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.
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.
Comments
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.
wishes and regards,
manish
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.
I have a technician who helps with my dialysis.
Kamal refer to this article.
We should try to get this machine to India.