Further Down The Spiral

Unfortunately getting listed at University of Michigan was a no-go. Because I live in Florida and my only secondary insurance is my share of cost Medicaid (which is barely insurance since it pays for NOTHING until I spend $1314 in a month on medical bills myself) I cannot be accepted into their transplant program. We even spent hours on the phone with a couple insurance companies who all declined to cover me because of my end-stage renal disease being an exclusion for coverage on their policies. So I am back to waiting on Tampa. And as far as Tampa goes my case was SUPPOSED to have gone before the medical board on May 18th according to my coordinator but for some reason it didn't. And it won't go this week because "someone called in" and she (my coordinator) has to fill in for her instead of taking cases to the board. This is our medical system at work. If someone calls in, lives are put on hold so that someone else can make up for the work not being done by the person who failed to show up. I am sorry if I do not find that to be an acceptable excuse as to why I have been waiting a year to get to the point where my case could go to the board and now I am being delayed by at least two more weeks because of an employee calling in??? How is this even possible?? An average of 22 people die each day while waiting on the list for a life-saving organ transplant and these people who are supposed to be medical professionals are treating it as if we are waiting for our order at a deli counter! I AM NOT A NUMBER!!! I AM A HUMAN BEING WHO WANTS TO LIVE!!! 

I cannot explain to you how hopeless some of these conversations and interactions with these people can make you feel. There is no compassion, no feelings of remorse when they are telling you that once again you have to wait to be approved by a board to get onto a list only to wait some more. I know that it doesn't only make sense to me that everyone should be listed and if an organ comes up for you that you aren't prepared to receive by their standards, you get skipped and it goes to the next person. That to me seems like a more fair and ethical way to do it rather than hold people off the list until they get so sick that transplanting them would either do no good or it is no longer an option. So as frustrating as it is...all I can do is keep fundraising, praying, and waiting. Thank you all for being so patient and understanding and kind while I am silently over here losing my mind. The stress and frustration with having to deal with all of this alone has been taking a huge toll on me both physically and emotionally. I am not ashamed to admit that I have been dealing with some depression lately and I have lost interest in many of the things that used to bring me joy all because I am struggling to understand what part this all plays in God's plan for me. I know that I am not a bad person but sometimes it is hard for me to see just what kind of future I can even hope to have when the life that I saw for myself slips further and further away each day. It's an awful feeling when your body just doesn't work the way you want or need it to. I want to workout and be able to chug a bottle or two of water but I can't because my body will not eliminate it and I will wind up short of breath and all swollen from drinking that much when my kidney can't get rid of it. I want to have the energy to run, and work, and manage my daily life without feeling like I can't make it through the activity or I need to take a nap immediately after but because the kidneys produce red blood cells and mine aren't doing their job, anemia (low red blood cell counts) controls much of my life. Some days it's hard to get out of bed, and some days I have a burst of energy so I take advantage of it and then I'm usually paying for it the next day. I wouldn't wish this condition on my worst enemy because it truly is a lifelong struggle. So please everyone let this be a warning...LOVE AND APPRECIATE YOUR KIDNEYS!!! Have them checked regularly, keep an eye on your blood pressure, manage your diabetes (if you have it), be wary of urinary tract infections (that was what caused my condition), if you are prescribed antibiotics ALWAYS take the entire course of them, and stay away from medications that are known for causing kidney damage. I guess that is all I have for you now, thanks for reading and for your continued prayers and support. I can really use them. Also please feel free to stop by my HelpHOPELive page by clicking HERE where you can leave some uplifting well wishes by signing my guestbook, look through some pictures from volunteer events I've participated in, and share my page to multiple media outlets to help spread the word about my story and my search for a living donor. In addition click HERE to visit my website for information on organ donation, paired exchange donations, information for patients and caregivers, and to read about my patient of the month.

Love & Blessings,
Mel