God is Mysterious, God is Good Thirteen months ago when doctors diagnosed my perfectly healthy, beautiful 15-year-old daughter, Talia, with a very rare, irreversible kidney disease, they informed me that she would require an emergency kidney transplant; I was in full shock, in bitter, plain denial. Today, looking back, the entire ordeal feels like one big dream. Today, I feel both incredibly relieved & truly blessed by the Grace of God!
Please allow me to tell you our story. All we ask is that you pray for Talia's full & rapid recovery.
In April 2012 my daughter awoke from her sleep several evenings during the middle of the night vomiting from nausea. Upon examination, our family physician, located in Delray Beach, FL found everything to be in order except for an x-ray that revealed Talia's colon to be extremely constipated. This led us to a referral appointment with a gastronitologist. A full & thorough blood panel revealed that Talia's creatine & protein levels were dangerously high. Talia received an immediate police escort down I-95 south and was immediately admitted to the Joe DiMaggio Children's Hospital in Hollywood, Fl.
The next day, Dr. Alex Constantinescu performed an emergency kidney biopsy on our daughter & diagnosed her with: Focal Segmental Glomeruli Sclerosis (FSGS), a very rare chronic kidney disease that effects 2% of the population in the USA. It characterizes itself by an inflammation & scarring of the cleaning filters within both kidneys, thus causing the organs to leak toxic proteins into the bodies' bloodstream. Dr. Alex informed us that Talia's condition was extremely serious & irreversible. He then calculated Talia's overall kidney operating capacity to be only at 18% & recommended an urgent kidney donor transplant. He also went on to advise us that the disease, FSGS, has a 50% chance of returning after transplant surgery & attacking the 'new' kidney. Needless to say, we as loving parents, we were in an overwhelming state of shock & fear.
We decided to not surrender but to fight back! We became the doctors for our daughter & were determined to find a way to regenerate Talia's kidney production & operating capacity; we would attempt anything & everything to make our daughter healthy once again. Our game plan was to boost Talia's immune system to the point whereby her body would be strong enough to combat & overcome this dreadful children's kidney disease. We soon consulted with & explored every alternative/holistic medical option available to us; including Chinese oils, herbal teas & natural supplements; we implemented a strict plant based vegan diet for Talia. No meats & no dairy were permitted, we also incorporated all natural organic vegetable & fruit juicing into her diet. We did have some success. At its lowest point of 8% kidney capacity, we were able to rebuild it to its apex at 22% operating capacity!
However, this success was short lived as the FSGS prevailed. To no avail, we flew to the Boston Children's Hospital for one last hope & a second opinion.
By September 2012, we begrudgingly conceded to western medicine and agreed to peratinealal dialysis portal surgery for our cherished daughter. Unfortunately, a common overnight surgical procedure evolved into a horrific experience when serious complications arose because the surgeon accidentally punctured Talia's intestinal tract during the surgery, causing toxic waste to leak into her body; A painful twelve days later Talia was finally released from the hospital with her dialysis machine in tow. For the next seven months, our home was literally transformed into a hospital 'mash' unit with cardboard boxes stacked everywhere full of dialysis fluids & medical accessories. Every evening Talia faithfully hooked herself up to the dialysis machine for ten hours of treatment.
Never once did she complain, beginning treatment at 8pm and ending at 6am, thus ensuring that she would be ready to attend school the next morning. The doctors were amazed that she possessed the strength & fortitude to continue her academic studies while fighting this awful disease. Some mornings were better than other, as Talia sometimes awakened with various unpleasant symptoms such as dizziness, nausea & migraine headaches: so she occasionally missed school days but never once did my courageous daughter complain.
On May 2, 2013 after having stabilized her illness via dialysis, Talia was officially placed on the National Organ Donor List. We were told that based on her age, her healthy antibodies & blood work, Talia was a favorable candidate & would be placed high atop the national kidney donor list.
Only six days later the Talia's guardian angels shine brightly upon her face.
On Wednesday May 8th, (Feast of Jesus' Ascension into heaven) the long anticipated miraculous phone call arrived. The hospital had found an almost perfect kidney match! We were instructed that we had only five hours to pull Talia out of school & get her to Jackson Memorial Hospital in Miami. We met with the chief surgeon, Dr. Chen, and things were more complicated than we expected. Both Talia's kidneys would be removed since she was blessed with two new donor organs rather than just one; doctors referred to the two gifts as new 'lollipops' and explained that they would continue to grow healthy & strong inside Talia for years to come. I am trying with all my will to keep it together when I look down at my beautiful child & take notice how calm & strong my darling remains. She is actually excited about the surgery saying, "Mommy, I'm getting a New Life"! I have decided to leave the matter in The Lord's hands; I know he's listening to our deepest prayers & intentions. She is prepped & enters into surgery at 7am. Magically, out of thin air, our closest friends & family arrive at the hospital to sit, wait and comfort us during this difficult period.
Good morning, it's Thursday May 9th, Talia's nerve wrenching surgery took about ten hours and currently she is doing well. Her new kidneys are producing urine, her protein blood levels are all dropping within acceptable levels, there is no sign of infection & the nurses are taking blood samples and urine cultures every hour on the hour... No sleep during the first night for the both of us. I have not left her side for a minute. However, we still don't know if the FSGS disease is returning but my instincts and faith are telling me its gone forever! We will be in the ICU ward for the next six days being closely monitored. Talia sleeps a lot and is on heavy pain medication. She eats her first taste of chocolate in one year, a Snickers bar.
Regrettably, Our gift of life was another parent's unfathomable heartache. Wow! My husband & I are totally overwhelmed with gratitude & humbled beyond belief by the news that we have just received; the chief surgeon discreetly divulges to us that a two-year-old baby girl was responsible for donating her kidneys to our precious daughter. We are weeping uncontrollably, tears of joy & pain at the same time. God is mysterious, God is Good!
Wednesday May 15th, Talia is home now but not completely out of the woods yet. She has three catheters inside her attached to a urine bag; she is taking a serious cocktail of anti-rejection & antibiotic drugs and must report to Miami three times a week to give blood specimens.