Clarence Moses

 

It has been two years since my husband passed away. Clarence’s death certificate reads multi-organ failure, but I know the true cause of his death was sepsis. One resounding theme I have noticed from testimonies given here, is medical professionals failure to recognize symptoms of sepsis and treat it accordingly. For those who have gone through this terrible illness, and the frustration of misdiagnosis, or early release from hospitals, my heart goes out to you. This is the case for my family, in the loss of my husband, a father, grandfather and former career lifeguard who saved thousands of lives, and needlessly suffered at the end of his.

I am thankful for this website, and the information, knowledge and awareness that it offers.

My husband had an aortic valve replacement in 2005. He also had an autoimmune kidney disease that was responding well to medication. After his heart surgery, he developed diabetes type two. He had sleep apnea. He was being treated for his issues. (Sepsis and Impaired Immune System, Sepsis and Diabetes)

In 2013, he started getting night sweats, so bad that he would soak the sheets. Cognizant of his health, he went to the doctors several times, who told him that night sweats could be a symptom of anything, and sent him on his way. Then he became short of breath, low on energy and lost 30 pounds, this all occurred within three months. Through this period, he was seeking help from his PCP, but was not diagnosed. He went to his cardiologist who did not note the symptoms of endocarditis. Night sweats, shortness of breath, low energy and weight loss. To this day, I feel my husband slipped through the cracks.

The day after my husband saw his cardiologist, he didn’t come home at the usual time. I received “that” phone call that loved ones dread, from an officer inquiring how I knew him, he explained that my husband had stopped his truck in the middle of the road and seemed confused and was argumentative. I pleaded with the officer to call an ambulance, thinking that maybe he had low blood sugar. After retrieving the truck and meeting my husband at the ER, he had extremely low blood pressure and a 104 fever. Incredibly, he was awake and a bit loopy. The hospital began sepsis protocol that saved his life. He was in ICU for a time, responded well to antibiotics. They did a procedure checking for endocarditis, and did not note any vegetation on the heart valve. The doctors said that they were treating his illness as a heart infection anyway, because all of the symptoms were there. He was sent home after a two week stay in the hospital, on a six week regimen of vancomycin.

Almost a year after the date that my husband first had sepsis, he was feeling ill again, had a high fever and just wasn’t himself. We went to the ER, and found he had sepsis again. This time, the tests came back that pinpointed the infection to a dental procedure. (Sepsis and Dental Health) He responded well to the antibiotics and again after two weeks in the hospital was sent home with a six-week regimen of intravenous antibiotics.
Looking back, I realize now that the two bouts of sepsis changed my husband’s health drastically. He lacked energy, his personality changed, he was depressed and grouchy. He had aches and pains in his joints. His diabetes was harder to control. His PCP did not recognize this as post-sepsis syndrome. After reading on this website, I now understand the issues my husband dealt with. 2015 spared us from another bout with sepsis, but Clarence was not himself, I noticed that he was rapidly aging, suffering from severe joint pain and personality changes.

2016, my husband came home early from work, thinking he had the flu. I was alarmed at his color and wanted to take him to the ER. He said he just wanted to rest. His temp was high, 103 but dropped to 101 after taking Tylenol. I had an appointment, which he insisted I go to, reluctantly, I did. Upon coming home, I saw that he was still feeling ill and was nauseous, he agreed to go to the ER. I explained to the registering nurse that he had had two bouts with endocarditis and sepsis. We sat in the waiting room for 30 minutes. It seemed like a lifetime. Finally, we were ushered into a room. They started hooking my husband up to IVs, taking blood draws, and giving vanco. My husband pointed to an area on his head that he said was sore. I looked and noticed a quarter sized spot of blackened skin and told the doctors that it was something new, as I cut his hair a few days prior and it wasn’t there. He was admitted to the telemetry ward, and went through a series of antibiotics. He had the runs, was pale and weak and his legs were swelling. This time was different. He was not responding to the antibiotics. He had IVs in both arms. They had him in a shared room with another patient, then moved him to a private room, because they were unable to detect the source of his infection. They said it was MRSA, then said it was not. He was running fevers the whole time and seemed more confused and exhausted. They tried 5 different antibiotics and said they would not release him until he was 72 hours fever-free. I was working and going to school during this time and my daughters and I were taking turns visiting him. We became alarmed at his “care”, as we would find him with stains on his clothes from the runs, as well as stains on the sheet and bed. At our insistence, they finally got him a commode, as I explained that it was difficult for him in his condition, with IVs in both arms, lugging the machine around to make it to the bathroom in time. I had to point out the lesion on his head to the hospitalist and asked about getting it biopsied. After five days, they finally had a dermatologist come and look at it. He removed the lesion, without shaving the area. When I visited my husband, I was shocked to see the wound, open and matted with his hair. I called the nurse and she said the doctor left no orders for wound care. I cleaned out his wound, shaved the area around it and requested neosporin. To this day, I feel badly that I was not more assertive about this lack of care for my husband. I urge anybody who has a loved one in the hospital to have someone there 24/7, to advocate for them. Hospitals are overcrowded, understaffed and nurses have way too many patients.
The scalp biopsy came back positive for staph.

My husband was still running low grade fevers, had extremely swollen legs and hands, was pale and exhausted. He was in the hospital for about two weeks when I got the call at work that they were going to release him. He was still feverish, swollen and ill. He also had the chills and rigors. I asked the doctor why he was releasing him when he was still running fevers to which he responded that he was “no longer septic.”

