Jana's Story

Jana Rugh, an OHSU patient.

As an adult, I was diagnosed with a genetic heart rhythm issue, Long QT syndrome, and doctors immediately placed an implantable cardioverter defibrillator (ICD). Within days I needed emergency surgery for a puncture in my heart muscle. 

Up until that point I had been living an extremely healthy life, teaching yoga and eating a healthy diet. However, from that point on I felt my health spiraled out of control. Two more times doctors tried to replace the leads (wires that connect to my heart) of my ICD and I continued to have reoccurring punctures that caused pericardial effusion, when fluid accumulates around the heart. I was in constant pain, could not exercise and could barely move without pain. I grappled physically with chronic pain, emotionally with losing my way of life, and financially struggled as the cost of my many hospitalizations piled up. I had had four surgeries within five years. 

I felt strongly that having the ICD wasn't worth losing my quality of life, no matter the risk. I wanted to have the ICD removed once and for all, but I knew that it was a complicated process. I did some research and found Dr. Charles Henrikson was a top lead extraction doctor, and so I sought him out. 

Dr. Henrikson listened carefully to my story and then spent a year closely monitoring my health and pain in order to consider removal of my ICD. The team at OHSU reviewed my original genetic testing and compared it to current research on my condition. They also reviewed my device data from the past several years to ensure there were no dangerous arrhythmias. I felt they were doing everything they could to uncover a possible path toward removing my ICD. 

The next time I was hospitalized because of the leads, I immediately followed up with the Arrhythmia Clinic and asked for help. I wasn't going to waste another minute. 

I was quickly scheduled to meet with Dr. Babak Nazer who led the conversation between Dr. Henrikson and nursing staff to come up with a game plan for my ICD removal. After reviewing all of the information on my health, device and genetics, they showed the data supported removing the ICD. I felt like I had the "A team" and that they were really invested in not just getting me well, but getting me back to the life I was missing. 

Dr. Henrikson led the complicated extraction and within six months, my health greatly improved. 

One year later I have reclaimed my life. I have ZERO pain. I didn't even realize how much pain I was in until I didn't have any. I didn't think I would ever get my old life back, but I'm stronger and healthier than I was a decade ago.  

I know ICD removal is not for everyone, but for me the quality of life I have at 50 years old is worth it all. I know I would have not have lived a full life if I remained on the ICD. The doctors at OHSU understood that in my case it was not just about saving a life, but quality of life and for me that is priceless.