Having chronic kidney disease (CKD) has been a journey of learning, coping, re-learning, having to accept less as a norm, grieving, and rebirth.

I have been living with CKD for 27 years. I have learned that you have to be your own advocate: learn all you can about the disease, treatments, protocols/algorythms by which your care is dictated, even if that doesn’t fit your life style or your hopes or your definition of quality of life. The one I seem to be continually battle for is the dosing of one of my medications to keep my hemoglobin up: Aranesp. I was recently told to hold my usual dose, which I did just to humour the HCPs(health care professionals ). This was after I had advised them that I can’t not have this as whenever the dose is decreased or held, my blood count crashes to the point of needing transfusions. ┬áSo, now I am back on my previous dosing, but have to play catchup for the next while. Why can’t HCPs just listen to the patient who generally knows their own body better then they will. After all, I’m the one living with this condition.

I must say, that having CKD has provided the opportunity to practice patience! Not being able to do as much as before, makes you rearrange your life & prioritize your actions to spread out oner days so as to not get too wiped out and then be out of commission for longer that you want. The other thing you learn with time, is what is really important in life. You don’t get caught up in the superficial things of life and you can easily skip things like going to so many “in” things which provide nothing for your life or your soul. I talk of things like “parties”: friends just doing their thing to make a bit of cash on the side, but in actuality, these things are distractions to what is really important in life . When you know your life is limited, you start to analyze your needs/wants.

Another aspect of living with CKD is the appreciation for family and friends that are active in your life. All the little things that my husband does for me: running out at night to buy some tempura shrimp because I never have much of an appetite, emptying my dialysis bags, turning on my electric blanket at night to make sure I’m warm, helping me with my never ending itchy skin: lots of rubs with aloe cream, as well as accompanying me to as many events that are important to me as he can stand :). My daughter also has been a true blessing as well: all the while she grew up, she knew nothing other than a mom that was sick a lot and in and out of hospitals. The price my family pays for my CKD is a cost that comes from the heart.

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