Daily Nocturnal Home HDF - 1 Year Update

I switched to Daily Nocturnal Home HDF  in June 2022. It has now been a year since I made that switch. The primary reason I switched was my Beta-2 Microglobulin (Beta-2m) had become very high, causing shoulder pain especially when it became cold at night and I was on dialysis. This was due to a condition called Dialysis-related Amyloidosis (DRA). Conventional dialysis - even more frequent, long duration dialysis with a high flux dialyser removes only some Beta-2m. This modality removes more than thrice weekly, low flux dialysis for four hours. But apparently, still not enough. So, I switched to Daily Nocturnal HDF about a year back. 

I wrote about my experience 1 month, 3 months and 6 months after switching. Here is an update after a year.

My Beta-2m level is at the lowest it has been ever since I switched to this modality. It is 12,047 ng/ml (normal range - 604 to 2,286 ng/ml). Before I switched to this modality, it was 20,476 ng/ml. So, there has been a significant reduction. Not normal yet. But slowly getting there.

The good thing is the shoulder pain has gone. That is a major relief. 

Another thing that this modality is helping with is the prevention of further build-up of Beta-2m in my body which can cause more severe DRA including deposits of Amyloid on my spine, heart and brain which can be fatal eventually.

Also, this modality reduces the risk of complications like hypotension and cramps during dialysis. I did not find too much of a difference here because I was already on daily nocturnal hemodialysis. 

In summary, Daily Nocturnal Home HDF has addressed the main reason for which I switched very well. I hope to continue to see benefits as I enter the second year on this therapy.


Anonymous said…
Dearest kamal..

Keep inspiring. Take care. God bless!☺️❤️

Usha Balu.
Krishnan said…
good information. Motivates many.
Dr Krishnan
Vijendra Paul said…
Dear Kamal,
I read your interesting book on dialysis and read your blog about nocturnal daily dialysis for 5-6 hours.
Frankly, I’m quite impressed by your approach and method adopted to fight the kidney disease.
I am on hemodialy. I was hypertensive, not diabetic. In your latest blog, problem of accumulation of vita micro glob in as side effect of dialysis. I also suffer from this problem as my latest results show that this indicator should be less than 2.5, but in my case it is more than 35. The nephrologist told me that there is no treatment for it. But from your blog treatment is clear. I also want to adopt home haemodialysis as soon as possible, but with 5008 machine. The nephro Doc told me that this machine removes B2 microglobulin substationaly. But he could not say it was 100%. In ganga ram hospital New Delhi dialysis unit, the same mantra was repeated in a mechanical manner. I seek guidance from you in this regard. You are a true inspiration to people like me. Infect, I would like to meet you to personally congratulate you on writing an and excellent book on a drab subject like Dialysis but making the best of adversity. Will been touch and will update you about my dialysis status. Please keep the flag flying. Shall be grateful for a response.

Vijendra Paul
115/5 Rana Enclave Rajpur Dehradun 248009
Kamal D Shah said…
Hello sir, thanks for your comment. Yes, Hemodiafiltration using any machine designed for this purpose does remove Beta 2 Microglobulin. I have experienced this myself. Studies also support this.

Please let me know if you have any further questions.
Vijendra Paul said…
Dear, Sri Kamal, would be keen to discuss this in person, in Hyderabad or wherever convenient. Very keen to set up daily nocturnal Hemodiafilteration of 5-6 hours, so the ill effects of beta microglobulin at the base of my fingers, as told by nephrologist, goes away, as I’ve lost grip strength in my fingers. I’m also keen to understand from you the intricacies of daily nocturnal dialysis, and the criterion for the selection of the right technical person to assist in the same. Trying to convince the Uttrakhand government to invite you for a lecture in Dehradun, on challenges in dialysis in districts ,and especially sub districts, in mountainous regions. Would appreciate any and all advice in this regard.
Kamal D Shah said…
Sir, thanks for your response. Sure sir. We can plan. If I am coming that side, will definitely let you know. If you happen to be in Hyderabad, please let me know. Happy to answer any further questions you ay have with regard to HDF. You can think of starting in the centre you are going to if they have a HDF facility.