People often use the word “battle” to describe their experience confronting an illness or a condition. My husband’s and my ordeal figuring out what was steadily sapping his strength for so long was truly a battle in every sense of the word. I had to step up as his advocate, sometimes even against his own wishes, to find him the best doctors and care so he could survive. Strange Symptoms Over the course of several months, my husband, age 70, was growing noticeably weaker. A vital, active man who worked on our farm every day, his lack of energy was unusual. He began taking a nap in the morning, and eventually began to need a nap in the afternoon too. He went to see his primary care doctor, and she prescribed some antibiotics, thinking it might be a mild infection. But these medications proved ineffective, and soon he started to have pain in his joints. His foot was especially painful, and he had trouble walking. Once his symptoms started, he developed a painful, angry-red swelling on the joint of his big toe. His doctors thought he might have gout, so he was prescribed another round of antibiotics. Again, we didn’t see any improvement, and he grew progressively debilitated. At this point I started going to his doctor’s appointments with him. In doing that, I realized he wasn’t being completely honest with his doctors. Always a positive person, he tended to seriously downplay his symptoms and he would agreeably go along with whatever the doctors suggested. When I tried to explain what I saw and knew to be true, he didn’t back me up. I began to insist he be referred to a specialist but the doctors didn’t see the urgency and my husband was reluctant to disagree with his doctors. The doctors ran some more routine blood tests, X-rays and even an MRI, but nothing conclusive or unusual showed up. At my insistence, the doctors eventually referred him to a rheumatologist but the additional blood tests conducted there revealed nothing out of the ordinary. Eventually, one test run by his primary care doctors showed some strange numbers related to his kidneys and we got a referral to a kidney specialist. Each of these referrals took weeks and my husband continued to decline alarmingly as we waited and waited to be seen by the next specialist. In the meantime, I was researching his symptoms online. I was becoming desperate to figure out what was wrong and to get him the help he needed. As a former medical social worker who had worked for hospice for years, I felt he was slowly dying in front of my eyes. I felt his only hope was to see this kidney specialist; it was our only lead. Fighting for Answers When the time finally came to see the kidney specialist at the University of Virginia Medical Center, my husband could barely walk into the building. He couldn’t even bear for me to hold his elbow to steady him and help him along, his joints were so inflamed and painful. I helped him walk by holding him up with my hand on the back of his belt. This specialist looked at his history, ran some more tests, and said there was nothing wrong with “my father” (as she called him). I explained to her that this was my husband, that he had lost over 30 pounds in the last few months, that he had been a strong and vibrant man who had once looked younger than his age, that he was declining rapidly for an unknown reason, and that I was not leaving until he was hospitalized. The doctor said he did not meet the criteria for hospitalization. She had a resident in the room with us and this young doctor took pity on us. He offered to help us get an appointment that day with a hematologist at UVA. I was tearful with gratitude. We waited in the cafeteria until that appointment and then I helped my husband shuffle down the corridors of the medical facility to this new appointment. The hematologist could not find anything amiss. After I told her we weren’t leaving until something was figured out, she finally said she would look for “weird stuff” and she ordered test after test. After the lab drew vials of blood for the testing, we eventually went home. My husband was so weak, he could barely climb into the car. Early the next morning we got a call from the hospital. The results from one of the hematologist’s blood tests revealed a Gram-positive bacterial infection in his blood. It was a highly unusual bacteria—with fewer than a hundred cases documented in medical literature—but those who work closely with animals or raw meat, like veterinarians, farmers, fishmongers or butchers, seem to be at risk. My husband had massive sepsis, a life-threatening response to an infection in which your body attacks its own organs. My husband told me later he thought the morning we went back to the hospital would be the last time he saw our farm. We got to the hospital and a flurry of physicians met us: infectious disease specialists, cardiologists and others. He was there for three days and the doctors found that the bacteria had attached itself to his heart valve as a ball of growing “vegetation.” He was given penicillin to kill the bacteria, but the doctors told me his only way to survive was open heart surgery to remove the growth. He went under the knife early the next morning. The surgery was successful, the growth was removed, and the damaged valve was replaced. Then came a rocky two weeks of slow recovery. The bacteria were still alive in his bloodstream so he stayed on massive amounts of penicillin until his kidneys began to malfunction. He didn’t handle the alternative medication well either. But over time he gained weight, started moving again on his own, and recovered some of his old vitality. After a year and a half, he is back to 90%. He has been working again and has regained a healthy weight. Everyone Needs an Advocate For me, the bottom line in this experience is you need an advocate. I honestly believe, and my husband agrees, he would be dead if he had gone through this illness alone. I think each patient needs an advocate, and that patients need to work with their doctors as a team in researching illnesses and deciphering symptoms. My experience at UVA restored my confidence in the medical field. My husband’s diagnosis was highly unusual, outside the normal scope of ordinary illness encountered in a primary care office. It’s no wonder his primary care doctor didn’t know what was wrong with him. My son, an ENT surgeon living in California, was integral in helping me navigate through this ordeal. He’s astute and caring, and texted me multiple times a day. He was the first to encourage me to get my husband to a specialist, to get him admitted into a university hospital system, and he nailed the sepsis diagnosis before the other providers did. Coincidentally, my son knew the cardiac surgeon who operated on my husband, as he had graduated from UVA medical school, where this surgeon practices. My son reassured me throughout the process that I could trust my husband (his stepfather) to this doctor’s care. I would say to anyone in a scary health situation to never give up in getting answers and finding doctors equipped to find out what’s wrong. I was relentless and my husband is still with me.