Like I said a few weeks back, if it was only the dialysis I had to deal with, it would be really all right. Its the whole set of side effects that puts me off. At one point, it just becomes too much to deal with.
Take PTH, for instance. Many people on dialysis have secondary hyperparathyroidism - the Parathyroid Hormone (PTH) levels increase in the blood. This is associated with many side effects. It also affects the levels of Phosphorus and Calcium in the body. Each of these have their own effects.
My PTH levels skyrocketed a few months back to over 1000 (the normal is less than a tenth of that). My nephrologist started me on cinacalcet, supposed to be a wonder drug for secondary hyperparathyroidism. Within 6 weeks, my PTH levels were normal. But my nephrologist said that for people on dialysis, it should be a little above normal. So, he asked me to stop cinacalcet. And then take a reduced dose.
Happily, the PTH level rose again, first to 353, after which I increased the dose further and yesterday it was 642. Yes, I know, increase the dose again, you would say. But it can be quite tiring to keep thinking about this. Especially when there is no standard protocol for most of these conditions. Every human being is different and there are no established patterns for many of these co-morbidities.
It would be so nice if my doctors would worry about these conditions, read up on the internet and then confidently prescribe whatever is necessary. It would be so nice if I did not have to bother about the long term effects of having low phosphorus and high PTH levels. It would be so nice if I could leave everything to my doctors and be cocky that I am in the best hands!
Comments
Hope things work out for you
Pam
Kamal
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.
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.