My home hemo journey


After the tsunami, in less than a year I was off PD and back on hemo in the hospital. I hated hemo in the hospital. Here's why.

Hemodialysis in a hospital is done twice or thrice a week and for each time between three and five hours. Compare this with the functioning of a kidney. A kidney functions seven days a week and 24 hours every day! So, this kind of dialysis is woefully inadequate.

Because of this intermittent cleansing of the blood, dialyzors (I prefer this term to ‘patients’) undergo a yo-yo effect. Continuous ups and downs. Once a dialysis session is done, your blood is somewhat clean and the excess fluid is removed. But until the next dialysis session, life is a constant struggle. Drink less water. Watch your potassium. Don’t have too much fruit.

The energy levels are horrible. After a dialysis session, dialyzors feel a ‘crash’. This is a term loosely used to describe the horrible feeling after dialysis. You feel weak, tired, listless. Completely drained. I could not do anything after dialysis. I had to go and crash on the bed and doze off.

I had a full time job during this period. But I could not do much. I spent less hours at work. Even when I was there, I would not feel like doing much. It was really terrible.

I am that kind of a person who does exactly what he is advised not to. I guess many of us are like that. If the doctor restricts our fluid intake, fluids are all we want to have. I suddenly started craving fruits and liquids like crazy.

My weight gain between treatments would be a minimum of 4 kgs. Removing 4 kgs in a span of 4 hours can be pretty taxing on the body. The maximum rate of removal of water from the body that can be tolerated by us is 400 ml/hour. There are a number of sites which explain this in more detail. But when you’re removing water at the rate of 1 kg/hour, it can be very bad. The ‘crash’ after dialysis is chiefly due to this.

I understand doctors asking us to limit our fluids. But believe me, dear doctors, this is not something we’re doing intentionally. This is all about human nature. The human mind craves what it is forbidden. Please, please try this out yourself. Just for the heck of it. Just so that you understand what your patients are going through. For a week, restrict your fluids to a liter a day. And then see what happens. Don’t even undergo dialysis. Don’t even restrict your fruits and other things that we need to restrict. Just try the fluid restriction for a week. Let me know how it goes.

The dialysis process itself was horrible. Lying down in the bed for 4 hours without having anything to do can be very frustrating. With every passing minute, you feel worse because fluid is being removed at such a high rate. All around, you see people feeling miserable. The whole experience can be quite distressing.

I would be lucky if I got an hour or two of sleep. And the rest of the time would be just waiting for the whole damn thing to finish. Continuous looks at the watch. Time would move so slowly, it was almost as if the whole world has slowed down.

And I had to go through this torture just to be able to live. What kind of a life was this? Is this kind of a life really worth living?

There is a fellow dialyzor in the US called Stacy (without an ‘e’). He described it very beautifully when he said that dialysis had killed a part of his soul. This is so true. That is exactly what I felt.

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Dr. Girish Narayen, my nephrologist suggested I try daily home hemodialysis. I started looking it up on the internet. I found a lot of positive comments about this. I started digging deeper.

I could not find any references of daily home hemodialysis being done in India. However, I did find out that there were a very small number of people doing dialysis at home. But only the regular twice or thrice a week sessions.

Also, in the US, apparently, there is an entire infrastructure set up to manage emergencies. In fact, some centers also have online monitoring of the dialysis treatment performed at home.

Here, in India, of course, no such infrastructure is present. That was one of the risks. But I thought I could get a dialysis technician to come home and do the treatment for me. The dialysis technician at the hospital I was undergoing dialysis in was very good at his work.

I thought this through completely. I thought about the pros and cons. I had to rely a lot on the posts in mailing lists and forums on the internet. It was abundantly clear that daily nocturnal dialysis - 7-8 hours every night, 6 to 7 nights a week offered the best outcomes in terms of well being, longevity, minimizing co-morbidities (side effects of kidney disease like heart conditions etc.). The next best was short daily dialysis (2-4 hours every day, 6 to 7 days a week). The worst was the 4 hours thrice a week regimen.

There was no one I could contact who was doing daily dialysis in India. So, I could not get first hand, the experience of the Indian situation. This was quite unnerving.

I was clear about one thing though. I did not want to continue the way I was. I could not tolerate this at all. I needed a better life.

I decided to go for it.

