Posted on January 19th, 2018
My story is one of survival, and I count myself fortunate. My story starts with my mother’s illness, and subsequently with my brother’s. Their stories are not as happy, but provide a necessary backdrop to mine.
In October 2014, my mother was diagnosed with a kidney infection caused by stone that could not be removed due to advanced scoliosis. After having tried to insert stents, the urologist decided that her anatomy made any attempt to remove the stone to dangerous. He decided to insert a nephrostomy tube as a permanent solution for draining her left kidney. In December she was back in the hospital with another UTI. (Sepsis and Kidney Stones, Sepsis and Urinary Tract Infections)
After that stay, she was referred to short-term care to regain her mobility. Things progressed fairly well until May 2015, when she was admitted back in the hospital with full blown sepsis as a result of a UTI. After this course, she was never able to walk or care for herself again. She was placed in a long-term facility where her condition declined over several months. An ambulance EMT noticed her poor condition when he arrived to take her for a wound care appointment. Her blood pressure was 62/39. She was admitted again to the hospital in septic shock with C-Diff. (Sepsis and C. Difficile) Once she was reasonably out of danger, she was placed in a different long care facility, where they would continue to battle with the infection. I remember she was sepsis-free one Friday afternoon, but by Sunday she was back in the hospital. The geriatric specialist talked to Mom, and they decided the best course of treatment was to let nature take its course. My mom was 89.
My brother had a different drama happening about the same time. A diabetic, he had a toe amputation the very day Mom was transitioning to the new nursing home. (Sepsis and Diabetes, Sepsis and Surgery) I was trying to there for both of them, running between two hospitals and answering questions from every imaginable person working with both of them. Fortunately, John’s foot healed remarkably well in the coming weeks, but he did not feel any pain when he broke two bones in his other foot due to compensating. You guessed it–he was admitted to the hospital and diagnosed with sepsis. He was giving himself IV antibiotics at home after he was discharged.
Two days before my mother passed I came down with a severe sore throat and chest congestion. Hospice called me in to stay with Mom; seeking treatment for myself was something I could put off for a few days. The day my mom passed, it went to Urgent Care and explained that I just needed to be up and running to plan the funeral, and then I would be able to rest. The PA prescribed Levaquin, a cough syrup and prednisone. I did get through the next few days, but two weeks later I was back at Urgent Care, where another PA doubled the Levaquin. I got through the Christmas season, including my brother’s family Christmas party. He was up on his feet cooking more food than a platoon could eat, and given his condition, this labor of love was not in his best interest. After Christmas, I went to see my family doctor, as I was still not over this chest cold. He prescribed another round of potent antibiotics, and I did not see him again until early March, when I saw him for major depression. My dear brother had passed the month before, and nothing on Earth could help me reconcile this loss.
We don’t know the cause of death. Apparently he became ill on Sunday, and a friend dropped by on Monday, urging him to go to the ER. My nephew saw him the next day and asked if he could take him. The next afternoon he was dead.
When my husband and I entered his apartment the next day, we were shocked that the air conditioner was on, and the thermostat was set at 55 degrees. We concluded he must have been burning up with fever. In his office we saw spilled iodine and concluded be must have self-medicating another wound. I didn’t even know he was sick.
So in March I saw my doctor again for depression. I still had some issues with breathing, but I chalked them up to spring allergies. I stayed home the next day to wallow in what I felt was well-deserved grief, and then I pulled up my big girl pants and moved on.
The next Monday, however, I would be in the emergency room with a 104 degree fever and, my daughter claims, delirium. I had not noticed it earlier, but I had a red patch on my left calf. I feared a blood clot but scans ruled that out. I was admitted for monitoring and a battery of tests. The night shift RN was concerned that my blood pressure was dropping and called a hospitalist to adjust my medicine. The next day, after CT scans and sinus x-rays, the hospitalist told me I could go home. I remember telling her “I’m not worried about my sinuses. I’m worried about this red patch that is creeping up my leg!” A new set of tests were performed, and it was decided I had cellulitis. Blood cultures confirmed sepsis. I was off work the remainder of the school year, trying to regain my strength. (Sepsis and Cellulitis)
It has been almost two years since my diagnosis. I have experienced many different issues since then. I was diagnosed with indolent lymphoma, which preys on my mind, but nothing scares me as badly as the possibility of getting sepsis again. I have had surgeries and skin infections that have been hard to heal. I have been lethargic and had trouble breathing. I gained 40 pounds in the six months following the diagnosis. I have had unbearable pain in my shoulders and arms that made it impossible for me to lay in bed. I suffer from exhaustion that makes me sleep for about 36 of 48 hours. I quit my wonderful job as a school librarian because I could not keep up with the work.
Mostly, though, I suffer from fear and maybe survivor’s guilt. I know I am lucky to have walked away from this and am finally getting some energy back. My brother and my mother did not get this gift. I am determined now to make as many people as possible aware of what sepsis can do to a body. I am going to tell them they will get better if they give themselves time to heal and to tell them to watch over their loved ones, for fear of sepsis being overlooked.