Saturday, March 14, 2015

Improving outcomes and QoL in patients on long term dialysis: what is the secret?

I was recently a panelist on a discussion at the Indian Society of Hemodialysis Conference on the topic, "Improving outcomes and Quality of Life in patients on long term dialysis".



I have been on dialysis for almost eighteen years now. I lead an almost normal life. I swim every morning. I work full time. I travel regularly. If you asked me what the secret ingredient in this recipe is, I would unhesitatingly say, "hours, hours, hours". The number of hours you spend on the machine, in my mind, is the most important factor.

I could not make that point as forcefully as I would have liked to in the discussion. In any panel discussion, even without Arnab Goswami as the moderator, there is a limited amount of time that each panelist gets to make his or her point. With Arnab, you have a second or two before he would interject and then make your point for you even if it is not really your point!

But, I digress.

There are two things dialysis removes - fluid and toxins. You can use a better dialyzer to remove toxins in a better manner. However, for fluid removal, even the best dialyzer in the world is restricted by the physiology of the body. The human body can only handle about 400 ml/hour without any complications. Stretch this limit and you are setting yourself up for a variety of problems like cramps, low blood pressure and some heart issues like Myocardial Stunning.

More hours on the machine also means you have less time between treatments. This means lower inter-dialytic weight gains. The normal human body has about 5-6 liters of blood. When someone consumes about 2 liters of fluid without removing it, it means almost 40% extra fluid for the heart to pump. This puts a lot of load on the heart causing it to expand (Left Ventricular Hypertrophy) and eventually fail. That is why most dialysis patients die of Cardiac issues and many of them die during the 'long-gap' between sessions. For patients on thrice a week dialysis, this typically is the 'killer weekend' - the Sunday-Monday gap or the Saturday-Sunday gap.

So, how much dialysis should one get?

I would say, "however much you can practically get!" I get about seven hours each night, six nights a week. That's at least 42 hours per week! Compare this to those who get five hours, twice weekly or four hours, thrice weekly. I get a lot more. Yes, there are a large number of people who have survived for a lot longer than I have on these modalities. But we must not get swayed by a few odd cases. The vast majority of patients who get low hours per week have poor survivals and quality of life.

Even when it comes to toxins, middle molecules can only be removed by more hours on the machine. These are the silent killers when it comes to long term dialysis.

I strongly believe a lot more effort needs to be made by the Indian dialysis community in getting patients more hours on the machine. Yes, patients here have financial constraints. Yes, we have a resource crunch. But if we honestly ask ourselves the question, "Are we giving optimal (not just adequate) dialysis to every patient who can afford it?", I am sure the answer is a big "No".

Are we giving enough hours to patients covered by private insurance? No!

Are we giving enough hours to patients covered by Government reimbursement schemes? No!

Are we giving enough hours to patients to patients who can afford them? No!

Where is the financial constraint for patients here?

I rest my case.

4 comments:

Barak Giles said...

Kamal,
I couldn't agree with you more! My dad has been on dialysis for seven years and on home hemodialysis for 5 years. His quality of life improved considerably once he started his dialysis at home...just like you said, more frequent dialysis over longer periods of time. And the beauty is that he is in control of his life! We have a family owned business and my dad is able to continue to work, travel and enjoy life with us. I would like to stay in contact with you about future updates on long term and home hemodialysis. Please keep me posted.

Kamal Shah said...

Good to know Barak. Yes, it is true that with home hemo you get your life back. Sure, let us be in touch. Thanks!

Nisha said...

Kamal....I always wanted to ask this question...I have often come across... Patients.. Who come to the hospital on non Dialysis days to remove fluid from the stomach ( they invariably have bloated stomach)...is this the excess buildup fluid?what is that?

Kamal Shah said...

When there is too much fluid in the body over a long period of time, it starts accumulating in the stomach and around the lungs and heart also some times. The procedure you have seen might be a "tap" which is basically removing this accumulated fluid from the stomach. This situation must be avoided as it is not good to have a tap done unless absolutely necessary.