Hi Dr. John,
As of a couple weeks ago, my eGFR was 15. My nephrologist feels within 6 months, I'll be on dialysis. I've been trying to decide what dialysis option I should choose. I've been doing a lot of research online and have most of thie answers that I'm looking for but there are a few unanswered ones I still have.
I have it narrowed down to PD or Nocturnal HHD. Months ago, before I understood the difference, I went to a vascular surgeon for an evaluation on the ports I could have. He felt he could put one in my abdomen or either the fistula in my arm. Let me explain, I just turned 50 but when I was 18, I had a bone marrow transplant. My spleen was enlarged (9lbs.) and removed right before the BMT. Where my spleen was removed, there is a big scar down my abdomen from 30+ years ago. But the surgeon felt it was ok for a peritoneal cath. I'm cured of the leukemia but have had a lot of major side effects for the past 30 years. The CKD is also a side effect from the BMT and all the meds I've had to take. I was totally paralyzed when I was having BMT but now I walk and try to keep an active schedule during the day. So the at home while sleeping options are the best for me.
[B]You have had a long battle, it is clear ... but you also seem to be approaching this next challenge with both common sense and a good attitude, so it bodes well for a good transition into dialysis, difficult though that may be.
My comment here is around your start- time. When to start dialysis is a complex decision that encompasses not just the eGFR ... dialysis should NOT be started on or at any given eGFR, alone and in isolation.
eGFR is best used, in advancing CKD4 to CKD5, as a guide when to initiate things:
eGFR 20-25 = start the education process about choices - and ALL the choices - available, with home therapies (PD +/- HD) as ALWAYS the preferred option and centre-based care ALWAYS as only a fall-back option if, for one reason or another, home care cannot be managed. In my view, there is absolutely NO excuse for any dialysis service worth its salt NOT to offer home care. If any particular service does not, then patients should vote with their feet and find one that does. In addition, at eGFR 20-25, thought should be given to identifying and educating any potential live donor.
eGFR 20 = get the AVF in, if any modality of HD has been selected as the primary dialysis choice ... and/or start discussions with and the initial work-up of a donor, if a living donor is available.
eGFR 15 = begin a more detailed donor work-up if there is a live donor or, if not, then ensure that all the dialysis ducks are in a row ... completed and adequate education with meeting of other dialysis patients for reassurance, dialysis service visits, AVF working and optimal for dialysis (ie: no additional surgery needed like superficialization or transposition), and home visits have been completed to ensure all OK for later home installation and/or storage etc. for eventual dialysis.
eGFR 10-12 or less = dialysis is getting closer, and here, a watch for symptoms and 'struggling' is needed. Dialysis is not run by numbers (eg: eGFR) but a complex of symptoms + increasingly difficult to control volume and BP + lab data + a person who is beginning to 'struggle' a bit. In some, the eGFR can happily drift down to 5-6 or so WITHOUT significant other effects ... and if so, fine!! ... that is NOT an issue as long as the patient is well. So ... picking the moment to initiate dialysis is an 'art', not a number, and should be individualised, patient by patient. In the end, some will coincidentally start at an eGFR of 10-12, others may be well and NOT need dialysis right down to the 5-6 range.
My point? ... eGFR is NOT the be-all and end-all ... it is just a number (and often a rather misleading one too, if used in the wrong way, or within the wrong context.[/B]
My unanswered questions include:
- I'm a diabetic. Would the dextrose used in PD would make diabetes harder to control?
To a degree, that can be true, and can create problems with control ... plus there is some additional risk of significant weight gain. We used to add insulin to the PD fluid, back 'then', but tend no longer to do so ... it worked OK but the additional contaminatory risk was significant.
- I realize the more time I have dialysis treatments, the better. My question is if I did 8 hours of exchanges with a PD cycler, 6 or 7 times a week, is the treatment as effective as NHHD? (Is the filtration process more effective in NHHD?)
