Type 1D, Stage 3 - what can be done to avoid further kidney damage?

Dear Dr Agar

Are you aware of any promising new therapies that can halt further progression of diabetic nephropathy? Because of unknown reasons, my blood sugar control has become erratic & volatile. My BP is well managed however. In spite of being in Stage 3 (serum creatinine around 120-130 umol/L, egfr 38-45?), I feel quite well and exercise daily. The big question is how to stay this way and avoid renal failure. Is there anything that may offer someone like me any hope?

Dear Achilles Heel

I hate to defer an answer to a question, but my role at the Home Dialysis Central site and the brief I have sustained here for the last 5 years or so has been to answer questions regarding haemodialysis - and, in particular, home haemodialysis.

To open the can of worms into early or mid-CKD3, long before the preparatory phase for dialysis needs to begin, would open this largely altruistic service to a far greater degree than I can hope to manage.

These questions are for your advisor(s) … whether they be nephrologists, endocrinologists, dietetics, or others. In all these areas, slow but cumulative inroads are being made into the slowing of CKD progression, the remodelling of CKD-related damage already done, and the improving of symptomatic CKD in the later phases. Your advisors will - or should - know as much (or more) than I do of these incremental advances. They, not I, are your best avenues for optimising your individual care.

As each patient is different, as each has unique issues, circumstances, and co-morbidities, CKD treatment plans should (and must) vary, patient to patient, and there is no one-size-fits-all. If I give you any advice on this issue, it is that: seek the best individualised plan - for you, as an individual - and avoid generic fast-fixes. As the latter often are fed by generic advice or comment made at Internet sites, you will, seriously, do better if you channel your energies into working with ‘real people’ in your local area.

I can only encourage you to form strong relationships with your face-to-face team, and not become so Internet-hooked that you begin to cherry-pick nebulous advice from the net - whether that be from me, or others in this space - in preference to adopting hard-worked treatment plan with the experts who know you.

Your best way to stave off what may still prove to be the inevitable, is to work with your home team, and not some unknown-to-you ‘advisor’ on the Internet.

Good luck …

Dr Agar

There seems to be some incredibly erroneous impression created here. I am “not internet-hooked” and looking to “cherry-pick nebulous advice from the net” as you put it. Like anyone else who uses this forum, I too have a team of doctors whom I work with to deal with my medical problems. And like everyone else, I find that there is a need to continue asking questions about all sorts of questions & concerns that arise.

As far as I can tell, I do not see that people on this forum are always told to go back to their Nephrologists with their questions. In fact, there is a lot of good feedback and advice about concerns people raise so I naturally assumed that I could do the same.

It is true that I am not on dialysis (Thank God!) but the way people who are in the earlier stages of CKD are routinely ignored, neglected and met with a wall of silence by the field of nephrology in general - I will be there soon enough. I somehow imagined when I was diagnosed with CKD a few years ago that it would be the highest of priorities in the field of nephrology to prevent someone from falling into end-stage kidney failure, with the high cost to our national healthcare that this entails & enormous personal cost and suffering that kidney failure brings. But incredibly, that does not seem to be the focus whatsoever, as evidenced by the relative lack of research into kidney disease that exists compared to other diseases and the incredible lack of understanding, empathy & focus that nephrologists & other specialists have towards patients in the early and moderate stage of CKD.

Hi Achilles Heel. You are right that helping to slow CKD is a VERY important priority–and it is one that we take very seriously at the Medical Education Institute, which runs this site. But, THIS site, Home Dialysis Central, is dedicated to raising awareness and use of home dialysis, and that’s what Dr. Agar, a global expert in home dialysis, helps us to do. We have 8 websites. Our Lifeoptions.org website has content related to slowing CKD, and we will be adding more–soon, I hope. I wish that we had a nephrologist of his caliber to help us with questions about slowing CKD, but we don’t. Maybe we will be that fortunate in the future. The good news that, for some reason, few are ever told is that with stage 3 CKD, only 20% will ever go on to experience kidney failure; in the other 80%, their kidneys last as long as they do. I hope that is true in your case. (You are more likely to be in the 20% if you do not have protein in your urine).

In the meantime, being engaged in your care (you are!), doing what you can to control your blood pressure and blood sugar (if those are an issue), quitting smoking if you smoke, losing weight if you are overweight (and eating real, vs. processed foods)
, becoming more physically active, avoiding nephrotoxic medications and X-ray contrast dyes, and taking mediations specific to your diagnosis are pretty much what there is to offer online. Dr. Agar gave you an important clue about your anemia–but can’t get TOO close to the edge of addressing your particular medical condition. I wish that everyone we encountered who found out that they have stage 3 CKD was as curious and articulate and committed to finding solutions as you are! Unfortunately, on this site, at least, we do need to focus our efforts on home dialysis.

Oh–I was just reminded of this: A treatment that is in development to help regenerate already-damaged kidneys. Looks like the studies are going well. So, there may be new treatments short of dialysis available to help those whose kidneys are failing, but have not yet failed. http://www.bizjournals.com/triad/news/2014/08/13/tengion-says-regenerative-kidney-treatment-trial.html.