My name is Misty. I am 42, a wife, a mother, and a Gram. I was diagnosed with tuberous sclerosis complex (TSC) in my early teens and was told that I should never have children due to TSC and all the complications that may come with it. I got pregnant at 18 and started having a lot of pain in my flank area. After finding out the tumors were growing rapidly in my kidney, I was told to abort my baby at 5 months and that if I continued with my pregnancy, neither of us would survive. At the young age of 19, I felt a love I never knew existed. I gave birth to my son, “my miracle” who is now 23 and a 2nd Lieutenant in the Army (proud momma here).
3 months after my son was born, I had no other choice but to have my whole kidney removed. In 2005, I went into renal failure. I was transferred to a good hospital with an excellent team of physicians. I went under the knife to have a dialysis port put in my body and came out of surgery with no port! The doctors did an embolization on my kidney, and it began working again.
In 2009, I got pregnant again. Once again, I was high risk and highly advised not to continue with the pregnancy. Due to my history and the condition my kidney was in, we would never make it. My doctor told me if a tumor ruptured, I would only have minutes to make it to a hospital. I was monitored closely and gave birth to my second little miracle, who is now 14 and one of the smartest kids I have ever met.
In 2010, I started having a lot of kidney pain and was told that I needed to have another embolization. With having 2 embolizations in the past, I knew I didn’t have much good kidney tissue left. So, I started doing some online research and came across a doctor in Ohio who was doing a drug study on medicine that could help TSC patients. I met my hero that year, Dr. Bissler.
I was very fortunate to join the double-blinded drug study. I started the medicine in 2011, and in the first few months of being on the medicine, my tumors shrunk significantly.
I can testify that the medicine saved my kidney and my life! I will always and forever be grateful to Dr Bissler for allowing me to be a part of the drug study. I call Afinitor my “miracle drug.”
Jesus is my hope, my salvation and my everything! I had to trust and have faith that He would carry me through this. He did and still is. If it wasn’t for this medication, I wouldn’t be here today to share my story. Dr. Bissler Is my real-life hero who does not wear a cape, but definitely deserves one.
