unwell or suffering so as to "not rock the boat")

She was told that she isn't a candidate for a fistula or Peritoneal dialysis. Her only option is a haemocath, and as there are no chairs available in our town, or the 2 nearest, it's looking like she would have to travel to a hospital 2 hours away, but if that's her wish then it's totally doable.

He did tell her that a recent study on older people who are not a candidate for transplant but decide on dialysis usually only live a further 2 months more than those who choose not too, and he stressed to her it's not just dialysis - it's a total lifestyle change and she would have to strictly stick to it.

He explained they dying processed from kidney failure, talked to her a little about palliative care and what we should expect as a family. He also took her off about 5 of her current medications as they were being taken to prevent things happening in 5-10 years, and obviously she doesn't have that long (cholesterol tablets etc)

My mum went to the appointment with her and she said all in all it was a very positive appointment and they got tonnes of information. He will see nan again in 1.5 months and he wants her to use this time to think hard about whether she will start or not, but we are pretty sure she will decide not too.

I'll keep popping back in and doing updates, and thanks to everyone who replied.

[galvo]

He did tell her that a recent study on older people who are not a candidate for transplant but decide on dialysis usually only live a further 2 months more than those who choose not too, and he stressed to her it's not just dialysis - it's a total lifestyle change and she would have to strictly stick to it.

I can tell you that this is absolute nonsense. Nan either misheard or the neph has gone bonkers!

[RichardMEL]

I'm with Galvo there!!!

I read that and was agog that someone would say that. Still, if she (and your mum) have lots of info then maybe this study is referenced, but sounds like rubbish to me.

I can assure you I have known plenty of older patients who have lasted DECADES on dialysis, and that would not be the case without it.

Of course her individual situation is unique, and it's despairing to read she can't get a fisrula or do PD? that really does limit things and I can understand the general view from that point of view, but goodness.... it still seems wrong somehow.

Also the issue of where to do D and no chairs being available.. well that could well change over the next few months, but that is also a worry too.

How o YOU feel about these developments Amelia?

[Poppylicious]

He did tell her that a recent study on older people who are not a candidate for transplant but decide on dialysis usually only live a further 2 months more than those who choose not too ...

Seems a bit strange to me, too.  I do know that when Blokey used to go to appointments he was very selective with regards to what he heard the neph say.  I went with him once and when we left it became apparent that he'd only heard the negatives and hadn't heard the 'buts ...' or the positives.  however, fabulous news that she likes this neph.  That will be a HUGE help! 

*huggles*

[aussieamelia]

How o YOU feel about these developments Amelia?

In all honesty, I'm happy if she is at peace with her decision - but I know in my heart that she wouldn't/couldn't stick to the dialysis diet without someone watching her like a hawk and monitoring everything she ate and drank, and with that being the case then dialysis is pretty pointless. She is diabetic and doesn't watch her sugar levels now, so I doubt the kidney diet would be much different.

I'd love for her to be around for another 5/10/15 years, but I also believe that everyone has the right to choose their path, and I will respect that and support her in any way I can. It's hard knowing she won't see my little children get bigger, and she is my last living grandparent so that's hard knowing we will loose her sooner rather than later, but right now we just have to make the most of the time we have left 

[RichardMEL]

You're a caring yet pragmatic person Amelia. I think your attitude is perfect.

best wishes,
richard

[kristina]

Hello Amelia...

I just want to send you my good luck wishes and all the best from Kristina.