A hard question to answer … again!
‘Reasonable expectations’ … well, to be honest, that varies with each and every patient. Some are old and have multiple co-morbidities (which is ‘medical speak’ for lots of other things wrong with them). Some are long-weighed-down by the vagaries of life - beyond and above their CKD and dialysis alone. Others - whether old or young - are, thankfully, more vibrant, and are less battered by life, circumstance and disease. Some ache for better, some slip easily into minimalist shoes and seek (nor, to be truthful, want) anything more. Some embrace all we can suggest and provide, yet still seek more. Others refuse point blank to be led, cajoled or persuaded to anything, and refuse ‘interference’. While you may think this cannot be so, it is. We humans are a complex lot and what is a reasonable expectation - no, a fervent goal - for some, is anathema to others. Attempts at help and encouragement can be seen, by some as interference and proscriptivity.
So … what I guess I am trying to say there is that each patient is impacted by their CKD and/or their dialysis, and/or their other ‘co-morbidities’, in different ways and with unique lifestyle implications.
A ‘reasonable expectation’ must be … has to be … the very best that can be delivered to and for each individual patient, according to that individual patient’s capabilities and potential. Oh, but that is a waffly statement … I know it is … but the spread of potential, possible outcomes is so huge that it is impossible to be more specific.
I try (and I do not always succeed as well as I might - or put in the hours needed to achieve the outcome I should or could for each patient) … but I do try to work with a patient to understand their individual goal(s) and then work towards them. It might be to run a marathon, or return to full or part-time employment, or it may be simply to walk each day to the back porch and sit in the sun. As goals vary, so too do reasonable expectations.
So, a definition for a reasonable expectation is to achieve a level of rehabilitation - a key word - that achieves at least as much as the patient wants - or thinks he/she can achieve … and then a little more. And, after that ‘little more’ … a little more again.
But, I also know that many will not get ‘there’ … will be beaten by the constant ‘two steps forward and one step back’ effort of living with dialysis. It is a battle. It is a battle that must be tempered by compassion and reinforced by understanding (and good humor wherever possible) - and I hope most of us try to get that right, more often than not.
As I think I have discerned, you know (clearly) what you want, and you plan to get it … and that is health and well-being to the max you can achieve. Good - and I wish it were always so … but it is not. Would that there were more MooseMums!
Sadly, many would (still) simply send you to a facility - few (or no) questions asked - for 3 x weekly short hour, horrid dialysis. I find that sad. Fortunately, I know many dialysis docs in the US and elsewhere who do not believe that to be the right course. The US has many wonderful, caring and compassionate nephrologists who work their butts off to change a system bogged in inertia. But … we ain’t perfect either. No-one is.
Here in Australia, we do try to ‘sell’ the ‘home-is-best’ model first and foremost. Our regular education days do not feature talks and exposure to facility patients, but to home patients. Our home patients are our best advocates … and they like to advocate … and we like them doing so! Facilities are for those who go home but then fail (and here that is only a few), or for those who, for one or more reasons, can’t ‘do’ home care. Nationally, well over a 3rd of all our dialysis patients dialyse in the home. But, that still says that the majority are not. It is impractical to get every dialysis patient home. As our dialysis population ages and has ever-more co-morbidity, that impracticality increases. But, for those who can, they should. Both PD and HD. And we must facilitate that transition to home, in any way we can.
As for an expectation that a dialysis patient must feel ‘lousy’ … while co-morbidity may lead to that (and that’s sad but true), dialysis itself should not!
Good dialysis should be restorative. It is restorative if it is applied in such a way that it is as unobtrusive to lifestyle as possible. It is most unobtrusive if it is done at a time when the patient doesn’t want to be doing something else (eg: while sleeping). It should be delivered gently … and that means slowly … and slowly means time … and time means at night. And it should be administer as often as is tolerable - remembering that tolerance varies, patient to patient.
Is that possible for all patients … of course not. But for those who can … the one obstacle that should never stand in the way is their nephrologist.