Told by Nurse to not research on internet! HA !! WTH ?!

[jessup]

Same nurse spoke to me once and Mum twice - you should not believe everything you research on the internet !!!

This all came about because I made comment that Dad's appetite has improved (he is actually eating - not the same size portions as Mum and I - but the past 5 months he has had no desire to eat at all.  He was virtually forcing food down and then only very very small portions.  He also was nauseous (ah spelling?) belching, diarrhea etc.

Anyway, 10 days ago Dad was told (by same renal nurse) to stop taking Caltrate (one tab 3X day).
In fact they didn't even know he was taking it.
It was prescribed to him as soon as his kidneys were removed in hospital so he's been taking it for 5 months.

So .... I said and so did Mum
"since he's stopped taking the Caltrate" he is looking better, appetite is improving, depression waning etc.."
I also said that I had read other patients comments about binders and how they can feel "sick" taking them and difficulties with taste, swallowing etc.

Nurse said he has never heard of this - nurse has been renal nurse for 7 yrs.

So I googled and even the company/manufacturers say there are side effects.

I'm also really pi#$ed off that when I said I belonged to a support group on line  the nurse reiterated the original comment "be very careful on the internet" and "what sites are you on" and I'd like to see what you are reading"

Mum and Dad are worried that if I "let on" where I get my knowledge they might make Dad do home hemo and he doesn't want that!!

What do you mob reckon I should say and do?

[RichardMEL]

I would say it's none of their business. I think what they're really telling you is sensible enough in that SOME people will look online and do self diagnosis and medication based on something they read online which may or may not be appropriate for their specific situation - because each patient is different. That's not the case with you guys - you're following medical advice and sticking with it. There's nothing wrong with being in a support forum like this - none of us are telling your dad to do anything against medical advice. If they press you for it just say it's a support group for patients and carers and you're not using it for medical advice as such so there's nothing to worry about.

My nurses on the other hand seem fine about IHD and I often print news articles or the like off for them that karol posts (thanks!) and they are interested in that.

It is a pity your lot are not so supportive of your efforts to get educated and find support from fellow patients/carers!!!

[monrein]

First question Jessup, since your Dad stopped the Caltrate what have they given him in the way of binders?   Was he taking it as a binder and what are they using now instead?  

I think your nurse has a point about the internet because there IS a lot of misinformation floating around in cyberspace.  However, it also sounds as though she has a nasty little habit of talking down to you and your Mum and that's a shame.

You can always print off info that you find on the internet if you need to check things with her for accuracy but quite honestly I think you should invite your Dad's nurse to join us here.  She might find it useful to see things from a patient's perspective.  In fact I'm quite sure she would learn a lot and if she'd like to jump in and correct our errors, well, that's all to the good too.

How can they force your Dad to do home hemo?  That seems impossible.  Lots of people can't do their own needles and your Dad can't either if he doesn't want to and doesn't your Mum faint at the sight of blood? if you see what I mean.  If this is a real threat in your view, I'd get a social worker involved and complain like crazy.  

My nurses know about this site and we often talk about how great it is to have this resource for people, compared to years back when we were so much more "alone" in our struggle.   They and I tell as many patients as we can.  

Don't let this nurse intimidate you Jessup.  It's not her Dad on the line and you are doing the right thing by trying to be as informed as possible.  

[jessup]

Thanks Richard and Monrein

Your spot on Richard about my Dad following medical advice.
All I have been doing is asking questions or making statements.

Monrein to answer your ?'s
Firstly - no other meds have been prescribed.  I presumed that the Caltrate was a binder but I don't know now.
So I will ask tomorrow when we go.
Made me realise to get his blood results back too.  Will be interesting to see if there is a change.

Has anyone else stopped binders and felt better?
Or is the improvement because Dad's body has "settled" or got used to (if that is possible) to the whole dialysis life style?

I do think the nurse and there are a couple of others who do speak down to us or get annoyed because we (Mum and I) ask questions.

