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.
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You're absolutely right!
ReplyDeleteNow what?
Expressing your frustrations are assuredly therapeutic for you. It's healthy to do so.
But it doesn't change reality.
I don't like a l;ot of things.
Some I can change.
Some I can't.
WHat's your next move?
Peace and Blessings!
Coach Richie Perl
http://www.InnerGameOfPKD.com
it sucks.. for real!
ReplyDeletefrom the age of 2 I too suffered with Pain, though I had some docs that told me it wasn't related to the disease ( yah right) and I had others when I was 12 that told me live with it, it's your life!
I've received a kidney, lucky was i my 1/2 sister was not only healthy but compatible, after a year on bed rest taking so much pain med I couldn't leave the house we finally got a surgery date, transplants not a cure either, although my creat is better my thoughts aren't my daughter now 15 has it too.. I know I'll need another transplant,if I live long enough.. the fear of complications afterwards sucks almost as much as the stones and the pain and the infections during! well I wish you luck, I wish for a cure and I keep the picture of my 2 kidneys that were removed that together weighed 18lbs.. as my desktop, to remind me that even when it gets bad these days, it can't be as bad as when I had those disgusting things inside me!
God bless you and your daughter. And thank you for sharing your journey with us.
ReplyDeleteI sooo feel you on every word you said!! I have PkD..almost my entire family has it from my mother side..and just found out that my two year old inherited from me..I feel awful...I'm done with crying, It won't solve anything and yes...dialysis and kidney transplant are not cures for PKD....but what can we do about it!! researchs are being done....no cure yet but let's just continue with our faith that a cure will be found especially for the young ones that are inheriting this horrible disease...Just the thought of my baby being in pain horrifies me...but yes I totally agree with you...
ReplyDeleteI totally agree with you too.
ReplyDeleteI so agree with you. I was just talking about this the other day on my blog. I don't understand why people feel that dialysis is a sensible option, and we should be okay with it. It's frustrating. I've just began blogging as therapy through this storm. www.acceptserenity.blogspot.com.
ReplyDeleteThe mixture of Olive Oil, Lemon Juice, and Raw Apple Cider Vinegar is most helpful Natural Remedies for Polycystic Kidney Disease stones. Blend 2 ounces of organic olive oil with 2 ounces of organic lemon juice.
ReplyDelete