Saturday, October 8, 2011

Six times, Seven times, Five times

When I started daily nocturnal home hemodialysis in May 2006, I dialyzed six times a week and took Sundays off. It was that way for a long, long time. However those were the days of huge fluid weight gains. Sometimes even 5 kgs in one day! So, my Mondays would be pretty uncomfortable. Heavy chest and all. There were two main reasons I was doing this. Most of my mentors in the US (Bill Peckham, Rich Berkowitz and Pierre Lachan) were doing six nights a week. So, I did too. And Jairam, the guy who did the dialysis for me would take Sundays off.

Then somewhere down the line, I learnt the ropes and could do everything on my own - from start to finish. So, I thought why not make my Mondays comfortable? And I switched to seven times a week! Six nights Jairam would do most of it and Sundays I would do everything. I would be alone in my room and I would do everything from start to finish on my own. My parents would be in the house though and I always had my cell phone next to me to call them should I need help.

Earlier this year, however, my parents went on a holiday to the US. I was home alone. Before going, they extracted a promise from me never to dialyze alone. They shuddered at the thought of a blood leak and no one in the house to help me. So, I switched back to six nights a week when Jairam would come and took Sundays off from dialysis.

Recently, involuntarily, my fluid intake has reduced. I put on, on an average, only about 2 to 2.5 kgs of fluid weight between sessions. Also, to be honest with you, I have started to tire of dialysis. Fourteen years are taking their toll. Needles are not pleasant. It is very difficult to get used to them. I was also 'inspired' by Bill Peckham's "two nights on, one night off" regimen! So, I decided to take Thursdays off as well. So, these days, I dialyze Monday, Tuesday, Wednesday, take Thursday off, then dialyze Friday, Saturday and take Sundays off.

8 comments:

tam said...

Sir,
My mother is suffering from ESKD. The docter suggested for CAPD considering the non-availibility of hemo diyalisis in our area. But she got infection at the very first week of PD. She was not comfortable from the very begining of PD. Heavy antibiotics and finaly removal of catheter saved her after one month hospitaliztion. Now she is in HD. Already we are in financial difficulty. Kindly advice as where we can get help.

Kamal D Shah said...

Please send me your email address at kamal@kamaldshah.com.

IGA Nephropathy said...

Hi Kamal....did not know you followed Pierre. Was he on another board related to home dialysis ? He is the founder/active moderator of the IgAN group and he shared tons of wisdom.

He is now off duty so to speak after his transplant. He was always saying that nocturnal dialysis was sometimes as good as Transplant...though I can imagine doing it on a more easy to operate home machine like Nxstage vs. a full blown machine is totally different.

Kamal D Shah said...

Pierre was a member on a forum on the www.homedialysis.org site. I was in close touch with him over email during my switch to nocturnal. Yes, he became less active on that forum too, after his transplant.

Aditya Jandial said...

Karaoke nights 10D???

Kamal D Shah said...

Hahaha! Would love to Adi! Are they on Thursdays?

Anonymous said...

My suggession would be .. dialyze for two days and then one day off and so on.
This way you will take dialysis 20 times in a month and 10 days off. Adv. of my approach is its periodical in nature.
Your model(5 times a week) calls for ~22 dialysis sessions and 8 days off in a month. But it is aperiodical.
Now its your call :)

Kamal D Shah said...

The problem is with 2 days on, 1 day off, I would need to dialyze on some Sundays and my tech does not come on Sundays.