Board Member Nieltje Gedney wrote for Kidney Blog “Drive Thru Dialysis”
Member Carla Hagood wrote:
I will go ahead and apologize for the length, it will be long. Many aspects in my mind I want to touch on here. I’ve been reading about all the problems people are having with their clinics and getting the iron they need and so forth. I had my clinic appointment today and the Neph (Nephrologist for those that are unaware, is a kidney doctor.) evidently had plenty of time and spent it talking with me. We went over calcium levels, pth levels and phosphorus problems and the entire gambit of things associated with ESRD. (End Stage Renal Disease) So as I’m leaving and his words still echoing in my ears about quality of life, I’m thinking, what does he know about my quality of life. Isn’t QOL all relative to the individual? I realize that medicine tries for the one size fits all but that isn’t how life works. Just look at us as individuals. I also know that when he walks in or gets ready to walk out and says, “so how are you?” all he really wants to hear is, “I’m great” so he can move on to the next person. I also realize that I have an exceptional Neph. He really does care and he really would sit and listen if I actually told him what I really feel. Yet at the same time, I understand he is a medical professional and his mind is filled with lab results, length of time on machine, how many days am I dialysing, and so forth, that IS his profession, his job, and his main concern. What he doesn’t realize is that we, all of us dealing with this condition are in the same situation yet with very different degrees. Our ‘NEW” QOL cannot in any way shape, form, or fashion be compared to our old way of life. So how do we rate QOL for ourselves? By the number of smiles we can conjure up in a day? How many hours we can go before we have to collapse in a chair or bed out of pure exhaustion or fluid gain? That is what it has come to for most of us. YET, what I remember in MY life that the dialysis clinic and medical professionals have NO clue is what QOL USED to be FOR ME. Just like everyone else on dialysis does. I remember I found out about my kidney failure on August 14, 2007. I remember because it was my 40th birthday. What NO ONE understands and I can never explain this to a point that they fully comprehend what I am saying. They hear me but they don’t comprehend. On the 12th of August, I owned my own business, I cleaned homes, not just a cleaning service, but I also cleaned outside as well. I powerwashed homes as a add on service to having your home cleaned inside. What good is the inside to look good if the outside looked shabby? Why tell you this? Do you know how heavy a power washer is when you try to move it? My customers loved that service, because when other servicers charged thousands of dollars, I charged by the number of stories a house had. One story home cost $300 and if you had me clean the inside of your home it ranged from $150 to $200 for the power wash as well. Needless to say I had PLENTY of work. I was a one person business. SO, I worked 4 to 6 days a week alone. This means not only did I clean the entire inside of a home I also power washed the outside, all in one day. Imagine the stamina it took to do all that within 4 to 6 hours. I did not take lunch breaks and I did not goof around. So the power washer is the big deal, that thing weighed between 125 and 150 lbs. I could pick it up by myself and place it gently in the back of my vehicle. I did this numerous times a day on top of the cleaning. That is no small feat for a woman that stands 5 feet 4 inches and weighed 128 pounds. I had been known to pick up 200 pounds of weight just to see if I could. Needless to say, I was strong, and from what I knew healthy and had the stamina of a gazelle running from a cheetah. Why tell all this, because all this was true BEFORE Aug. 14, 2007. Three short months later in November, the doctors at the hospital had called my family to tell them to come in and say their goodbyes to me, because it didn’t look like I was going to make it. The doctors told my Pastor that they lost me a total of 7 times on the table. SO now, almost 10 years later, I hook up to a machine 5 nights a week for 7.5 hours to clean my blood. I’m stuck on “X” number of medications to keep everything straight in my body. I have to plan every single part of my life to make sure I am not forgetting to order supplies and running out of anything or that whatever I plan isn’t going to keep me out too late to do a treatment. I have all this in my mind when I’m asked, “How is your life? How are you doing?” They don’t want the real answer to that question and if I did try to explain it, the reply is usually, “do you want or need something for anxiety?”. NO, I WANT MY LIFE BACK, I WANT CONGRESS TO GET OFF THEIR REARS AND EXPEDITE RESEARCH INTO A REAL FIX, NOT JUST ANOTHER TREATMENT CALLED TRANSPLANT. Yet, that isn’t what they want to hear either. I won’t even go into the social workers who think they really are helping with their, “well, you have options such as….. have you tried…..” I don’t tell them, nor would I, but please, don’t stand there and act like you have a clue of where I am coming from or what I’ve been through to get where I am at right now. So when I’m sitting here trying to figure out if I risk having a second cup of coffee in the morning or will I gain too much fluid, you have the pleasure of being totally clueless when you ask me about my quality of life.
On a slightly different note, yet same subject for the most part. Most know I’ve gone back to school and am taking courses to become a Health Care Administrator. I believe I have a unique point of view going into that career. I had to do a paper this week on a Risk Management Issue, so I chose Drug Abuse by medical facilities. What should pop up on my initial search? None other than our beloved DaVita Corporation, hmmmm, I grabbed it and dove in. WOW, I was in for more than I realized. I knew DaVita had problems, but I did not know the depth. The research made me want to be a fly on the executive wall in Denver during those private meetings. All evidence points to the fact that DaVita actually pays off or “settles” the accusations with the investigating agencies before any real charges are filed. To the tune of…are you sitting down for this? 1.295 BILLION dollars total is what I found that they have paid out and divided between at least 3 separate cases of either fraud or abuse of drug practices or billing. YET, yet, THIS company has the audacity to tell us that they can’t improve the clinics because it cost too much, tell us it COST TOO MUCH to go full throttle on home treatments? COST TOO MUCH to upgrade all those back breaking chairs to ones that actually have heat so no one feels like they are in a meat locker? CAN’T take the time or effort to actually treat us like humans and not cattle going to market? I’m so angry over this I can’t even form coherent thoughts at this point. So, I guess that is all for today.