On August 4th of 2021, just two days before her 22nd birthday, our sister Zaniyah was admitted to the hospital with Covid, Pneumonia and a Collapsed lung. Since then, she has spent on average a week per month in the hospital getting her lungs drained of blood and fluids with a chest tube. Each time that she went into the hospital month after month, she happened to be on her menstrual cycle. This strange occurrence finally caused one doctor to suspect that it was her period that was causing her collapsed lungs month after month and sought out the help of both the Mayo clinic in Jacksonville Florida and UF in Gainsville Florida, but they both turned her down. Our mom took matters into her own hands after our sister was given a second chest tube while already having one in her chest and started researching doctors who specialized in her specific condition. One Monday morning conversation with an office manager of a cardiothoracic surgeon would result in my mom taking our sister from the Florida hospital to Atlanta with both chest tubes in her chest by car to get her to the surgeon the next morning. The empathy and care that our sister finally received was overwhelming as we finally found a doctor who took her symptoms serious and who cared after months of feeling lost, sad and defeated watching her go through the pain.
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She was diagnosed with a rare condition called Catamenial pneumothorax and stage 4 endometriosis, and was immediately scheduled for surgery that week which removed most of the endometrial tissue from her lung and diaphragm, and then they stapled her abdomen to try to avoid further complications. She was put on medication to stop her cycles in order to allow her body to heal until her next surgery could be scheduled, but it did not work. Since that surgery, she's continued to experience collapsed lungs and multiple chest tubes. She's currently had her 10th drainage today because her left lung collapsed and filled with blood and fluid after her right was repaired with a pleurodesis twice. The medication that was prescribed to her to stop this from happening was quoted at $5,000 out of pocket so our family could not afford to buy it for her.
Because of her current state, Zaniyah’s surgery was scheduled today to happen on Tuesday, May 31st by the doctors who have been very instrumental in getting her treated at little to no cost to our family with respect to her meds and out of pocket costs that our mom & her dad has to pay for her. Our mom received the out of pocket cost summery for the gynecologist, but we aren't sure of the cost of the colorectal surgeon as yet which could come later. This surgeon will be present during her surgery due to her needing a resectioning of her colon due to the damage that her stage 4 endometriosis has caused in her organs. She will still have to have another lung surgery on her left lung shortly after to remove more endometriosis tissue from there as well and more than likely another pleurodisis will be done on her left lung as he did in the right.
Our time maybe short for this goal, but we know that with everyone’s help we can get our sister back whole again. We pray you find it in your hearts to help us reach the goal of $3500 as we were told the cost would range from 1500 to 3500 and we want to make sure that we have enough to cover her surgeries, medications and other continuous medical costs. To know niyah, is to love her and although she's been going through the toughest battle of her life this past year, she still wears a smile to make sure that we don't worry about her as her little sisters.
Thank you for taking the time to read our story about our big sister and thank you for finding it in your heart to help us during this difficult time.
(photo taken 5/27/22)
