If only someone else could worry on my behalf

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!


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

Kamal D Shah said…
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.

Bhanu said…
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.
Kamal D Shah said…
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.
Unknown said…
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.
Kamal D Shah said…
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.