Alejandra’s Story
My name is Alejandra Watson. I am a mother of three boys with only one child having PKD. We started our journey 17 years ago on November 8th, 2004. A few hours after birth, my son Jonathan was admitted to the NICU due to high levels of bilirubin and the rapid destruction of his red blood cells. A few days later, he received his first exchange transfusion and a month later after a bone marrow aspiration he was diagnosed with PKD in February 2005. The hematologist told me that my son was only going to live for a few more months and I decided to learn more about the disease by looking for people with PKD. I finally found another patient in the Netherlands who later became the voice of my baby and his fierce advocate despite being only 15 years old at the time. Who could’ve guessed that that same teenager I met when Jonathan was a baby was going to be my partner in a much bigger way.
Together, along with another teenager in 2009, the three of us founded a much needed support group on Facebook to help other patients, parents, and immediate family members cope and deal with PKD. Throughout the years, I have learned that most patients with PKD have complex issues, multiple symptoms, and/or variable presentation of the symptoms. In early childhood, Jonathan began to have frequent abdominal pain. The doctors were reluctant to intervene, so I had to argue with the doctors for an ultrasound which showed that Jonathan was having gallstones, biliary slush, and an enlarged spleen. After additional arguing to have a combined spleen/gallbladder removal, Jonathan’s spleen was removed first and 3 months later, the gallbladder. The surgery was complicated and he was in the ICU with lung collapse and an incisional infection.
Over time, we noted many different symptoms that might have been difficult to identify, like the problems with his lungs, oxygen desaturation, hyper/hypoglycemia, congenital heart conditions, and chronic illnesses. Over the course of his life, Jonathan has had to undergo 14 surgical procedures.
He has been able to live a fairly normal life but has experienced many complications and setbacks. Living with PKD can isolate you from the world because the conventional treatments for PKD prevent kids, teenagers, young adults, and adults from living the life they want to, especially if you suffer from a severe form of PKD that requires regular blood transfusions. A lot of kids or teenagers don’t like hanging out with other guys who cannot keep up with them or don’t share the same interests. Jonathan usually shares the same interests as other teenagers, but lacks the physical ability to keep up with them in games or sports.