Emotional health in the pre-dialysis patient

[MooseMom]

I have found this brilliant website, www.homedialysis.org, (some of you probably already know of it).  Their forums are fantastic because they are moderated by experts; there's a nephrologist, a cannulation expert, a social worker, a dietician and a PD expert who will actually answer your posted questions.  The nephrologist is an Australian, so he is not an expert in NxStage but knows enough about it and American modalities to be able to offer an educated reply.  He often travels to this country, so he is not totally in the dark in regards to dialysis in the US (he is not a big fan of the way dialysis is offered in the US, but that's another story).

Anyway, I just joined the forum and asked about how he handles anxiety in his pre-dialysis patients.  Here is a link to the conversation...

http://forums.homedialysis.org/showthread.php/2677-The-sword-of-Damocles

I don't know about you, but I am green with envy that in Australia (at least in Dr. Agar's practice), there exists "pre-dialysis coordinators" and "pre-dialysis educators" and "pre-dialysis counsellors"!!!!!!!!!!!!!!!!!!!  OMG, that would be so useful to me and to, I'd bet, lots of other pre-dialysis peeps.  I've been offered NOTHING like this.  Have any of you in the US EVER been introduced to a "Pre-dialysis" anybody?  For you in Australia, have any of YOU seen anyone like this, or is this maybe a new thing or an innovation limited to this one specific doctor's practice?

It just seems to me that we all get bogged down by the numbers and the machinery and the osmosis of dialysis and not the rest of the patient, ie, his/her soul.  And since dialysis/transplantation is a long-term treatment, you'd think that more attention would be paid to a patient's emotional wellbeing.  A reasonably happy patient...a more informed, supported patient...is going to be more likely to be compliant, but perhaps that's just too much like common sense.

[woodsman]

My emotional health came into question last night and today. This is what i came home to after working 12hrs
I was so tired and had to move all this snow then in the morning it was back once again.

When i got home last night and when i got up this morning and the snow continues..




EDITED: Removed Links-Reformatted Pictures - Sluff/Admin

[Marsh]

OH MY!!!  Don't miss that snow!!  Formerly of Michigan, now in Florida.

[boswife]

holly schmolly,,,, i couldnt do that anymore.  Makes me tired to just look at it.  BEAUTIFUL!! I love it, but i'd want to be able to just play or sit by the fire, not have to go out in it. 

[chook]

WOW! Looks so pretty but what a lot of work for you!
And MM, as an Aussie - I never had pre-dialysis counselling although my neph was very supportive and the D unit good too. BUT I  do live in a 'remote' area so maybe Aussie city people experience it. And I guess,too, that I projected that I was coping okay so maybe it wasn't deemed necessary.

[MooseMom]

And I guess,too, that I projected that I was coping okay so maybe it wasn't deemed necessary.

You know, chook, I've done this, too...this business of seeming to be so on top of everything that it comes as a surprise to people if they see me struggle.  The few times I've mentioned anxiety to my neph, he seemed astonished.  This is my fault, really.

It is so damned cold here in Chicagoland...it's 10 degrees right now.  And it's going to get colder!!  Woodsman, I'm not surprised you nearly went ballistic at all that snow.  I hate shovelling...I've not gotten used to it.  That's when I play the kidney card.  "My kidneys are too damaged for shovelling!"

[galvo]

Yes, Mom, in my part of Oz, I had pre-dialysis seminars where we were adressed by nephs and nurse educators. There was also a panel of Dialysis patients of all types, HD both in-centre and at home, PD, owners various types of fistulas-arm, leg, gortex etc. These people told us their individual stories and then were available for individual chats. And, most importantly, there was tea provided. And biscuits!

[Sluff]

Me and Patton used to shovel and snowblow and Plow approximately 21 driveways and parking lots every snowstorm up here in Wisconsin. After awhile it got to be too much. We went down to 18 and then I plowed as many as I could but Patton had to clean them up and shovel and blow the sidewalks and culverts when ever the plow would breakdown which was almost every snowstorm. He worked hard and he saved my butt many times.

[Deanne]

I used to like shoveling show! I liked the quietness of new-fallen snow, before people have their cars back out, when the only sounds outside are the scraping of shovels and the shush-thunk of the shovel-load of snow. I don't know if I'd like it anymore or not. I left snow country almost 20 years ago.

Sluff, that's quite a kid you have there! I bet you're very proud of him.

[MooseMom]

Yes, Mom, in my part of Oz, I had pre-dialysis seminars where we were adressed by nephs and nurse educators. There was also a panel of Dialysis patients of all types, HD both in-centre and at home, PD, owners various types of fistulas-arm, leg, gortex etc. These people told us their individual stories and then were available for individual chats. And, most importantly, there was tea provided. And biscuits!

And they say Aussies are uncivilized...

Tea and biscuits!!  You're getting soft like the Poms!

[Scarlet]

hey there MooseMom, I had no idea that in the US you do not Pre-dialysis appointments. Here in Winnipeg they do what is called an "in-take" appointment and from what I have been told, as I am not originaly from Winnipeg, you get one once you are 1-2 years from dialysis and a Nephrologist starts folowing you in clinic.

First you have a quick appointment to get your blood work and basics down and then they book a follow up "in-take" appointment. This means that you have an appointment that is booked for ~3 hours. You meet with the renal clinic educator, the Nehprologist, the Pharmasist, a dietitian, a Social Worker and possible even a Vascualr Surgeon, to talk about a fistula.

It is the one stop shopping for all of your questions.  I had my initial appointment last month and I go for my "in-tke' in about an hour.  We will also start to look at my options for live donation. If my GFR is down to 20 or lower we can beging the testing on Russ to see if he is a match. 