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I did some research about the dialysis machine and the RO plant, the two main pieces of equipment required for home hemodialysis.

The best option would have been a portable hemodialysis machine, something akin to the NxStage System One that many people used in the US with great results. I for one, love to travel. And travel would be restricted to short weekend trips with hemodialysis. But the NxStage machine was not yet allowed to be sold outside the US. Moreover, even if I bought it there and brought it here, servicing and repair would be an issue.

So, I decided to go with the Fresenius 4008 S, a sturdy machine used widely in India. I also bought an Ion Exchange RO 100 liter/hour plant. The hemodialysis machine was setup in my bedroom. The RO plant in the terrace of my two storey house. The necessary electrical and plumbing work was done. An RO water connection was given to my bedroom for the HD machine and in my bathroom for the cleaning of the tubes and dialyser after dialysis.

Everything was finally ready by May 13th, 2006.

I decided to go for short daily to start with and then when things settled down to switch to nocturnal.

My first short daily session was good. The tech did everything. I dialysed in the evening for two hours. I continued short daily (except Sundays) for about 20 days. I then thought things were going well enough for us to switch to nocturnal.

The tech would come in around 10 in the night. He would start me off and he would sleep in the same room to take care of any alarms and any other problems that came up. I slept fairly well.

There were hardly any alarms from the machine. Most of them needed a ‘Reset’ button press to take care of.

There were however some other problems. Sometimes, blood would ooze from my arterial and venous sites. The tech was very well equipped to handle these emergencies. These incidents were due to my moving my hands in my sleep that would cause the needles to move around and cause the oozing. We then decided to tie my finger in a manner that would allow some movement of my arm but not enough to cause any oozing.

Once we did this, the oozing stopped completely.

One important thing we did was to use the buttonhole technique. You can find a lot of information on the buttonhole technique on the internet. But in this technique, the regular sharp needles are used for four to five days in a row. Cannulation is done at exactly the same sites (as opposed to the step ladder method) and the same angle. This causes a tunnel to develop. Once this tunnel has developed, we switch to blunt needles. And then cannulate at the same sites using the blunt needles everyday.

This helps in two ways. One - the pain during cannulation is reduced greatly. Two - the needles cannot puncture through the artery and vein in case the arm is moved too much and this protects against bleeding etc.

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Its been more than two years since I started nocturnal home hemodialysis.

I have come a long way indeed.

I slowly started learning the ropes. At first I just learned how to mix the bicarbonate solution that is used in conjunction with the acid solution that forms the dialysate. This was a piece of cake. You just needed to get the proportions right. Then I learned how to prime the dialyser and tubing before dialysis. This was not rocket science either. For a long time, I used to prepare the bicarb solution and finish the priming before the tech came and he would come and do the cannulation and start dialysis.

I read on the internet that the best thing a dialyzor can do is to cannulate himself. This offers a great advantage. You can actually feel the needles in you so you know exactly how to put them in. So, gradually I gathered the courage to do this. And within a few days I was cannulating myself! This was a great leap for me.

I then also learned to start the whole dialysis myself. Preparation of the bicarb solution, priming, cannulation and then starting dialysis by actually connecting the tubes to the needles and starting. This was great.

From the last month or so, I start off and am into an hour or more of dialysis before the tech comes. He is pleasantly surprised.

The toughest part about starting dialysis is putting the tapes on the needles after cannulation. You have only one hand to do this since the other arm is what you are working on! But I manage somehow.

This is a little risky however since there could be an emergency which I may not know how to deal with. I need to read up on this. But I do it inspite of this because I love the independence this offers. I can start dialysis whenever I want and not have to wait for the tech.

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Epilogue


The best part about nocturnal daily home hemo is that there are no dietary and fluid restrictions. Since you are getting 7 to 8 hours of dialysis, you can remove a lot more. 3.2 kgs should be very comfortable. Because that is what the body can easily tolerate. Not many people can drink more than that in about 16 hours.

16 hours - that’s the time you are not on dialysis. So, however much you try, you cannot build up too much fluid and toxins that can make you feel bad.

I have felt 100 times better than what I did when I was on hospital dialysis. There are no ‘crashes’ because there is no rapid fluid removal. My energy levels are much better. I am back to work full time. And I put in about 8 to 10 hours of productive work every day.

