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Back from the dead!

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Poirot:
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.

===========================

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

jay:
wow standing ovation to you Poirot !!
I don't know How Andy and other senior members and patient stick to this forum with so much pain when every second day if not every day new mother posts her first cry for help. I think stories like these are like knots on a rope to climb up.
I am so relived to know about Sofosbuvir (Sovaldi) that in India in January 2015 The Indian Patent Office in Mumbai declined patent protection thus opening the way for producers of generics to produce the drug for the Indian market. I mean how many in the entire world Or in entire thal community can afford $90,000 for three months of medication.

Andy Battaglia:
Poirot,

It is so good to see you posting again. You were the third person with thal that I ever met and our trip from Mumbai to Pune with Ashish is permanently etched inside my memory. In many ways, that Pune conference still reigns as my favorite conference, and the camaraderie is a big part of why that time has such a special place in my heart. It has been difficult following you through this new "adventure", having told only our one mutual friend, but always keeping hope that this time things would go differently than it had with our dear friend Panos. When you told me they found a liver, I just about went through the ceiling with joy. I know that can be the hardest part of this process and it happened so quickly that it renewed hope within me. Maybe this time, my friend would make it. I know it's been an ordeal and there will be future challenges. but I am overjoyed to see you here posting. And as happy I am for you, I find myself, as a parent, to be happiest for your daughters.

To our members, this is a time to celebrate life. A life that has had great influence on me and many others. I thought this most unfair that a man like Poirot, who has long ago put thalassemia in its place and gone on to have a great career and build a beautiful family, could be afflicted with cancer, after being such a model patient who has been an example to so many, but now again I see that Poirot has once again been a model of how to deal with the worst of the worst and overcome it.

Poirot, I salute your strength and will. It's been a long time since I dared have hope. Thank you for once again opening that door for me and thank you for remaining among us.

Dharmesh:
Dear Poirot :hugfriend
Well Done :thumbsup Bravo

I am shocked as well as happy after reading your post.
You are so lucky that you have such a caring and determined daughter. You have shown a path to other thals to fight with Thalassaemia.

Wish u speedy recovery !!

Dharmesh

zahra:
Congratulations to you and your family. We are proud of you. Thank you for being such an inspiration.
Zahra

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