I saw Dr. Jan today and we talked about a plethora of topics… family, love, relationships, death… just to name a few. It amazes me when I think about the number of different thoughts that run through my head at any given time. And I guess that’s why I’m starting this blog because I need to get these thoughts out and maybe they will even help someone else.
Believe it or not today we spoke a lot about other illnesses and My heart goes out to anyone who is dealing with any sort of illness. Not only is it hard on the patient it is hard on the caregivers as well. I can’t imagine what my family goes through. I know they feel helpless.
So, as I sit on Dr. Jan’s couch crying in anger I realize I am annoyed at how much attention other illnesses get as opposed to Kidney Disease. When you walk into a room you can often tell if a person is battling cancer but the truth is, you wouldn’t be able to pick out the person suffering from kidney disease. People see me and tell me how fabulous I look and although I appreciate the compliment, I wish people could see my insides. I have three kidneys now and none of them work. I am dealing with a disease that ultimately could take my life. My left arm has permanent bumps due to the fistula and bruises that come and go depending on how dialysis goes. I wake up dry-heaving and vomiting in the middle of the night so bad that I pop blood vessels under my eyes. I need to make sure to watch my fluid intake, nausea has become a part of my daily existence. These are only the physical side-effects. I haven’t even touched on the mental effects.
I brought this up with Dr. Jan because I feel guilty about the anger I have towards the lack of attention CKD receives. Chronic Kidney Disease (CKD) effects an estimated 37 million people in the U.S. (15% of the adult population; more than 1 in 7 adults) and approximately 90% of those with CKD don’t even know they have it. 1 in 3 American adults (approximately 80 million people) is at risk for CKD.
Currently, there are over 93,000 people on the kidney transplant waiting list. The wait for a deceased donor could be 5 years, and in some states, it is closer to 10 years. Patients are prioritized by how long they’ve been on the waiting list, their blood type, immune system activity and other factors.
I know I still have a voice. I know there has to be a reason that I am enduring this hell. Maybe it is my “job” to blow up social media and talk to people about CKD.