Hi, my name is Carol Haydie Ortiz, and I was diagnosed with Lupus 21 years ago. I’ve been in and out of hospitals since I was diagnosed. The first years were the hardest, not being able to get out of bed, move or do anything without feeling severe pain.
In 2007, I volunteered for a Lupus clinical trial at UCLA and met Dr. Jennifer Grossman, who has supported me and helped me understand how to live with Lupus. She is one of the big supporters in the fight against Lupus and I commend her for all the hard work she puts in every day.
In 2009, my condition worsen, Lupus began attacking my kidneys. I had my first surgery to put in a Dialysis Catheter, but it did not work. I had two more surgeries, one to move the catheter to the other side of my abdomen and then finally one to remove it completely because it did not work.
After my 3rd surgery, later to find out I contracted a staph infection from the last surgery, and then came my 4th surgery to scrape out the infection. Since this didn’t work for me, doctors went ahead and put in a temporary catheter on my chest so I can start dialysis.
When I found out I had to go on dialysis I cried, cried, and cried because I always told myself that there was no hope after dialysis. I quickly learned that was not true! I was on dialysis for about 6 months or so. I would get dialysis three times a week for three hours and then go to work right after. At this time I was put on the Kidney Transplant waiting list, I was also able to test my family members to see if anyone was compatible and willing to donate.
On August 4, 2010, my husband, Anthony Ortiz, donated his kidney to me! It was just in time for our 6 year wedding anniversary and it was the best gift ever! It still brings tears to my eyes when I think about it. I hoped that he had given me his softball kidney because I really wanted to play as good as him (LOL).
With the kidney transplant came a lot of extra medications besides my Lupus medication, which help suppress my immune system and in 2011 my hair began to fall out. Doctors think it could be because of the strong medication and because of my Lupus. Since then it hasn’t grown back, but now enjoy wearing my different stylish hair pieces that allow me to wake up in the morning and decide if I want to be a blonde, brunette, have short hair, long hair or none at all.
I have some good days and some bad days, but I wouldn’t be able to get through it all without the help and support of my family, friends, and GOD. They help me get through it all and keep my head up when things get complicated. They are my rock and I love them all very much!!
I WALK, for myself and others who are suffering from Lupus. This life threatening disease has taken a toll on my life and has become a true life changing experience for me and my family.
Lupus is a devastating autoimmune disease that affects an estimated 1.5 million Americans, making the disease more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis. The exact cause of lupus is unknown and there is no known cure.
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100% of your donation will go to support lupus research programs, because the Lupus Research Alliance Board of Directors funds all fundraising and administrative costs.
By supporting me in my fundraising efforts, we are ensuring that the Lupus Research Alliance can continue to advance medical research and help the many people living with this disease.
Carol Haydie Ortiz