Living with CKD

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Dialysis Patients: Your Anemia Management Therapy May Make You Sicker

Recent USRDS (United States Renal Data System) data shows that at least 40% of ESRD patients currently on dialysis, and who are being treated with an anemia drug (such as EPOgen or PROcrit) have an actual red blood cell count above the FDA's level recommended for kidney failure individuals. More shocking: USRDS reports that at least HALF of the 40% have such a high level of RBC's  have a higher than normal risk of cardiovascular "events" (heart attack, heart disease, etc.) and mortality.  This is according to a New England Journal of Medicine article that was published in November 2006.

Anemia management is not a perfect science.  It seems that managing anemia could actually be more difficult than the process of determining an effective dialysis treatment/modality (also not a perfect science).  After all, each individual with kidney disease and failure has a different body type, as well as other conditions and diseases which might interfere with managing anemia.

On a more personal note, I have struggled with managing my anemia for six years (or two years prior to my starting dialysis)  The biggest struggle has been keeping my "numbers" from roller-coasting too high to too low.  Because of a particular resistance to typical anti-anemia medications (such as Epogen and Procrit) if my blood count gets too low, it will continue to drop even when I'm given increasingly larger and larger doses of Epogen.  Then, the exact opposite happens - about 4 weeks of painfully low (not to mention, painfully physically exhausting) I suddenly "spike" my numbers to not just above the recommended levels, but MUCH MUCH higher than normal levels - i.e. higher than even a 'healthy' person!

I never thought much about being "not anemic" as a bad thing, in fact, I was happy whenever my numbers were so high - I had all the energy in the world, my treatments went better and I got more done in a day and more sleep at night...

... that was until, in November 2006 I was diagnosed with heart disease (albeit very minor, but still not normal for a 30 year old!)  a few weeks later I was surfing the web and found an astonishing amount of information that linked higher-than-normal blood counts in ESRD individuals and to a higher risk of cardiac problems and disease.

You can bet I wasn't happy to think that not only was I dealing with kidney failure, but (mild) cardiac disease.  I thought back to all the times when my blood counts were high and how great I felt and really realized that I had probably done myself damage for always questioning my anemia management nurse's suggested doses.  I was so afraid of the "roller-coaster" that I always asked to be given the largest amount allowed by Medicare and my doctor.  In all fairness I have to say that I pretty much disregarded all the information they supplied to me about problems that could occur (none of which at that time listed heart disease) such as clotting of my access, the burden of the increased fluid volume and the probability of clotting the dialysis machine (which I've done on a few occasions) because my blood was too thick.  Did I listen?  Yes.  Did I stop and let go of trying to be the decision maker for ALL of my care?  Nope.  And that's where I went wrong.

This new information about blood levels of an ESRD individual being too high and now associated with heart disease is something we can't ignore.  As almost any kidney patient knows, cardiac episodes are the leading cause of death in dialysis patients, NOT the kidney failure itself.

We MUST encourage our health care providers to re-examine the recommended levels and come up with a plan.  I think all of us have enough on our plates to deal with, who wants another?

Little Green Ribbons and Thank you's

OK, I'm eating my very last bit of anything for the next few days. I'm not supposed to eat anything after midnight (ok, so its 10 past and I'm eating a Popsicle but that hardly counts, right?) I think I'm almost ready, the only thing left is to pack a little bag, which will take less than 4 minutes since I don't really need a lot (oh, other than my laptop and camera)

...18 hours until my kidney transplant / Daily Photo

Only 18 hours until my kidney transplant - I'm nervous, but I'm still blogging!

My Kidney Failure Treatment Choice / What Everone Should Know

I have a lot of things to say, today - all relevant to tomorrow. I hope you'll read this and really try to understand what it all means. I feel its important not only to my friends and family, but to others who might be facing the same decisions in the near future.

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