Comments on Kamal Shah's Blog: If only someone else could worry on my behalf

That is a good idea. I must get in touch with some...

2009-11-12T21:19:30.841+05:30

That is a good idea. I must get in touch with some programs doing work in HUS, my native disease. The only problem might be - they might need people who they can see physically. But definitely worth a try.

I have a suggestion for what it is worth: If you ...

2009-11-12T08:52:03.560+05:30

I have a suggestion for what it is worth:

If you could link up with a medical college and be the Subject of a research project, then someone will keep track of all your parameters and their implications for several years (atleast 5 I would think). Is there a medical teaching hospital in Hyderabad with a good Nephro Dept where people do PhDs? Would Osmania or Gandhi Medical qualify?

Else, offer yourself to a place like Stanford Medical School or some such place, where someone there can keep asking you to take this test or that, have you report back on email or Skype, and even pay for the tests through the Research grant.

You're right Bhanu. One problem is that the do...

2009-11-12T07:12:40.385+05:30

You're right Bhanu. One problem is that the doctors here are too busy. They have so many patients that they have absolutely no time for personalized care. Even doctors who come across as dedicated simply have no bandwidth to look up the research and the latest developments in the case of individual patients.

This is where a doctors' bed side manner is so...

2009-11-11T21:20:42.862+05:30

This is where a doctors' bed side manner is so critical. I believe that 50% of what Doctors do is "Care". And that care is what will make them research and learn for their patients. I have had my share of doctors where I just feel confident that they know the best and where I feel I need to go on the net and research and go back to them.

I think the problem with most doctors in India is that they do not keep updated. They display the "Godlike" syndrome much more. Partly this is also due to lack of lawsuits. While there is a lot wrong with US suing culture...this is still one of the things that keeps everybody on their toes and doctors make sure they are doing the right thing.

Thanks Pam! I did get a transplant in November 98 ...

2009-11-11T20:46:46.892+05:30

Thanks Pam! I did get a transplant in November 98 but my primary disease recurred. I am thinking about another transplant but the problem is that the chances of recurrence are high. I am trying to find out if there are medicines that would prevent recurrence.

Kamal

My husband is a dialysis patient. He doesn't ...

2009-11-11T18:37:03.712+05:30

My husband is a dialysis patient. He doesn't like going 3 time a week and won't do it at home. He gets alot of cramping in his hands and neck. They say all his numbers are really good. They want him to get a transplant. Scarey though. He had a pancreas transplant in 97 and with the rejection meds havings his immue system low he caught cryptococcal meningitis and ended up loosing his transplant. There is so much to consider with a transplant. Have you ever thought about getting one. He gets so frustrated with the whole thing. You can't eat this you can't eat that. He takes chew pills after eating for his phosphous.

Hope things work out for you

Pam