Dear Tami … how to answer?
I am finding it difficult because I actually have very little information here.
While you are (perhaps) understandably focusing on the UFR, it is interesting to me that your blood pressure problems start so early in your dialysis run.
While I can probably make some educated guesses about some of the missing information: you are young and have a ‘primary renal disease’ (eg: APCKD) rather than a systemic disease (eg: diabetes), I do not know these things. But, I can take a guess - and it is just a guess - that your heart is in good shape (not a certain assumption) and you do not have the micro-vascular or neuropathic disease that accompanies, for example, diabetes. But you might be on medication – potentially anti-hypertensive medication – and that is not stated.
The first thing I would want to be sure of is that you are on no medications that might impact your blood pressure. If so, and before all else, this might need attention.
Secondly, I would want to know your weight … and whether you are overweight. While you may not be, it can be very difficult to determine – accurately – the dry weight of a patient who is overweight.
I would also want to know the status of your heart – perhaps with an echocardiogram.
Your serum albumin might also be important, though it is not immediately clear why you would have a low albumin with APCKD. I only raise it because it might be an issue. I simply don’t know enough of your case to know.
Why do I go to these things? Well, all can impact on blood pressure … especially early on in a run … and your blood pressure does seem to be dropping, from your description, right near the start of treatment. Even if your UFR is set early at 200, and even if this does turn out to be too great a UFR for you, it would be unusual for this to manifest as symptomatic hypotension so early in the course of your run unless accompanied by some other factor. As a result, it makes me wonder if there are other reasons for your low BP … pills, a cardiac output issue or – most likely of all – you are running too low a dry weight and there may be a need to reset your dry weight upwards now that you are established on dialysis.
You ask … “how does an educated patient approach their physician regarding the UFR peer reviewed recommendation?”
Perhaps my response, here, would be talk to him/her. Ask of your nephrologist the questions you have asked of me.
He/she will have the sort of information I do not. If it is your UFR, and that truly is the problem, then he/she will be able to easily exclude the issues - and there are others, too - that I have raised and come to the right conclusion.
While it may well be, as you have said, a matter of winding back the UFR, I am not yet convinced that is the only problem here.
So … talk it over with your nephrologist and your team. While it may correctly be a matter of lengthening your treatment to allow a lower UF rate of, say, 8ml/kg/hr, there are other possibilities that I cannot forsee that may equally be an issue.
There is nothing like having a talk with your management team. They are there and have all the information. I am not. They are ideally placed to solve this problem for you. I am not.
And, for my gut feel? With a higher dry weight, you will experience … less hypotensive episodes, less treatment-related hypovolaemic stimulation of thirst, less post-treatment thirst, less tendency to fluid excess between treatments, less interdialytic weight gain, less staff-patient angst and less of a need for a high UFR during the next treatment.
From afar, I suspect your dry weight assessment is at the core of the problem. But … you need a close up assessment. Good luck with your visit. I hope it all gets sorted.