My life with kidney disease began back in early 1996. I was 16 at the time, I had left home, and I was living on my own when I fell ill. I had what felt were flu-like symptoms; nausea, weakness, body aches, and during our teen years we all think we are invincible so I went about my daily routine until I realized my symptoms were not going away. In June of 1996 I went to TWO separate medical facilities within days of one another and was sent home from both places. One diagnosed me with the flu, the other a torn stomach muscle. I was prescribed pain medication, told nothing could be done for a torn stomach muscle, and I was sent home. Today this would be grounds for a remarkable lawsuit, but in 1996, medical records were still on paper which means they could be altered without a trace. My discharge papers clearly stated "torn abdominal muscle" and that "no follow-up is necessary" yet by the time my lawyer got all my medical records from the second hospital, that discharge paper no longer stated that. In fact, they had changed my discharge notes to state that I was to follow up within 1-2 days with my family physician, but neither my mother or I was ever told that, nor was it documented on our copy of the discharge paper. Long story short I dropped the case when the fight became my word against the hospital. Unfortunately my mothers boss required proof she was leaving work for an emergency and had thrown away my/our copy of the discharge notes after she had given it to him to authorize her leaving work to sign me out. On July 24th 1996, I went to my family physician who immediately admitted me for observation due to my lab results, and within two days I was diagnosed with Rapidly Progressive Glomerulonephritis. The most infuriating thing to hear was "if they had just caught it a little earlier" they may have been able to save one of my kidneys. But the damage was done, I now had End-Stage Renal Disease, and Stage 5 kidney failure which required immediate treatment or else I would die. Alone, in the room the size of a closet on my 17th birthday I had my first of 1,434 hemodialysis treatments (yes, I've counted). The years that followed now seem to be a blur, a distant bad memory filled with pain, depression, and the desire to give up. There were lots of hospitalizations, surgeries, chemotherapy, plasmapheresis, medications, appointments, treatments, injuries, too many bouts of pneumonia to count, and the myriad of secondary, tertiary, and quaternary conditions that manifested due to the kidney disease. I had to jump through a lot of hoops back then to get on the list, but it finally paid off and after 9 long years of waiting, I got the call. I was 25 at the time of my first transplant, so I rebounded quickly from surgery and hit the ground running! Everything was perfect until September of 2009 when I had a devastating rejection episode that permanently damaged my transplanted kidney causing it's function to drop to 25% where it has steadily declined to the point I am at now, 14% Now I don't expect anyone to understand what it's like to live with one kidney, or much less to live with 14% function of one, but let me tell you, it's a roller coaster (and not the fun, adrenaline-pumping kind). I try to live each day to the fullest knowing that tomorrow or the next may never come. And that my friends is why I've established this page. I am not ready to give up! I have soooooo much more life to live! I do not want to be tethered to machine again, barely existing. I have to be my own advocate, take my life into my own hands and get out there to spread the word about the need for living donors. Right now there are over 100,000 people on the UNOS waitlist all waiting for a kidney, and my story is only one of them. In addition to needing a living donor, I also have to raise $12,548 to cover the 20% coinsurance required by Medicare, and 6 months of my share of cost to Medicaid. So please, if you feel so inclined, and you are in generally good health (no history of cancer, diabetes, uncontrolled blood pressure, family history of kidney or auto-immune disease), please contact Tampa General Hospital at 813-844-5669 and let them know you are interested in being a potential living donor. I need an O+ donor but if you are willing to participate in a "Paired Exchange" or "Donor Chain" then any blood type will be accepted. If you can not donate a kidney, you can still help by clicking here and making a contribution to my HelpHOPELive fundraising campaign. I will not even be placed on the UNOS transplant wait list until I can raise those funds, so EVERYTHING and ANYTHING honestly does help!! Thank you for taking the time to read more about me and my journey! Peace, love, and blessings to you all!
xo xo xo
-Everyone is fighting a battle you know nothing about. Be kind always, no matter.
Hello, and thanks again for visiting my site! Here is what I consider to be a "Cliff's Notes" version of my story just to give you a better idea of where I've come from, and how I got to the point of searching online for a living kidney donor.
Links to my story in the news...
Mel Needs A Kidney