Agree to Disagree

I'm planning to agree to disagree with many people.  It has been said here and been stated to me personally very recently.  I do not feel that dialysis and/or transplant are a treatment for PKD.  There.  I said it, and let the attacks come.  But, please, read why I feel this way and realize that you may also decide to agree to disagree--no matter your stand on what defines a treatment for PKD.

A treatment is defined as care provided to improve a situation--especially medical procedures or applications that are intended to relieve illness or injury.  Dialysis is used as a treatment for kidney failure.  Transplant is yet another step in treating kidney failure.

PKD is NOT kidney failure.  It is a genetic disorder characterized by the growth of numerous cysts in the kidneys.  These cysts continue to grow and eventually shut the kidneys down.  Kidney stones, frequent infections, cyst ruptures, extreme pain, high blood pressure.  These are just some of the symptoms of PKD that we endure long before the symptom of kidney failure is severe enough to merit dialysis or transplant.  My thoughts dictate that a true treatment would take care of the cysts causing the eventual problem of kidney failure.

I can't look my 13 year old daughter in the eye and tell her that she inherited this awful disease from me, but that in 35 years she'll have the option of dialysis as a treatment.  I can look her in the eyes and tell her that her participation in the drug study she's in will hopefully help.  That there is research going on to find a treatment.  That the time spent working for the PKD Foundation raises the money to fund research for a cure.  That I pray she doesn't endure the pain I do. 

A treatment would allow me to not have to ask my sister for one of her healthy kidneys.  Dialysis and transplants are treatments for kidney failure; NOT for PKD.  PKD is more complicated than that.  There are years of uncertainty leading up to the point of failure.  I can't live my life thinking, "Well, dialysis is a treatment, so I'll just wait until my kidneys fail."  I live my life thinking, "What can I do NOW to improve my life?  What can I do NOW to avoid dialysis?"

Take it or leave it, that's how I feel.  I will continue my fight for a better life.  I will campaign for a cure, but will settle for a treatment.  If not for me, at least for my daughter.  She deserves it.  She has put herself out there for 12.5 million of us PKD'ers!  Let HER be able to tell her children that there's nothing to worry about.