Saturday, May 26, 2012

Give me the NxStage System One. I will not even ask for Eculizumab.

I read this blog post yesterday by Sharon Whipkey about going on a holiday to Italy to her daughter's house. Sharon  went with her NxStage System One, did not have to miss her regular dialysis, did what normal people would do and probably, did not have to watch her diet and fluids! Sharon says, "It is a small miracle to be a dialysis patient and travel any where without going in-center for therapy."

So true!

The fortunate people of this world who have access to the NxStage System One are living their lives fully without any restrictions on travel. Yes, I am happy for my access to nocturnal dialysis and the ability to lead a normal life in terms of work, exercise, diet and fluid. But, like all humans, I am greedy. I want more 'normal' too! I want the ability to travel unhindered.

My parents are back from a fantastic trip to Darjeeling and Gangtok. I had half a mind to go. The problem was the usual one. The closest dialysis center was a good three hour drive away from these places. Not only that, I would need to dialyze in-center and that too not daily. Which means I would have diet and fluid restrictions. Which means my holiday would suck!

To me a holiday is not a holiday if I need to watch my fluids and diet. A holiday is not a holiday if I need to spend 4 - 5 of my waking hours on the dialysis machine every other day!

The NxStage System One solves all these problems. You can get nocturnal dialysis on a holiday in the comfort of wherever you are - a hotel room, a friend's house or even down a river!

The thought that is going through my mind at this point is this: Give me the NxStage. I will not ask for Eculizumab.

Eculizumab is the only way I can get a successful transplant. Without Eculizumab, I cannot opt for a transplant because my primary disease atypical HUS will recur (90% chances). With Eculizumab, the chances of success are 90%! The drug is not available in India and even abroad, the cost runs into crores of rupees.

However, I promise, if you give me the NxStage machine, I will never ask for Eculizumab. I will not ask for a transplant. I will happily spend what's left of my life on this machine. I swear.

13 comments:

Thrinath Chakravarthy Jalamadugu said...

Kamal! Can't you import it? Is the cost that is stopping you or something else?

And btw, i googled to see how NXStage looks(in size for portability) with a query string "nxstage system one india" and the top 3 results were pointed to you blog site. Thats great.

Kamal D Shah said...

More than the cost of the machine, it is the cost of the consumables and the problem of repair and maintenance.

milligram said...

i agree with you mr kamal but do not lose hope. if u can import and are ready to take initiative. repair and maintenance i can help in whatever capacity i can.

wishes and regards,
manish

Unknown said...

Hi Kamal,
Is this machine available in India now in 2013? If yes , what is the cost ? If you are doing dialysis at home using this machine, how does one monitor important parameters like BP, Pulse etc? Does this require a nurse to be present while doing dialysis?

Please let me know.

Kamal D Shah said...

Hello Anonymous, no this machine is not yet available in India. I do diakysis at home using a much larger, non-portable Fresenius machine.

I have a technician who helps with my dialysis.

Anonymous said...

Hi Kamal, What is the cost of NxStage's System One machine??

Kamal Shah said...

There are 2 variants - one costs about Rs. 8 lakhs and the other Rs. 11 lakhs (converted to INR). Of course, these are not yet available in India.

Anonymous said...

Is this with supplies?? If not, do you have any idea of the total annual cost of treating dialysis via a NxStage machine (USD would do)?

Kamal Shah said...

No. No.

Sandeep Kudtarkar said...

http://www.yourhoustonnews.com/humble/news/portable-dialysis-system-improves-quality-of-life-for-humble-man/article_27d88062-849e-5cb8-92bf-dd471933ef54.html

Kamal refer to this article.

We should try to get this machine to India.

abdullah khattak said...

i think this machine would have came to india and u will be using it and enjoying u r time. i need this nx stage machine in pakistan for my brother , could u give me any link ? how could i manage supplied for regular dialysis ? cost ? incase of fault ? refurbish able ?

Kamal Shah said...

I have not yet got the machine.

MySimpleWalk.com said...

I strongly disagree with "unhindered". My Hubby has been on dialysis for over 4 years. He started with peritoneal and after life threatening complications at the 1 year mark, did in center and then we trained for home hemo-dialysis on a nxstage machine. Traveling, even if the nxstage machine is hard! The machine weights a lot, portable is a very relative term. It takes both of us to carry it and load and unload it. Then there are supplies. Let's say we want to travel for 7 days. Hubby does dialysis 6 days a week using 40 ltrs of dialysate a day. So he would need 4 boxes of premixed dialysis per day to travel, so that is 24 boxes, plus 4 to 8 boxes for emergency back up. So now we have the machine and about 30 boxes. We need a shares box for the needles, and all the supplies for the machine, including saline and cartridges. So we are talking another 5 to 6 box of supplies for a 7 day trip. If we travel by plane we have to figure out how to get the machine and 35 or so boxes to the airport and on the plane. Don't forget he will still need to do a treatment that day and with set up and clean up that is 6 hours a day. Do you see how quickly this gets complicated? Now if we travel by car we need to rent something to attach to transport everything or plan ahead and have as much as possible shipped to the location. It can be done, people do travel with the nxstage machine, but I think it is totally unfair to say it's unhindered. Hubby hasn't seen some of his family in years because it is too hard to travel with his machine.