by admin | May 1, 2018 | ADPKD, Advocacy
We reached out to Honorable Karen Thurman, a former member of the U. S. House of Representatives, to hear her journey on dealing with PKD in her family. Karen also shares her thoughts on the news of the first ADPKD treatment and how tolvaptan will impact the PKD...
by admin | Apr 19, 2018 | PKD Will Not Beat Me
“I’d like to talk to you in person next month about a transplant.” I heard these words from my primary sclerosing cholangitis (PSC) specialist over the phone in December when I was hospitalized for the fourth time with sepsis. The doctor’s appointment was surreal...
by admin | Apr 12, 2018 | PKD Will Not Beat Me
“It is going to be intense.” This is how my doctor described going through the liver transplant evaluation process. I had no idea what I was getting into because I didn’t have to go through this when I received my kidney over 15 years ago due to PKD. I was too sick...
by admin | Mar 22, 2018 | PKD Will Not Beat Me
Being a patient takes work and dedication. Depending on our health status, it can feel like a part-time to full-time job. It is a constant learning process and important to find a balance between our health challenges and everything else in life. We don’t want to get...
by admin | Mar 15, 2018 | PKD Will Not Beat Me
When we endure health issues, we deal not only with our emotions, but also those of others. My immediate circle of support, who are most impacted by my health, are my husband, Noah, and my parents. All three of them are very dedicated caregivers. They love me...