We get a binder that is put out by the Canadian Kidney Foundation that has all the basic info in it, if this kidney failure thing is new to you, unlike me being 3rd gen with PKD, this binder gives you a lot of great info. 

Here is the link to the manual that you can print off:

http://www.kidney.ca/Page.aspx?pid=394

[MooseMom]

I don't want anyone to think that we get NO pre-dialysis care.  It just doesn't seem to be particularly organized or standardized.  The quality of pre-dialysis care seems to depend solely upon your nephrologist.  I happen to think that I got good pre-dialysis CARE but not necessarily any good pre-dialysis information, at least not from my neph.  I'm sure he would have answered all of my questions, but I personally found it easier to go online and put together my own pre-dialysis programme which by nature is going to be a bit more hit-and-miss. 

I'm lucky enough to be pretty well educated and to have access to the internet, but many pre-dialysis patients do not have these advantages, so what do they do?

My main point is that it seems that "pre-dialysis care" doesn't address psychosocial issues.  I know that some programs do (like Kaiser), but that doesn't seem to be the norm.  I could be wrong, though.

[Scarlet]

I know from my point of view the emotional/ mental issues have been more concerning then the physical issues..and in today's world were even the medical profession admits that depression causes ACTUAL Physical ailments, i am distressed to see that attention to these factors are not comonly confronted...

[MooseMom]

I know from my point of view the emotional/ mental issues have been more concerning then the physical issues..and in today's world were even the medical profession admits that depression causes ACTUAL Physical ailments, i am distressed to see that attention to these factors are not comonly confronted...

Me, too.  I've never had a conversation with my neph about anxiety or about my emotional health.  Maybe I should have been more pro-active, although I did take it upon myself to see a psychologist (that's a whole 'nuther story).  But it would be nice if doctors who have newly diagnosed a patient with a deadly, chronic illness might address these issues at the outset.

[Stoday]

They passed the needles round on my pre-dialysis group session.

One bloke fainted when he saw them. I guess his emotional health took a sudden dive. 

[MooseMom]

They passed the needles round on my pre-dialysis group session.

One bloke fainted when he saw them. I guess his emotional health took a sudden dive. 

That's not funny, but I laughed anyway.  Bad MooseMom.

[chook]

MM, I too laughed (out loud) at Stoday's comment - I KNOW it is not that funny but somehow it tickles anyway. What a shock for the poor man. I am heading for 6 weeks of haemo starting next week and have been trying to toughen myself up (terrify myself witless) by watching haemo runs on Youtube. And I STILL laughed. Go figure!

[RichardMEL]

Yes, Mom, in my part of Oz, I had pre-dialysis seminars where we were adressed by nephs and nurse educators. There was also a panel of Dialysis patients of all types, HD both in-centre and at home, PD, owners various types of fistulas-arm, leg, gortex etc. These people told us their individual stories and then were available for individual chats. And, most importantly, there was tea provided. And biscuits!

This is almost exactly the experience I had in 2003 - yes including the tea and biccies

Incidently I have volunteered to the dialysis AND transplant co-ordinators should they need someone to attend as a current/former(whatever is appropriate) patient to help "newbies" I put my hand up if I can.

All the modalities of treatment from PD, hemo, home hemo through to transplant were discussed - both pros and cons. We were shown (passed around even!) a 15guage hemo needle (scary!) and shown a 4008B machine (sad, I remember this!) and like Galvo says a panel of patients available to talk to. In the transplant seminar I attended (a seperate one for those on the list or looking at live donation) they had transplantees - including one whoose failed (brave soul!), one who had an "easy" live donation,and one who had complications with their transplant - I think to illustrate several possible outcomes.

I thought they were all very good, organised well and informative. Unit social workers were made available (via contact cards etc) for follow up if we felt we needed them.

[Bruno]

Yes, MMum, in Sydney Australia we get the full whammy...in fact, the nurse who I saw once by myself and next with my wife was one of the loveliest lasses I've ever met...so lively and outgoing, so very very good in the intro role. I almost felt obliged to go on dx just to make her happy (I'm joking).
Your other point about John Agar is so on the money...I think he runs the best service for CRD people in the world and the city he works from is a provincial city in the State of Victoria...well, maybe more of a satellite city, so he is a genius...I emailed him with a problem and got an answer the next day.
And his site is so helpful, in fact, in terms of usefulness I'd rate it No.2 in the world..behind IHD, of course.

[MooseMom]

MM, I too laughed (out loud) at Stoday's comment - I KNOW it is not that funny but somehow it tickles anyway. What a shock for the poor man. I am heading for 6 weeks of haemo starting next week and have been trying to toughen myself up (terrify myself witless) by watching haemo runs on Youtube. And I STILL laughed. Go figure!

I'll be thinking of you next week; come by and tell us about the experience, OK?

I don't think there are too many more frightening experiences than starting dialysis.  It's such a life-changing event, and I don't know if anyone can REALLY prepare for it.  We can read about it, talk to people about it and even watch people do it, but none of that is going to accurately foretell exactly how dialysis will affect your body.  You watch haemo runs on YouTube?  That sounds like a jolly good time!!

[chook]

Will try to create new thread (under the haemo section) and tell all about my busy last few weeks.
good on you, Richard, for offering your knowledge and experience. When I'm back to normal I am going to try and get more info out there to the pre-D patients if the unit here in Dubbo will support me. I really feel that the information should be offered, and that patients shouldn't have to ask for every little bit of info. For instance, I have made myself a shower belt that holds my PD catheter whilst showering. The tape always seemed to come unstuck. All PD patients probably get around to this but it should be on a list of things to make PD life easier.