Thursday, October 16, 2008

My home hemo journey - 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.

8 comments:

preetik said...

Hi, I just came accross your blog while I was researching on the net about home hemodialysis.
Kamal, you have accomplished so much. YOu are a source of inspiration to fellow dialyzors.
Well I am the wife of one such dialyzor who has been on hemodialysis for 7 years now. I want hime to switch to home hemo but i have no clue as to how to go about it. First of all i would really appreciate it if you could give me the breakup of all the expenditure i will incur for the machine, Ro plant and the accessories. And also would it be possible for you to give me the contact details of the company to get the machine from.
There are a million queries running inside my head but i guess those will have to wait for now.
Regards,
Preeti

Kamal Shah said...

Hi Preeti,

Please send me an email at my email address kamalshah20@gmail.com and I will send all the details to you.

Thanks
Kamal

mukulji said...

Hi Kamal, I wish you a wonderful life ahead. My father is a similar case and he is currently on PD with Baxter and I wish he can have it going for the longest time, however in case of an eventuality ,I would like to have the information regarding home dialysis ready. What is the cost? and how difficult is it? I am going to ask my father to go through your blog. He is a poet and i have not seen him work harder in my life then what he is doing right now, so I hope he continues with this as long as he can. Thanks and you take care.Lovingly. Mukul Rawat

Kamal D Shah said...

Hello Mukulji,

I can send you whatever information I have. Please send me an email and I will send you whatever information you want.

Thanks
Kamal

abdul nasar said...

Dear Kamal Shah

Really inspiring. I am a volunteer of a social organisation from Kerala and were searching for detailed information on home dialysis. I would kindly request you to provide some more details on costing side. How much the machine costs?. What would be the daily cost of all required medicines etc? What other costs will be involved.
I have many people around me who are struggling themself with the clinic based dialysis and many of them may afford the home dialysis. You can write to me on abulhana@gmail.com.

Your blog is so precious and informative and motivational. Please keep writing. I would kindly take your permission to circulate your blog contents to all my mail contacts

Thanks and regards
Abdul Nasar

Anonymous said...

Hi kamal nice to see you on the Blog. it is such an useful blog. Kudos to you.
moreover my dad is currently in the beginning stage of dialysis. Can you please suggest the mode (whether PD or HD) of dialysis, kindly give me details to carry out home dialysis. charges that could be incurred. My email id is princefrancis4@rediffmail.com.
Regards
Prince

Shravan Vasishth said...

So Kamal, it is 2012; how is the home dialysis going?

I've been on dialysis since Nov 2011, and am now thinking of switching to home dialysis. Here in Berlin the infrastructure is very good for that kind of thing. The main worry I have is cannulating myself; I don't have the balls to do that. Maybe I just have to try it. My wife could in theory do it for me, but it's going to be scary for her too and I'm not sure I should put her through that.

I have another alternative available: nocturnal dialysis in a clinic, but three times a week. I don't think I can do nocturnal dialysis (I doubt it's even allowed here). Not sure if it's going to give me a significant advantage if I dialyse 4 hours daily (28 hrs/week say), vs, 8 hours three times a week at night (24 hrs a week). My situation is not yet that desperate, my kidney (or rather, my father's kidney) is still producing normal amounts of urine. It just doesn't do its job (well, it's a 27 year old transplanted kidney, and it is 85 years old).

If you have any thoughts on what the better route is (night dialysis in clinic, home dialysis) I would love to hear about it.

One disadvantage of the clinic is that one is at the mercy of the nurses. They have screwed up things more than once; last Friday a nurse put a band aid on the needle site with dried blood from another patient on his hands. I was disturbed this whole weekend about it. I spoke to the doctor about it, and she just apologized. With home dialysis I could eliminate this kind of sloppiness from my life.

Kamal D Shah said...

Shravan, can you please send me an email and we can continue the discussion there.