My Kidney Failure Treatment Choice / What Everone Should Know

Krissi's picture

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, proven 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 immune system being over-compromised.
  3. Death as a result of toxic levels of anti-rejection pharmaceutical levels in the body.
  4. Inadvertently receiving a transmittable disease or virus from the donor, ending in graft rejection or further damage to general health, up to and including death.
  5. 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.
  6. Acute, early-onset graft rejection, ending in total rejection, and the need for other RRT.
  7. Chronic graft rejection, eventually (over months, or years) ending in total rejection and the need for other RRT.
  8. Re-occurrence of the original kidney disease that destroyed the native kidneys, eventually ending in the need for other RRT.
  9. 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.
  10. Long-term (longer than 5 years) graft survival with eventual secondary kidney failure ending in the need for other RRT.
  11. 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.

I love you all.

MK Visitor's picture

Thanks for saying all this, and let me say, I'm glad you're in a good place for your surgery! Honestly, I was expecting more energy and such than I got. I heard SO many people say how much better they felt, and I just... didn't feel hugely, amazingly better. Maybe I got my transplant too soon, and should have been sicker first. ;)

MK Visitor's picture

Jess, you have been an amazing inspiration to me. I know that you did all the preparation you possibly could before your transplant so you're a great example of the way it SHOULD BE DONE. You didn't get your transplant too soon (after all, you have had to deal with these issues your WHOLE life, whereas I've only been dealing with them for 16 years) and I really hope how you feel now is, although not exactly what you expected, healthier and happier for you and your family. Three cheers to the rest of our lives on anti-rejection drugs! :)

MK Visitor's picture

Krissi -
Wanted to remind you that you are in the thoughts and prayers of a lot of people. I'm glad that you have made the best decision that you feel you can make.

Prayers and Blessings to you and your brother.

MK Visitor's picture

i am an iga kidney patient.how about you?are you ok now?best wishes for you.

MK Visitor's picture

i was a diabetic since age 5 for 39 yrs i was a diabetic and on paritinal dialysis at home i went 5 yrs on it and it took me a yr of testing to get me on the list and 4 yrs waiting but fianllly it happened jan 31 st 2007 i recived a kidney and pancaraus and am doing great glad i made the desision to go thru it

MK Visitor's picture

Krissi

I do agree with the fact that a person needs to be in the right frame of mind for any major surgery and especially a transplant. I also agree with most of what you said, but when my BUN and Creat. started to really fall quickly, I wanted a transplant as soon as possible. I had plans and I was not willing to let my kidney disease stop me. Unfortunatly things did not happen the way I wished they would. If I had not already planned and was ready for a transplant, I surely was after my first dialysis treatment out of the hospital in a center. Dialysis was the worse thing I have ever had to go through in my life next to almost passing on twice. Everyone is different and needs to do what works for them. I just can not believe you would go through three years of dialysis before you were ready for a transplant. For a patient whose only choice is dialysis I feel very sad. In their case dialysis is only a prolongation to death. Dialysis may make patients feel somewhat ok for the short term. But for the long term dialysis kills the body systems. I was in a center for 10 months and in that time I watched patients around me get sicker and sicker until they died. Each death I experienced made me even more wanting of a transplant.

Just one old mans opinion....

Krissi's picture

"I had plans and I was not willing to let my kidney disease stop me."

I have/had lots of plans in my life and I've never let CKD or ESRD stop me - never! I don't believe either is a reason to "stop living" or to "live less", or for that matter, let anyone expect less of me as a person.

"I just can not believe you would go through three years of dialysis before you were ready for a transplant."

Why is that so hard to believe? I was honest with myself and my emotions regarding transplantation and I knew I wasn't ready. I think waiting until I was ready was the healthiest and wisest choice I could've made. Any other choice would've been foolish.

Just because I made those decisions, in no way means someone else should decide in the same way I did.

But for the long term dialysis kills the body systems.

Dialysis is a life-saving alternative to DEATH. Dialysis, as well as transplantation, is a treatment to kidney disease, not a cure - and of course, it's not perfect.

I personally know several people who have lived for decades on dialysis and have been successful because of their determination and compliance.

Dialysis is about LIFE, not DEATH.

MK Visitor's picture

My mom just started dialysis a month ago and ever since she lost her smile. i don't know how to make her understand that this isn't a sentence to death but rather a ticket to a few more years...it really helps me to read how you're all dealing with your problems and how you always see the positive part of everything.
Thank you for that...

Johanna Bartley

MK Visitor's picture

Biochemically, it is typically detected by an elevated serum creatinine. In the science of physiology, renal failure is described as a decrease in the glomerular filtration rate.

MK Visitor's picture

My opinion is that go for a kidney transplant if a donor is available; the risks ot the kidney transplant are no higher than other forms of surgery, and success rate is very high. Compared to be constantly on a dialysis machine, the quality of life after a transplant without dialysis is much better. Good luck.

MK Visitor's picture

Renal failure or kidney failure is a situation in which the kidneys fail to function adequately. It is divided in acute and chronic forms; either form may be due to a large number of other medical problems.

MK Visitor's picture

I didn't know that kidney surgery had all those dangerous effects as a possibility. I think I would stick with hemodialysis. Our dog had kidney problems so I know how hard it is.

MK Visitor's picture

Renal failure or kidney failure is a situation in which the kidneys fail to function adequately. It is divided in acute and chronic forms; either form may be due to a large number of other medical problems.

MK Visitor's picture

Before the advancement of modern medicine, renal failure was often referred to as uremic poisoning. Uremia was the term used to describe the contamination of the blood with urine.

MK Visitor's picture

Hello Krissi,
thanks for your informing and inspiring article! I hope you keep on being so positive and strong.
All the best for you!
Sonja

MK Visitor's picture

never let CKD or ESRD stop you!

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