Does being diligent about my health really help?

Yesterday, I met a fellow dialyzor. This guy goes to the same hospital I used to go to when I was in-center. What started as a social meet-up with a couple of other pee-ers (defn. - people with healthy kidneys and able to pee!) drifted time and again to comparisons between both of us.

This guy is really amazing. He has been on dialysis for about twelve years now. He had an unsuccessful transplant about ten years back. Pretty much the same story as mine. Currently, he dialyzes only twice a week. He does not exercise. He takes no medications except for a small dose of a sedative at night. No EPO either. He rarely consults a nephrologist. Despite all this, he has absolutely no co-morbidities (side effects of long term kidney disease). His hemoglobin is 16 (the higher end of normal and he takes no EPO!).

Compare this with me. I dialyze every week day for seven hours on an average. I go for a swim every day. I take all my medications on time. I rarely, if ever, miss a dose. I consult with my nephrologist (often more than one) every month without fail. I am also in touch with some nephrologists over the internet. I constantly read up about my condition on the internet and actively participate in the online forums on dialysis. Despite all this, I have all but one of the co-morbidities associated with kidney disease. My hemoglobin is around 12.9 after all the EPO I have taken and continue to take.


Look at this guy. He is not bothered about his disease at all. He is living quite a normal life. He does not even work. Not that he can't. But he does not want to. Dialysis is a small part of his life. I am thinking about my health all the time. I am constantly getting stressed trying to balance my life between work and my health and trying to find moments of happiness in all this madness.

Does this make any sense? This set me thinking. Was all this effort in staying on top of my health really worth it?


"a couple of other pee-ers (defn. - people with healthy kidneys and able to pee!"

Bill Peckham calls them "urinators."

Your friend is very lucky and unusual in the way that his CKD5 has manifested. The majority of us are more like you, with comorbidities and struggles.

Have your iron levels been checked recently? Without enough iron EPO will not help your hemoglobin level.

Best wishes for a healthier 2010.

Kamal D Shah said…
Hi Miriam,

My iron levels are normal except for the Ferritin which is way above normal. My Hemoglobin is now quite good - in fact the nephs say I should reduce my EPO as the target for dialyzors is between 10 and 11.

New year wishes to you too Miriam!

Unknown said…
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IGA Nephropathy said…
Hmm. I guess he is not worried because he did not have problems. Probably there are others who had such attitude but their bodies were not so cooperative and are not around to tell us about how they were still able to conquer. There is surely a large effect that mind has over body but in cases where we reach dialysis...I would presume that it is mostly the body that dictates things. I do not know the other history of how he ended up in dialysis but I think the only thing that can be gleaned is to not worry I guess ...but beyond that we just have to do what comes to us naturally (which is to become psuedo doctors) and what attention our bodies require.