Living with kidney disease, dialysis and transplantation

My Kidney Failure Treatment Choice / What Everyone 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.

I've always said that I believe no one should blindly go forward with a kidney transplant until they are at the point in their thinking that they can and will accept all possible outcomes. I've known several people in real life, and dozens of others online, who've erroneously and desperately convinced themselves that having a kidney transplant will cure them. These patients think (wish? hope? need?) that receiving a new kidney will mean a "normal" life and things can go back to the "way they were". Sometimes, tragically, transplants do not go as planned and patients can then fall into deep depression and feel as though their life is over or no hope can be had for the future. What these patients never realized was that a kidney transplant is not a cure, it is merely one of many treatment options for kidney failure.

Not a cure, you say? Nope, sorry to disappoint, but a transplant is not a cure for kidney failure; this is the key point that I feel many patients miss. In fact, there is no known cure for kidney disease and very few known, proved treatments to combat the effects of kidney disease to prevent the kidneys from failing. Other kidney disorders, such as kidney stones, are more easily treated and rarely end in failure - However, MOST kidney diseases like mine end in kidney failure. While it is true that some people with kidney disease never do reach the stage of failure, my unprofessional opinion (based on my years of self-research and study) is that avoiding eventual kidney failure is rare.

Before I go on, let me give you some quick facts about what causes kidney disease and failure:

* Diabetes is the most common cause of kidney failure.
* Uncontrolled high blood pressure is the second most common cause of kidney failure.
* African Americans are 4 times more likely to get kidney failure than Caucasians.
* People with a family member with kidney failure are more likely to develop kidney disease.

I don't fall into ANY of those categories, yet I've had kidney disease more than half my life (and kidney failure for three and a half years) So, even though many causes of kidney disease and failure can be avoided (or lessened) some just happen, without reason, such as in my case. I call this my "hand of cards I was dealt in life" or "my number was up" whenever someone asks me why I have kidney disease or how I feel about it. And I really do feel this way. I've never asked "why me" I just first learned to accept it (which took awhile!) and then learned to live my life anyway. Making choices about how to treat it came much easier for me by having this attitude than I'm sure it has been for others.

There are several ways to treat kidney disease and failure. Many people who are diagnosed with inevitable kidney failure choose to treat their disease by receiving a transplant before they need another form of renal replacement therapy (i.e. dialysis) I know several people who have gone this route with very successful results - never needing dialysis! Others, for personal, religious or circumstantial reasons that outright disqualify them for a transplant (age, other health problems, etc.) never apply for a transplant and instead choose dialysis as a life-long, permanent treatment. Others, unfortunately, have no treatment options available to them and without treatment for kidney failure they pass away.

Which brings us to deciding which treatment to choose - or more specifically how I chose my treatment path.

I have always been keenly aware of my options, the possible outcomes and the long-term prognosis for each. I was lucky in that I had more than 12 years to "think about" my inevitable kidney failure and decide what to do about it. My choice was very deliberate and thoroughly thought-through and researched prior to the point in which the decision needed to be made.

As you all know by now, my choice was hemodialysis which I've faithfully attended since January of 2004. Many along my journey have asked me why I didn't want or why I didn't get a transplant from the beginning. My answer is as simple as my original decision: I didn't want a transplant at the beginning because I wasn't ready to accept all possible outcomes of what a transplant entails. Sometimes this answer confuses those who don't live with kidney disease or really understand what its like to have a life-long chronic health issue. For those of you unfamiliar, let me outline the possible outcomes of a transplant from worst (rarest) to best case (more common) scenario:

1. Death during surgery as a result of complications of the surgery or other contributing pre-existing health conditions.
2. Death as a result of a secondary infection caused by the There are several ways to treat kidney disease and failure. Many people who are diagnosed with inevitable kidney failure choose to treat their disease by receiving a transplant before they need another form of renal replacement therapy (i.e. dialysis) I know several people who have gone this route with very successful results - never needing dialysis! Others, for personal, religious or circumstantial reasons that outright disqualify them for a transplant (age, other health problems, etc.) never apply for a transplant and instead choose dialysis as a life-long, permanent treatment. Others, unfortunately, have no treatment options available to them and without treatment for kidney failure they pass away.

Which brings us to deciding which treatment to choose - or more specifically how I chose my treatment path.

I have always been keenly aware of my options, the possible outcomes and the long-term prognosis for each. I was lucky in that I had more than 12 years to "think about" my inevitable kidney failure and decide what to do about it. My choice was very deliberate and thoroughly thought-through and researched prior to the point in which the decision needed to be made.

As you all know by now, my choice was hemodialysis which I've faithfully attended since January of 2004. Many along my journey have asked me why I didn't want or why I didn't get a transplant from the beginning. My answer is as simple as my original decision: I didn't want a transplant at the beginning because I wasn't ready to accept all possible outcomes of what a transplant entails. Sometimes this answer confuses those who don't live with kidney disease or really understand what its like to have a life-long chronic health issue. For those of you unfamiliar, let me outline the possible outcomes of a transplant from worst (rarest) to best case (more common) scenario:

1. Death during surgery as a result of complications of the surgery or other contributing pre-existing health conditions.
2. Death as a result of a secondary infection caused by the immune system being over-compromised.
3. Death as a result of toxic levels of anti-rejection pharmaceutical levels in the body.
4. The transplanted organ (known as the "graft") is successfully transplanted but then never begins working, therefore requiring other Renal Replacement Therapy (RRT) a.k.a. dialysis.
5. Acute, early-onset graft rejection, ending in total rejection, and the need for other RRT.
6. Chronic graft rejection, eventually (over months, or years) ending in total rejection and the need for other RRT.
7. Re-occurrence of the original kidney disease that destroyed the native kidneys, eventually ending in the need for other RRT.
8. Short-term (less than 5 years) graft survival with an event or illness contributing to secondary kidney failure ending in the need for other RRT.
9. Long-term (longer than 5 years) graft survival with eventual secondary kidney failure ending in the need for other RRT.
10. Long-term graft survival with never needing additional RRT for the lifetime of the individual.

As this entry comes full-circle I will answer my own question: "Can I accept all possible outcomes of what happens tomorrow and in the coming weeks, months and years?"

YES I can. I'm ready, I'm at peace and I'm in a positive place. It took me a little over three years on dialysis to get here, but it was worth every treatment, every needle stick, every scar, every ache and pain and all the experiences of dialysis. Dialysis taught me that even if this transplant doesn't work, I can still live my life and continue being who I am. While I'm very optimistic about tomorrow, I am also realistic and I'll take what I get. Its out of my hands and into the hands of the doctors, and as some say, fate.