(Healthy and Happy)
(Having fun while covering the wedding showcase for work)
It has been over a year since my snowboarding accident that led me into a more cautious and close evaluation of my genetic disease, Tuberous Sclerosis. I was born with this disease, as previously mentioned in my blog posts. The disease, which presents benign tumors in multiple organs of my body, was the reason for seizures I endured as a baby. After my parents administered shots similar to a steroid by doctor's orders the seizures ceased. This disease is rare with a one in 6,000 people effected. Not many doctors know about it and are learning just as the patients are. Some doctors specialize in the condition but can only be found in some areas within the U.S. A tumor at the base of my brain was the point of origin of such seizures. Throughout my adolescence I had MRIs on my brain, check ups on my eyes, and kidneys — the organs where the tumors are present. I also have them in my skin. They look like skin tags.
Despite all this, I have lived a normal life —graduated high school and college, served an LDS mission, and am now living my dream as a journalist at the St. George News. One of my six brothers also has the condition, but has endured different things in association with it. The tumors in his brain are in the reasoning portion. He has struggled with understanding and learning certain things, but if you know Ashley, he is an amazing man, who is smart, dedicated, and hard working.
This disease affects each diagnosed person differently, as you have read. Even as the patient moved through adolescence into adulthood, it is really unknown what changes might happen. With the conclusion of MRIs throughout my and Ashley's adolescence we have been told there has been no change and unless any serious symptoms, such as severe headaches or seizures, are present there is no need for further evaluation. However, doctors have encouraged to have evaluation on the kidneys through ultrasounds and MRIs. I had not had an MRI on my kidneys since 2009, because doctors had said there was no change and I was healthy and having no struggles. That changed on Nov. 19, 2013.
In summary, on that day I was snowboarding on my day off at Brian Head Resort where I was also working at the time. I was speeding down an easy "green" slope when I caught an edge on my snowboard. The impact led to a burst of a 7-centimeter tumor within my right kidney and a cracked rib on my left side caused bruising to my left lung. I was able to drive to Minersville, but at that point I had lost so much blood I passed out and was transported to Beaver Hospital. A full body scan confirmed the bruised lung and the lacerated kidney. I was transported to Salt Lake City to the Shock-Trauma unit for about a week. The body scan also confirmed that the tumor which had caused me seizures as a baby was still in place at the base of my brain. It sits in a puddle of calcium that has left it inactive. To me that is a miracle. The scan also showed that tumors have become present in the liver now, but my recovery from my accident has been a miracle. After a blood transfusion, continuous iron supplement intake, and a month being on oxygen I was making it back to normal.
Throughout the past year I have undergone evaluation of the kidney with MRIs and ultrasounds. I was also prescribed the pill Afinitor, which was developed about six years ago as a way to help patients with a kidney condition. It is not a cure to my condition but has been tested to shrink the tumors in all organs where they are present in patients with Tuberous Sclerosis. The pill without insurance and help from the pharmaceutical company can cost as much as $10,000 per month. I am grateful that it only costs me $12.50 per month with the help of a co-pay card. The evaluation of the kidneys and my recovery has shown that my function is improving and I am doing well.
Also throughout the year my faith in my Heavenly Father and my religion has grown. I had not been making the best choices in my life. The accident was a blessing and a wake up call. I am grateful for the trials and the blessings that have been present in my life. I know that as we trust in Him (Isaiah 55:8-9, Proverbs 3:5-6) and keep his commandments the best we can he will take care of us. I have been blessed with such great job, which I can work to my full capacity. I have gotten in the best shape of my life with working out with Operation Tonergy (now known as Rogue Training) in Cedar City.
(After a city council meeting. This was me when I had gotten in the best shape of my life from Tonergy Personal and Group Training)
Today, I had a follow-up check-up with my nephrologist and he was happy to see my health improving. So grateful. So blessed and I also thank ALL OF YOU for your love and for being in my life!
