Saturday, February 6, 2021

Peritoneal Dialysis: Nephrology's Best Kept Secret


When anyone in my extended circle of family and friends or their extended circles is diagnosed with kidney disease, they reach out to me. Having lived with this disease for the last almost 24 years, and having managed not too badly, people feel I could advise them about how to get going on this arduous journey.

One thing is common among almost all these people. They have not heard about Peritoneal Dialysis (PD). They do not know what it is. They have no clue that such a thing exists.

It is unfortunate that even after all these years, PD continues to be the bastard child of nephrology.

I have often thought hard about this. I have discussed with many people. Why is PD relegated to the fringes even today? Is it physician training? Physician reimbursement? Patient reluctance? Manufacturers' reticence? A combination of all these?

I have never got a convincing answer.

Today, after all these years, if I had a choice to choose a dialysis modality with no clinical constraints, I would pick PD with no hesitation. 

And yet, there are thousands of newly diagnosed patients who are being put on Hemodialysis without being given a choice, without as much as being told about the option. 

An option where there are no needles;

An option where you can don't need to go to the hospital;

An option where you have complete control over your therapy rather than relying on dialysis centre staff;

An option where your residual kidney function is preserved better than in Hemodialysis;

An option where you are not at risk of contracting infections like Hepatitis C because of exposure of your blood.

What's not to like?

Well, granted that some people don't like to have a tube in their stomachs. Some people don't like taking care in their hands. Bringing dialysis home is also not suitable for some. There also is an increased risk of bacterial infections. Agreed. There are some negatives.

However, is it too much to ask that I at least be told about all the options? Options that will affect me and could be life changing.

I had written a guest post at the instance of Dr. Kenar Jhaveri on his blog, Nephron Power in 2011. When I read that post today, I see that sadly, nothing has changed. 

At NephroPlus too, we have tried multiple times to introduce PD for our guests. It just didn't work out. I do not know why. We were ready to invest heavily. We were ready to take losses in the beginning. Nope! It just wouldn't work.

Where does that leave us? Is PD doomed to be a therapy only for those for whom Hemodialysis is not an option? 

I believe patients need to be more aware. When someone is diagnosed with Kidney Failure, they need to find out everything that can about it. Find out what the options are. Read up on what the prognosis is. Think about what you would like. Think about which option would work for you best. Then have an informed discussion with your doctor. And together, decide what's best for you. 

YOU are the affected party. YOU must have a say. Anything less than that is foolish on YOUR part.



3 comments:

Shravan Vasishth said...

Hi Kamal, one important caveat might be that one has to have some residual kidney function for PD to work. I have been on PD since June 2020 (my shunt got infected and had to be removed entirely---it was a nightmare, two months in hospital). Initially, I had breathing difficulty with PD. Then I started Tai Chi and Qi Gong, focusing on breathing, and I managed to get my breath under control. Then I started having other problems, one after another. First it was palpitations during dialysis, then stomach aches (no infection was ever found). Now I have such severe pain in the upper abdomen that I have to take pain killers. I'm also being underdialysed with PD, and my entire trunk (solar phlexus area) has gone numb (no sensation on the skin), and the skin around the trapezoid muscles is also numb. The abdomen pain was never clarified, we don't know why it happens. The doctor says it's psychological and that I don't really want to do PD at home (I think he's wrong).

In the end, the doctor and I decided to switch back to hemo. I got a new shunt last week, and in 5 weeks or so I will give up on PD.

I do admit that if PD had worked for me, it would have been perfect. I am dialysing at night, and in theory I should have my days free. However, I am so exhausted from the pain and just generally exhausted that I just lie on the sofa all day. I take a 1-2 hour walk daily (well tomorrow will be hard--heavy snow and -10 degrees outside), but that is all that I do. I've been unable to do much work since December (I teach at uni, and can do it online, but I need to be writing papers and books, and just can't sit up long enough to do that kind of work right now). Things will improve in mid March I think, once I move back to hemo. At least I hope so.


Kamal D Shah said...

Oh Shravan, so sorry you are going through so much. I really hope you feel better soon.

Couple of things in response to your comment. While PD works better for those with residual kidney function, I am not sure it is accurate to say it only works in those with Residual kidney function. I had zero kidney function in my six years on PD. I guess each individual is different.

Also, my point is - give us the choice. Don't decide for us. PD may not work for some people. It can work like a charm for other people. Patients should be allowed to decide.

Get well soon Shravan!

Shravan Vasishth said...

Yes, fully agree with you on this. In 2011, when I started dialysis, I wish someone had pointed me to PD. They put me on hemo right away when I had residual kidney function (it was a transplanted kidney). I don't know why.

And you are right, I think I was just unlucky with PD. The doctors did expect it to work for some two years.

Right now every day is a struggle.