It has been difficult motivating myself to create this web page. It is not in my nature to ask for help. However, a little time, a little soul searching, and a lot of advice from a lot of wonderful people have convinced me to open myself up to the love and support of the many friends and loved ones who want to give it. So here is the story ...
My name is Carlos Capote. I am 36 years old and husband to a beautiful wife, Terri, and father to two little girls, Josie (4) and Carmen (9 months). I grew up in West Palm Beach FL and moved to Atlanta in 1990 to attend GA Tech. My love of music, particularly blues, goes back to my youth, but while in college I took that passion to the next level by teaching myself to play harmonica. I graduated in 1996 and immediately started working as a mechanical engineer. At the same time, I began playing music around Atlanta and the southeast on weekends and in 1997 started my own blues band, The Breeze Kings ( www.breezekings.com ). In 1999 I met my future wife Terri and in 2001 we got married. As the years went by, the band got busier and the emotional draw of music as a professional career option grew stronger, but I was never brave enough to make the leap. In 2003, it was made for me. I was laid off from my engineering job and my wonderful and supportive wife gave me the green light to go for it. Despite the significant drop in income and some of the luxuries it may have afforded us, we have never looked back or regretted that decision. Working at night has allowed me to take a very active role in raising our girls and given me a lot more "quality time" than many fathers get. Music has also given us a lot of things that money can't buy, among them a great group of friends and a lot of unique stories!!
Way back when I was in the 8th grade and had just won a spot on the middle school baseball team, a routine physical alerted my family to the presence of excessive protein in my urine. A lot of tests were run and no issues were found. I led a very active and healthy life, but the issue never went away and remained an ominous sign of possible future kidney problems. In 2003 it came up again during a physical and more tests were run. This time, it was discovered that my kidney function had decreased to about 60%. This is well more than enough to live, but a clear sign the disease had very slowly progressed over the last 25 years. In June 2008 I began to feel a lot of fatigue and muscle pain and got checked out again. The damage had sped up and I was now below 15% kidney function. My doctor informed me that immediate dialysis and eventual transplantation would be my best course of action. From there, things really took off. I immediately had surgery to install dialysis access in both my abdomen and my upper arm. I began following a highly restricted kidney diet and training in home dialysis methods. In November 2008 I began performing peritoneal dialysis (PD) in my home 2-3 times per day every day while still continuing to perform music and, along with my wife, raise our two young girls. The time burden and life disruption of daily dialysis is a very difficult, yet unavoidable, adjustment, but the flexibility of PD, self care in the home, makes it a bit more tolerable.
In August 2008 I went to Piedmont Hospital in Atlanta for a transplant evaluation. After a long day with many tests and consultations, it was concluded that I would be an excellent candidate for successful kidney transplant. I was given the following two main objectives in order to be added to the transplant wait list: - Lose 22 more pounds ( I had already lost 30 since the original diagnosis) - Establish a special medical savings account and set aside at least $10,000 to help cover the extensive costs of post transplant medication.
These objectives are mandatory before I can be placed on the transplant recipient waiting list and before they will begin testing possible donors. The financial aspect may surprise some people, but it is a necessary preparation. Sadly, even with insurance, transplantation is really expensive - enough to put it out of reach for many people. The transplant committees must therefore consider a patient's ability to pay not only for the surgery but also the years of post surgery costs before they can approve them to receive a donated organ - an obviously precious gift available in very limited numbers.
SO HERE WE ARE
The Piedmont Hospital Transplant Committee recommended I utilize a savings program by the Georgia Transplant Foundation (GTF). The GTF program offers a matched funds savings account where any funds deposited in the first year (up to $10,000) are matched dollar for dollar by the foundation's own internal fundraising campaigns. Not every state has programs like this, so once again, I feel lucky. The one year deadline for match eligible contributions in my account is October 31, 2009
You can make a secure credit card donation from this page or send it in by mail (additional donation info at bottom). Also, please check back for news of fundraising events. My many generous friends in the Atlanta music community are already mobilizing to put together some great concerts on my behalf. There is a basic event calendar below with event details at the top right of this page.
UPCOMING EVENTS for full details, click on each event in the right sidebar of this page
Saturday May 23, Hill Country Holler Festival, Newnan GA Thursday June 4, Kids for Carlos concert, Maddy's BBQ, Decatur GA Sunday June 28, Blind Willies All Star Blues Benefit for Carlos, Blind Willies, Atlanta GA
UPDATES AND ADDITIONAL INFO:
- 5/7/09 Believe me when I tell you my phone and email has been ringing off the hook with calls from friends. Everyone, and I mean everyone, has reached out to us and that alone has been very uplifting. If I haven't returned a call or email, please accept my apologies. It is a lot to keep up with. I also want everyone to know that despite the obvious seriousness of my diagnosis, I am doing very well and still going about my regular routine - booking and babysitting by day and playing blues at night. Besides being a bit tired all the time ( I nap a lot ), I am otherwise healthy and responding well to my daily dialysis. Hopefully when you see me out and about the only difference you will notice is that I am drinking water (trying to lose a few pounds) and I may yawn from time to time. Please don't worry about me. My mom worries enough for all of us!!!
- Several people have asked for a bit more info and I don't mind sharing details. My official diagnosis is called Focal Segmental Glomerulosclerosis (FSGS). This is a genetic condition that is more common in minorities. There is a reasonable explanation HERE. This genetic condition was basically discovered in me when I was very young and has progressed slowly to the point where I am now. For whatever it's worth, it is not the result of any bad habits like drugs, cigarettes, alcohol, etc. I don't like to judge other people's lifestyles, to each his own, but I don't mind telling you that mine is pretty clean. Anybody who knows me probably already knows this, but I thought I would clarify.
- Nobody has asked, but I thought I should add that I will not, at any time now or in the future, have personal access to these donated funds. After my surgery, the GA Transplant Foundation works with the pharmacy and the insurance company and makes arrangements to pay prescription costs directly, thereby insuring that donated funds are used as intended. For more info about GTF in general, click the very top right logo on this page.
- If you are uncomfortable using your credit card on the internet, check donations can be made out to 'Georgia Transplant Foundation" and mailed to 6600 Peachtree Dunwoody Road 600 Embassy Row, Suite 250 Atlanta, GA 30328 Very important - Please make sure to write "For benefit of Carlos Capote' in the memo section!
WARNING: Due to an apparent web site glitch, some people's credit cards are being charged twice. It has only happened a couple times, but I don't want it to happen any more. Please be sure to only click 'SUBMIT' once. If, at any time, you are taken to a 'Login Screen', ignore it. You do not need a username or password to donate.
It is beyond my ability to put into words the gratitude I have to everyone who has already helped me, and that list keeps growing, and along with it my love for all of you.
Thank you, Carlos