[B]More IS better ... no matter how you spin it ... no matter what the biases ... no matter who, how, when, what or why.
APD is, by definition, a 7 night a week process. It's an every night commitment. To do less will just not provide sufficient dialysis 'grunt'!
Nocturnal HD is ideal as either an alternate night regimen (one night on, one night off) or, better in my view and as we tend to run it in my unit, 2 nights on, one night off. The jury remains out between the two. 3 times a week exposes patients to the 'long break' = well known to have lethal outcomes.
HD - and again ... no matter how you spin it ... no matter what the biases ... no matter who, how, when, what or why - is more 'efficient' than PD. But, that is not to say that, especially in the early months after starting dialysis, PD isn't a good option ... it is, for the right person. While choice of modality should be predominantly lifestyle driven, there ARE medical issues that matter.
You have had your spleen out and have a big access wound to show for it: this may mean adhesions or scar tissue inside your tummy which may create problems for PD. In addition, PD is just not as 'oomphy' as HD so, especially for big men, PD may just not be able to remove enough solute to cut the mustard.
Waste removal is undeniably better with HD - as is fluid removal (ultrafiltration) - but HD patients (and, sadly, too often their treating nephrologists as well) all too often fall into the trap of thinking efficiency = much less time on treatment.
NO!! Wrong ... so very wrong.
Efficiency is not a single entity: there is solute removal 'efficiency' ... and then there is fluid (or volume) ultrafiltration 'efficiency'. Solute removal efficiency varies according to the solute: some simply take longer to remove (like phosphate does). The slower and lower the per-hour ultrafiltration rate, the better.
So ... efficiency does not cancel time. Time benefits efficiency - absolutely - but to contract time in homage to the god of efficiency simply isn't correct.
In my opinion ... and not to be scornful of PD as we encourage both PD and HD - but always at home, and each chosen carefully to best match the patient ... long, slow, gentle (I like to use the word 'subliminal') HD is the optimum option.
Alternate night, or 2 on : 1 off ... well, that is an interesting but lesser debate that only nibbles only at the edges of 'better' or 'best'.[/B]
I'm not afraid of needles, I've had a lot of them in my lifetime! But my wife and I have watched videos of someone helping their spouse go through their routine of getting hooked up to a machine and it looks like a lot. My wife has had CNA nurse training to help me and says she will support me in whatever I decide.
Needles are a psychological hurdle - more for some than for others - but our experience is that provided patients aren't rushed and are taken at their own speed through the needling process, all master it. In the end, home patients become so protective of their access that many refuse to let anyone - even the most experienced nurses - touch them.
So I do have a caregiver. I believe NHHD has a slight advantage over APD on overall health benefits and a somewhat better chance at longer life but I'm not sure I'm ready to go through that every night.
I know the peritoneum wears out but it's good to know I have an option. Just not sure which treatment I should start with.
Can you give me some suggestions Dr. John.
[B]If you are thin, well less than 100 kg, and want to give PD a shot ... go for it. If you are a 'big guy' ... I'd shoot for NHHD on a 1 night on, one night off basis or, in my view, a bit better = 2 on, 1 off.
Whatever you do ... do it at home.
As for being daunted by the machine?? Imagine you had never seen a motor car. Ever. Then, you were sat in a drivers seat and told you were going to learn to drive this thing. Nobs, buttons, levers, lights, a round 'thing' in front of you ... you'd freak. No way. Not possible. But now, I bet you drive without a second thought. You have been taught. It's easy. You don t think twice.*
It is the same with a dialysis machine. Learn to drive it. Take care. Don't hurry. Understand how. But, once you do - it is easier to drive than a motor car! ... and safer! Just, take your time. Learn ... it is not scary. Listen to its noises. Become a dialysis whisperer ... and you will do just fine. Things DO go wrong, but a good trainer will equip you to manage any and every incident. Just take your time.[/B]