The three mistakes of my life - 2

Effigent, the company I worked for, had offcies in India and the US. In the US, the office was in San Jose in California and in India, the offices were in Hyderabad and Bangalore. I worked from the Hyderabad office. The US office had a small team because they primarily interacted with customers, got new business and co-ordinated with the Indian teams on the deliverables. The bulk of the work was done in the Indian offices which had a large number of people.

When I was on PD, there was a thread that I started about me going to the US. For me, there was only one reason to go to the US. Better medical care. I was convinced that the medical care in the US was better. I had interacted with doctors in the US who were experts on my disease and found that they were very dedicated to their profession and did a lot of research in their field. Yes, the system has its own set of problems but compared to India, especially when it comes to rare diseases like atypical HUS, the US is definitely a far better bet.

Obul, the CEO of Effigent thought it was a good idea to do this. From the company's standpoint, it may not have been ideal, however, because I was fairly critical to the operations in India.

We discussed this at length and agreed to chalk out a transition plan where I would hand over my responsibilities to someone here and then eventually move to the US. After a few weeks however, we could not find a suitable person to transition to. We then had another discussion where we dropped the idea.

The whole thing came up again in 2006. I was on daily nocturnal home hemo by then. I was desperate to travel freely again. I got to know about the NxStage System One, the portable home hemo machine. This was available only in the US. I wanted to use this machine really badly. I started the 'move to US' thread again. This time around too, everyone agreed. I started the processing of my US visa. After a lot of hitches, finally, I got my US visa. The hitches however, caused a lot of delay. The company was beginning to face financial problems. Another resource could not be afforded in the US. Slowly, this plan withered away too.

For me, the lack of decent travel is punishing. I thrive when I am travelling. I can travel now but only on short trips. And even on those trips, I need to restrict my fluids and diet. And if you have to do that, it is not too much of a vacation!

The second big mistake of my life was not to push Effigent hard enough to move me to the US. It was possible. It would have given me access to the NxStage portable hemo machine. It would also have given me the ability to use Soliris, the new wonder drug for aHUS. It would have given me a better shot at a transplant with enough plasmapheresis that would have prevented the aHUS from recurring. It would definitely have improved my quality of life either with a transplant or with the NxStage machine on hemodialysis.