In a split second our world and our health can change dramatically. We can go from being healthy to severely ill, thinking we are fine while relaxing on the couch and then spiking a fever and dry-heaving while calling 911. This happened to me at the beginning of May, two days after I paid my respects to my grandmother in my birthplace of York, Penn.
Shortly after arriving at the hospital and being evaluated in the emergency room, I was admitted to York Hospital and spent 10 exhausting, concerning and stressful days in a hospital room 2,692 miles from home. It was quickly determined that I had sepsis, a potentially life-threatening blood poisoning from infection. I’ve had sepsis several times over the past couple years for varying reasons. When I was septic six months ago, they discovered that the bacteria in my bloodstream was klebsiella pneumonia and this time it was that same bacteria again. This was very concerning and the doctors did many tests and scans to try and find the cause. However, no answers were revealed.
It was an emotional rollercoaster while I was in the hospital. The first night I was there, I had the worst rigors to date. Rigors are a symptom of sepsis, along with low blood pressure and high heart rate, which I had as well. I woke up at 2 a.m. unable to catch my breath and with all over convulsions. I could not get my body to stop shaking for over half an hour. I haven’t been that scared in a long time. My nurse said that she has never seen rigors that bad. She was so kind and comforting and sat with me for a long time until I was able to relax.
On top of everything else, I had the stress of being across the country from home and my husband and the worry of what I was putting my parents through. Then there was the concern of all of the tests and what the outcomes would be. Also, I was stressed about having to make big decisions, like whether to take an oral antibiotic when I was released from the hospital or stay in Pennsylvania over a week longer to get daily IV antibiotic infusions. An extension of this decision was to determine whether to get a PICC line, which doctors were against for fear of infection, or try to keep a peripheral IV working for a week so I could get the antibiotics intravenously. Throughout my stay, I was reaching out to my transplant team at Johns Hopkins and my doctors in California to keep everyone in the loop and make sure all of the doctors were communicating and making the best decisions for my health. Through it all, I was trying to rest, stay mentally grounded and positive.
During this recent health hiccup, I thought a lot about my grandmother passing and the PKD community. I understand that at 93-years-old, my grandma was tired and it was too much of a fight, physically and mentally, to recover from her fall. I also pondered how stressful and challenging our PKD journeys can be and how important it is that we focus on having a strong will to survive. It may seem easier at times for us to lay back in our hospital bed and let our resolve to fight diminish, especially when fighting negativity and our health problems makes it double the battle. It is incredibly important, however, for us to approach things one health issue and one day at a time. We must trust in the power of positivity, love, support, our will to fight, and our will to survive.
From the moment my mom dialed 911 on May 9, my trip home to support my family turned into a trip of my parents supporting me. My planned stay more than doubled in length until I was healthy enough to return home to California. Keep an eye out for my next post to learn about my treatment post-hospital stay in PA and how I am doing today.
In the meantime, what helps to keep you fighting and maintain a strong will to survive?