Hi all:
A quick update from my side:
I was diagnosed with primary liver cancer in Sept 2014r, after I visited a hepatologist to get an update on my liver condition and status of sovaldi mfg in India. Old members here would know that I have had chronic Hepatitis C since a long time. My guess is that I was infected before 1992. Anyway, after some tests, a liver MRI led to the diagnosis of HCC, with three tumours, one of which was quite large.
Meetings with various liver specialists resulted in an uniform conclusion: I needed a liver transplant. Without it, my median life expectancy was 9 months, and zero at two years.
Long story short - after running around like mad - I was extremely fortunate to receive a liver transplant from a deceased donor at Apollo hospitals, Hyderabad (I had registered with the program at Apollo, Chennai). This was in November 2014, and three months later, I can now say that I am on the path to recovery. Still a long arduous path though - doctors do not consider any liver transplant successful until 12 months post transplant. And, the immunosuppressant drugs that you have to take leave you open to infection - so you have to take a lot of care.
Interestingly enough I found that India now conducts the highest number of liver transplants in the world per year - around 1,000 or so per year, across various hospitals in Delhi, Hyderabad, Chennai, Bangalore and now Mumbai. Of this, about 850-900 are living donor transplants, while the balance are from deceased donors. I had a major difficulty with getting a living donor (only relatives allowed to donate, and you need a blood group match) and so consider myself very fortunate.
I have to really thank my elder daughter for this outcome - she insisted and insisted that I do whatever it takes to get a transplant. I was quite ambivalent about getting one given all the associated issues (it is one of three most major surgeries that you can have), including costs. My girls were nearly settled, and there was sufficient money left for the rest of their education costs - and my family had a house that was fully paid for! And, I had at least 9 months to put all my affairs in order.
And, then I have to thank my wife and my younger girl for their huge support and care during this process - when I was essentially bed ridden and needed terrific care about food, water, cleanliness and medicines. The stress and strain put on the family is huge post surgery - couldn't have done this without any of them, especially given that my younger girl is now giving her 12th grade Board exams.
And, thanks to Andy and Shilpa for all their kind wishes.
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Lessons for those with Hepatitis C:
1. Please, please ensure that you get an ultrasonography of your abdomen every six months - this is a cheap, quick, painless procedure, which will tell you quite clearly if there are changes to your liver texture. One of the surgeons I met, who had relocated after practicing at Pittsburgh, PA, USA (one of the leading liver transplant centres in USA) said that he was shocked I was not on this preventive measure, given my chronic Hep C infection. If changes are detected early enough, there may be other options to deal with liver disease for you - once it becomes cancer, then you have really limited options.
2. If you can get Sovalidi and have the insurance for it, do NOT wait - get it now. This will save you a lot of grief later. New data is showing that Chronic Hep C leads to liver cancer in 25% of cases (not 5-6% as they were estimating earlier) and cirrhosis in 40-50% of cases. In US, new data is showing Hep C as the leading cause of primary liver cancer. In India, Gilead is expected to tie up soon with a couple of manufacturers to produce Sovaldi locally - this is likely to be available at equivalent of US$800 for the treatment course (1% of the US costs) - once it becomes available, make sure you get it IMMEDIATELY.
Poirot