My Dialysis Wish List

Recently, I was asked what the top three items would be on my wish list for dialysis. I was pretty sure about the top one item. Portability, without doubt. I miss the ability to travel for long periods without resorting to in-centre four-hour sessions. Currently, travel is restricted to a maximum of two nights away from home. If, under some rare circumstances I do have to travel for longer durations, I would need to go to a centre. With NephroPlus dialysis centres in many places now, quality of dialysis is no longer a concern. However, the whole aspect of having to restrict my diet and fluids and laying in bed awake for four hours during a session seems rather painful.


A portable dialysis machine

However, pressed for two more items on the wish list set me thinking. What were the other problems for me in dialysis? Considering that I get daily, nocturnal sessions, I can’t even say less diet and fluid restrictions because I have none. 

Water treatment comes to my mind as a huge pain. First off, the water treatment plant occupies a large space in my home. There are minor issues once in a way. I need to put it on to fill up my treatment water tank once every day I dialyze. So, if there was a way this could be eliminated in some manner, it would be a huge relief.


A water treatment plant

The third thing I would like is for the machine to be able to detect how much water to remove during my session. This is a big problem for me on dialysis. It is also a major problem for many other patients. Figuring out the dry weight is a challenge that has not as yet been resolved satisfactorily. Currently this is done only by indirect methods like checking for oedema, breathlessness, blood pressure, incidence of cramps and hypotension etc. 

There are machines available that operate on the principle of bioimpedance that claim to be able to estimate the amount of excess fluid in the body but their accuracy is questionable. I am sure there could be some way by which the dialysis machine could check the density of the blood and figure out how much excess fluid is there and set the Ultrafiltration target appropriately.




Dialysis has not seen much innovation over the past several decades. Apart from the NxStage System One that addressed the problem of portability, hardly anything else has been released. What the dialysis industry needs today is a major shake-up of things and bring in a wave of innovation that truly addresses the several problems we patients face on a regular basis.




Comments

Sir, I guess your wish list be the start point for the upteen additions to the wish lists of many underpriviliged members of the ever going fraternity. God bless all.
Punita said…
Kamal, your commitment and vigour is commendable. Recently, I lost a close relative who was on dialysis for the last 13 years. Witnessing his and his family's struggle has been highly frustrating. When I came in contact with your blog, I tried to persuade them for seeking help from various resources provided by your cause, but I realised it is difficult to break the mould.

Keep up with your good work. God Bless!