The last couple of weeks the nurse has mentioned every session about home hemo.  Dad has always said no - they can't handle blood or needles.
Maybe they just want to get Dad out of the clinic because we are proactive and possibly be seen as pains in the 

[twirl]

they can not force him to do home dialysis
I stopped taking binder b/c I had that parathyroid surgery
caltrate made me vomit
but it does not do that to everyone

[monrein]

I take calcium carbonate tablets as binders and they don't bother me at all.  But everyone's different for sure.  Thing is, if he's not on binders then you'll have to watch his blood phosphorus levels carefully.  It's also crucial to take binders WITH meals.  Not a half hour before or after.  With the food itself.  The idea is for it to bind with the phosphorus and stop it from pulling calcium from the bones and teeth.

They encourage home hemo here in Canada too because it is cheaper for the health care system and you can also get more dialysis which is healthier for the patient.  However, it is a choice that is impossible to force on anyone and, obviously enough, many people are not suited to it.

[RichardMEL]

I was on Caltrate when I was first put on dialysis. Yuck to chew that chalky crap, but I didn't have any side effects but everyone's different.

I am surprised there is no replacement binder to have with food. Something will be required as a phosphate binder. I am sure they will remedy the situation if the labs show too high phosphate.

As for Home hemo in a way they probably talk about it because it IS seen as a more convenient option for many patients. I still have nurses at the unit giving me the spiel every so often and asking why i don't do it. I have to point out my poor eyesight and co-ordination would be a real danger with needles.. I'm more likely to needle my cat than my fistula!!! Bessides I have noone here to help with it. Still they try every so often but don't put a heavy word on me. i think they accept my reasons why and know they have to put up with me! LOL. Still I'm lucky and I think most of my unit's staff actually like me (or they just like when I bring in cake!!! )

good luck Jessup!

[thegrammalady]

maybe i'm missing something, but when did the dialysis nurse become a neph. call the doctor and tell him about the caltrate and ask what your father should use as a binder. there are several different kinds and you should be able to find something that doesn't bother him. keep asking questions, tell the nurse no on the home hemo (you don't owe her an explanation) and not to bring up the subject again. if she keeps it up, she has a boss report her. keep researching, if she wants to be an ostrich, that's her problem. the problem is she probably wants everyone to do things her way.

[jessup]

maybe i'm missing something, but when did the dialysis nurse become a neph.

Yeah I agree 

But as some of you IHD family know, things are a bit different up here in the top end (or down here - depending where you are in the world)
You can't make an appt with the Neph.  He determines if he wants an appt. with the patient
The patient can't make an appt with the neph.  Ahhhhhh

Anyway I will continue to ask ?? until the cows come home.

[Ang]

jessup


            as  to  home  haemo,  nobody  can  force that  on  you

  in  relation  to   the  cyber space,don't  tell  the  nurses  what  your  up  to

  just  go  into  dialysis " i've  got  a  couple  of  questions"

  if they  ask  i  was  researching  esrd

  and  i've  come  to  you  for  professional  advice

   i  mentioned  he  internet  months  back  and  was  told  don't  believe

  everything,now  if  i  say  anything  i  mention  i  talk  to  kidney  people from  across  the globe.

[Sluff]

We hear this from members all the time. Richard is right, we are not dispensing medical advice but rather medical  experience from others. The medical professionals don't like this because we are not supposed to be smarter than they are. Glad your Dad is eating better, I think with food will come energy and that he will continue to improve.

[monrein]

Docs aren't all the same though, just like patients.  Mine LOVES the fact that I have some knowledge and always welcomes my questions.  He'll point me to studies that have been done and never talks down to me.  My transplant neph was the same.  I tell them all about IHD and I even told the social worker to suggest it to new patients because "we both know that many will be dead before they ask to see you".  LOL.  He laughed.  I would challenge a doctor who felt uncomfortable about an educated patient and would switch docs if I  felt there was no way to work comfortably TOGETHER.

I'm wondering if it's hard to get nephrologists to work in Darwin.  I mean, I know it's a city and all but it's relatively remote no?  I'm trying to figure why this neph has so much power and such bad practices.

[Bajanne]

My neph, my vascular surgeon and all my nurses are impressed with IHD.  I have never had one negative reaction when I tell them about the group.  Some of the nurses have even had a look, though they haven't joined.
My vascular surgeon called me proudly 'an informed patient' and was very impressed.