VF in the News

Marcela’s Story

Although cyclophosphamide and prednisone saved her life, it was too late to save the vision in her left eye and her right eye was in a delicate condition. Unfortunately, by 1999 Marcela had developed cataracts which made it difficult for her to see. In spite of this, Marcela continued to work as a Human Resources Manager in one of the largest insurance groups in Columbia. Amazingly, only a few of her co-workers knew of her condition. A determined woman, Marcela asked a few colleagues to read her work documents and to help her dictate replies. She also identified people on the basis of their voice. While Marcela was overcoming obstacles at work, she was bothered by the weight gain from the medications which later led to plastic surgery and a hormone diet. In April of 2000, Marcela had cataract surgery which helped her to recover sight although she still lived under constant threat of eye perforation due to the lack of sclera. At that time, she and her husband made a pact to travel to see the world.

With the constant worry of eye perforation due to the lack of sclera, Marcela consulted specialist in the United States about the possibility of an eye patch. At that time, the outlook for this surgery did not look promising, so Marcela returned to living life as fully as she could. In fact, during the next two years, life was happy and normal until one day Marcela began screaming while watching television. A micro perforation of the conjunctiva had occurred. She was rushed to a special eye clinic in Bogota where she had an emergence sclera patch. Fortunately, the surgery worked and her eye was finally protected again after three long years.

The next two years were the happiest years in the midst of Wegener’s. Marcela was in remission allowing time for travel to the Middle East and the South of France. Later she along with friends traveled to California, Nevada and Arizona. It was on her vacation to the US that Marcela began to look tired. Although the doctors in Bogota found nothing alarming, Marcela continued to decline. She began to have trouble breathing, paleness in her face and overall pain. The Wegener’s had returned and there was bleeding into her lungs and kidneys. She was in intensive care with a poor outlook when a consultant recommended adding plasmapheresis to the prednisone and cyclophosomide. Her lungs responded, but her kidneys were failing requiring dialysis.

Marcela refused to let her illness deter her life. She returned to work a week later even though she had lost her voice as a consequence of the tubing. She used a whistle to gain the attention of employees, wrote instructions on a blackboard and a laptop that had a revolving screen. Her strong will to live overcame adversity once again.

In 2010, she made another trip to Europe coordinating dialysis in several cities. Shortly thereafter, Marcela decided to have a kidney transplant. On October 31, Marcela had a transplant. Things took a turn for the worse. Marcela had profuse bleeding and an infection. The profuse bleeding required another surgery. Although Marcela pulled through, the infection remained. On December 7th, Marcela underwent another surgery to take the kidney out. This time, Marcela did not pull through and on December 8th she left this world.

Marcela was a strong, smart and determined woman who lived each and every day to the best. She loved deeply and will always be remembered for her warmth and courage.

Published: May 2011

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