I switched to Daily Nocturnal Home HDF

I have been on Daily Nocturnal Home Hemodialysis (DNHHD) from May 2006. That's 16 years. For probably more than half that time, I have been using a High Flux Dialyser. I dialyse five nights a week for about 7.5 hours each night. I used to do 6 nights but switched to 5 nights a few years back. 

Despite the large number of hours I get on the machine and the high flux dialyser that I use, I have trouble with Beta-2 Microglobulin (Beta2M). This has resulted in me having to get the Carpal Tunnels decompressed in both my wrists and I have bad shoulder pain while on dialysis when its cold (either during winters or in summers when the AC is on). This specifically has been described in the literature as Dialysis Associated Amyloidosis (DRA).

"Symptoms — Patients with DRA most commonly complain of shoulder pain related to scapulohumeral periarthritis and rotator cuff infiltration by amyloid and of symptoms of carpal tunnel syndrome (CTS).

Shoulder pain typically is localized to the anterolateral aspect and is usually bilateral. Abduction may elicit pain, and patients may have limited range of motion, which worsens when patients are in a supine position, particularly at night or when undergoing dialysis treatments. This pain often improves when the patient sits or stands up."

Typically, more frequent, high flux dialysis is associated with lower Beta2M deposits. But it's been 25 years. That also plays a part. And, as they say in medicine, every individual is different.

I had heard all kinds of good things about Hemodiafiltration (HDF), a dialysis technique where blood is cleared by a mix of diffusion (regular Hemodialysis clears only by diffusion) and convection. Convective clearance has been associated with much better removal of the so-called middle molecules like Beta2M.

My nephrologist, the brilliant and highly reputed Dr. Rajasekhara Chakravarthi advised me to switch to HDF. I was reluctant.

India has recently seen an increased adoption of HDF. However this is only at the hospital and therefore, thrice a week only. For me thrice a week wouldn't work as I need my fluid removal to be more regular and over longer hours. After all these years on DNHHD, diet and fluid restrictions are things I cannot tolerate.

So, if I had to do HDF, it had to be Daily Nocturnal Home HDF!

When I asked some experts abroad I knew about this, they discouraged me. They said I could lose too much of 'the good guys', presumably referring to things like protein and vitamins. I dropped the idea.

Recently however, the shoulder pain has worsened. I also read up about the risk of Amyloid depositing in the spine and the heart over time if the removal of Beta2M was not improved and that could lead to a lot of problems. I was wondering what could be done about this.

I was told a few months back that one of our Home Hemodialysis guests in Goa was recommended Daily Nocturnal HDF. I was a little surprised. I called the nephrologist, Dr. Amol Mahaldar, who is a highly reputed nephrologist from Goa. I told him about the concerns raised by other nephrologists when I reached out to them about this. He said there was some published research that talked about the benefits and sent me this article. Coincidentally, I had met Dr. Sandip Mitra, one of the authors of this chapter, at the Global Home Hemodialysis Experts Forum many years ago and about which I had blogged here!

I reached out to Dr. Mitra by email and after a few email exchanges and a call, I gathered he was all supportive for me to switch. 

I spoke to my nephrologist and he was also fully supportive. So I ordered the machine, did a baseline set of investigations and switched to this modality on the 5th of June. It has been about a week. I have been doing about 7.5 hours, skipping only on Wednesday and Saturday. I don't feel any different. It's been only a week. These things take a few months to show the real impact, I guess.

The plan is to continue for a month and then run the tests again. Based on those results, we will re-evaluate and together with my nephrologist, I will decide if should do 3 nights HDF and 2 nights HD or continue with 5 nights a week of HDF.

Fingers crossed!


All the best Sir
KP said…
You're such an inspirational person! Couple of Qs: how did you manage to create ultrapure dialysate while using high-flux dialyzers? Also, did you consider going in-clinic 1-2x/week for HDF and remaining nocturnal HHD?
Kamal D Shah said…
Thanks KP!

I got a small 2-stage RO plant made for home. That gives me very good quality water. I did not consider going in-clinic as home is much more comfortable.
Nisha said…
God bless !! Take care ..Kamal ! ☺️❤️
Dailyhemo said…
Hello Kamal, would like more info on creating a home dialysis setup, from R.O. to dialysis machine. Do you know of any media, video guides that describe how to? Btw, which HDF machine did you choose?
Kamal D Shah said…
Hello, I am based in India. The situation is here is very different from the US, where I assume you are based out of. Nevertheless, I have described my journey here: http://www.kamaldshah.com/2008/10/my-home-hemo-journey-part-1.html.

Kamal D Shah said…
Beyond that, if you have any questions, you can email me at kamal@kamaldshah.com