Daily nocturnal home hemo gives me everything I want from life except the ability to travel longer



I am really grateful for the ability to dialyse at home five nights a week, seven to eight hours each night. This modality has given me the freedom to live an unfettered life. I don't bother much about what I eat or drink. I am able to work for long hours. I am able to swim, to do strength training. I am leading an almost normal life except for the dialysis I need to undergo at night. I do have some medical issues from time to time which are mostly (apart from the bone issues) resolved by some form of treatment.

There is however one thing that I miss and that is the ability to travel for more than one night away from home. I skip dialysis these days on Wednesdays and Saturdays. I plan all my travel so that I spend a maximum of one night away from home - typically Wednesdays or Saturdays. I am flexible with the non-dialysis days at times and I might take another night off instead of those days. But I have almost decided not to take more than one night off away from nocturnal hemo.

You might think why I can't travel longer and get a few dialysis sessions at a centre?

Well, I have done that several times in the past. I have blogged extensively about those trips in this blog. My longest trip away from home has been three weeks long. But I hated the idea of going for dialysis during a holiday.

Once you get used to getting dialysis at home, especially the longer duration, more frequent sessions, believe me, it is very difficult to go back, even for a short duration to getting the four hour sessions in the centre. Also while some centres do offer nocturnal, it's just not the same as getting dialysis at home. The quiet, the dark room, the complete lack of disturbance are very conducive to a peaceful night of sleep.

Also, when I travel, dialysis is the last thing I want to think about. I would like to enjoy the place, the food, the hotel and so on. Who really wants to be lying in a bed with two thick needles in your arm?

People often ask me why I can't get a machine such as the NxStage System One which affords the ability to travel while getting your same home regimen while traveling. I would love to. Trouble is the company won't. I have been in touch with them and they have no plans of coming to India. Recently the company got acquired by Fresenius and that increases the chance of the machine coming to India by about 0.1%. Let's see where that goes.

I might be sounding like I am complaining but no, I have no right to complain. Given my circumstances, I think daily nocturnal itself is a boon and I can never be grateful enough. Just that I miss long travel. Period.

Comments

TeeJcee said…
It is interesting reading about the inability to travel. When my wife started Haemodialysis, our main concern was travel. We ended up putting our full size Fresenius machine in our caravan so we have been able to travel. We have been across Australia, 5000 kilometres, 3 times so far. We were not letting a little thing like dialysis get in our way. My wife dialyses every second evening for 5 hours.
Kamal D Shah said…
Good to know! How do you manage the water treatment system? Isn't it big? What about raw water?

Unfortunately in India, we don't have caravans.
Unknown said…
Sir..can you please tell me exactly from where to buy a home hemodialysis machine which model would be the best ir is it the same we see in the dialysis centre
Kamal D Shah said…
Hello. I use the same machine that we use in a dialysis centre. There is a machine specific for home hemodialysis but it is not yet available in India.