I go for a swim every morning and do 10 lengths. That’s the best part of my day. This was something I missed when I was on PD too. I am so glad I am able to swim now.

My hemoglobin has drastically improved. My need for erythropoetin has reduced. I had left ventricular dysfunction before I was on daily dialysis. That has improved considerably and my cardiologist was pleasantly surprised to note this and was thinking it was due to the daily dialysis. He hadn’t seen this at all in his entire career!

I would say I sleep about 80% on weekdays when I am on dialysis compared to perfect sleep on Sundays when I am not on dialysis. But its not bad at all. I feel completely rested.

Travel is an issue. Now that I am doing daily nocturnal, I completely abhor regular 4 hour sessions. So, when I travel, I cannot dialyze. That restricts travel plans to being away from home for a maximum of two nights. Well, theoretically I can be away for more nights but I will need to do one or more regular hospital dialysis sessions when I am away. I don’t like these sessions at all. And I doubt if hospitals and dialysis centers will allow me to dialyze the whole night. So, currently I am limited to 2 night vacations.

Overall, my life has improved dramatically. No one can say I am unwell without actually knowing about my medical condition (except of course if they happen to see my fistula which can give nightmares to kids!).

This has been entirely due to nocturnal home hemodialysis. I must really thank my nephrologist, Dr. Girish Narayen who advised me and encouraged me to try this when so few (maybe no one else?) people were on this modality in India.




13 comments:

Zahid Hussain said...

I am Realy Impressed to see a Dialysis Patient like U. I always Think of the Hemo dilaysis Patient to give my best as Dialysis Machine Engineer or Life Saving Engineer.
I wish u long life and keep on motivating others to follow u.

vamsi krishna said...

I wish u long life and keep on motivating others to follow u.

Anonymous said...

Hi there,
I have also been doing home hemo for my sis since 2009...but not nocturnal daily.Your story motivates me to shift to daily nocturnal.
Good luck Boss..

kumar.

bpcsguru bpcs said...

Hello Kamal,

Inspiring to read your blog. I will like to talk you to know more about home dialysis. Can I have your contact number please.

Appreciate your reply.

Regards,
Krish

Kamal Shah said...

Hi Krish, please send me an email or give me your email address. I will send my phone number by email. Thanks!

bpcsguru bpcs said...

Hello Kamal,

Thanks for reply. My email id is bpcs.guru@gmail.com and personal number is 9502367776.

Regards,
Krishna

Ashima Uppal said...

Hello Kamal,
This is really inspiring. We are currently exploring options for a family and wanted to talk to you re the same since you have done PD as well as hemo.

Can you please provide us your number and a convenient time to talk. My email id is ashima.uppal@gmail.com

Thank you.
Ashima Uppal

Anonymous said...

Hello Sir,

I am impressed with your story. It is motivating and gives to patients and families with hope and options. Would you provide some more details about the home HD option that you used.

1. Where did you get the HD machine. We are in Bihar and we not able to locate any vendor who will supply/install this machine for us.

2. what brand/model# of RO machine you used. Would you provide some more detail. I am wondering why is 100lt/hour machine needed to be installed. would a smaller machine do the job

thanks

Razi

Anonymous said...

If it is possible, I would like to talk to you. my email address is mhhashmi@yahoo.com.

thanks

Razi

Ramya Akilan said...

Hello Mr Kamal

I have read your blog completely. I would like to discuss more about these stages since my husband is undergoing HD thrice in a week.

Yours truly is an amazing story and you are a true fighter and winner.
My email id is ramyakils@yahoo.co.in and my number is 9449957735.

Thank you so much Sir.

Regards,
Ramya

Nisha said...

I have read this blog thoroughly.... Over..Nd over...truly amazing... I wish my husband could do the same...I know it is not possible...I have even discussed this topic in finite times.. In vain...very happy for u that u are leading a meaningful... Full productive as u callit Life....best wishes...

Balu Mouli said...

Hi Kamal,

Hope you are doing well....

Since few years am on HD and full of frustration & hopelessness.
I saw my image in you. After reading your blog ,now i get some self motivation to live as better as possible.

Thanks & Regards,
Bala
9676893293

mohammed saddakhathullah said...

Hello sir, You have been showing people how to think, how to make things possible and live productive life.. may God bless you with great health and tremendous energy.
Best regards,
Dr Md Saddakhatullah Khan