My husband just wanted out of the hospital. His legs were so swollen, he could barely walk. They released him with yet another, different antibiotic, daptomycin, which I later found out is extremely hard on the kidneys. We had an intake at home with a nurse for the home meds service and she remarked with concern at my husbands pallor, his low-grade fever, chills and increasing shortness of breath. We had to go to get a blood test, and he could barely make the short walk to the lab. The nurse said that we should see his cardiologist. We went and the cardiologist said my husband was strong, and it was probably the extra fluid retention that was making him feel so ill. I wanted him to go back to the hospital, because he was so ill, but the doctor just prescribed him medicine to eliminate fluids and sent us back home. My husband became more agitated, could not sleep in a prone position and had extreme chills. He woke the next morning with an excruciating headache, I called the doctor who just said to give him Tylenol. By that evening, my husband couldn’t breathe and his fever shot up to 103.

We called an ambulance. He was rushed back to the ER. I found out by overhearing the doctors that he had bilateral pulmonary edema. They gave him oxygen. The lead ER doctor came in and told me my husband would be admitted to ICU. They ended up putting him back in the telemetry ward. Things continued to go downhill from there. My husband was delirious at times, but was able to answer the routine questions of name, date and year. They restricted liquids, due to the water retention, he had gained 30 pounds. He was still short of breath. I asked why he wasn’t in ICU. No response. The nurses seemed more concerned with entering info into the computer. At one point, a nurse asked me if I thought my husband was agitated. I looked at her incredulously and told her that he had a hard time breathing and was in pain, who wouldn’t be agitated? She remarked that his oxygen stats looked fine, but I later learned that finger pulse oximeters can give false readings if extremities lack blood flow and are cold, and a good reading does not indicate whether a person is in respiratory failure. I pleaded with nurses to just look at him, not the readings. He was not getting any better, and was showing signs of kidney failure, couldn’t get in a position of comfort and at times was in agony. Still, no ICU. No explanation from doctors as to what was happening. That evening, after going home to shower, I came into my husbands room to find a team of doctors checking his heart. They said he had had an “incident”, wasn’t breathing well, and they were going to intubate him and put him in ICU. FINALLY. Something. At the same time they performed another test to see if there was heart infection.

The next day, the doctors explained to me that my husband was gravely ill, but still strong, they wanted to put him on a slow 24-hour dialysis for his kidneys, but he would need open heart surgery because his aortic and mitral valve were infected. I explained that my husband wouldn’t want to undergo surgery if it would leave him debilitated. I wondered to myself how a man so ill could make it through open heart surgery. The doctor said he felt my husband could withstand the operation, to give them, and him a fighting chance, but he would need the dialysis. I signed the paper in hopes that this was true, but in my heart, I knew he was very ill. They told us he would be moved to another ICU and that we should go to that waiting room. It took them six hours to move him and put him on dialysis, they kept saying there was no room for him. I got more information from the ICU nurses, than I did from the doctors. I told them that I thought my husband might have suffered a stroke when he had the extreme headache a few days prior. They called in a neurologist, who ordered a CAT scan of the brain. That took hours, as the machine had to be brought up to ICU. The nurse told me the technicians didn’t want to bring the machine, she had to threaten them to get it up there asap. The findings were not good.

My husband had an aneurysm right around where the lesion was. They were concerned about it bursting. We spent another night in the hospital, praying and wondering if we would bring my husband home. The next morning, the doctor came and told me that the nurse had allowed my husband to wake up a bit from the coma inducing drugs, to test his response. It wasn’t good. They said he only had brain stem function, meaning he was brain dead. We were in shock. Just two days prior, doctors were assuring us that my husband was strong and would pull through. To this day, I have issues with the lack of care afforded my husband, and the lack of information given us. Though the outcome may have been the same, I feel he suffered needlessly.

I asked the doctors why they released him when he was still so ill, why did they wait so long to get him to ICU, to put him on dialysis. The answer was that “sometimes we wait to see if the body will recover on its own.” I have spoken with doctors who are appalled by that remark and by what happened to my husband. In the extreme anxiety and tension of a loved ones illness, it is difficult to sort things out.

We are taught to listen to what doctors are saying and trust them. After this experience, I know better. Listen to your gut. Insist on proper treatment. Go to the nurses station and ask for a supervisor, anybody, to explain what is happening. Doctors and nurses are people too, and make mistakes. I hope that this information on sepsis will reach medical professionals so they are better informed about the signs of endocarditis and sepsis and act quickly. I feel that my husband should never have been released from the hospital. He grew gravely ill those few days he was home.

I spoke with doctors involved in his care, who should have known that his chills, rigors, swelling and shortness of breath, were all signs that he needed prompt medical attention. Instead, we were told otherwise, to stay home. In retrospect, I should have taken initiative and brought him back to the ER. I will have to deal with that guilt for the rest of my life. I feel my husband suffered needlessly, that at the very least, he could have received some palliative care to relieve his pain. I have come to terms with his passing, but not with how his illness was handled. It is difficult to look back and write his end of life story. I do so in hopes that it may help someone who experiences a similar ordeal. I hope that doctors peruse these testimonies to get a better understanding of this devastating illness and take the proper steps necessary to save lives, or give comfort care to those who succumb.

It is tragic irony, that my husband was a career lifeguard, saved so many people, yet ended up slowly drowning in his own fluids, feeling every bit of the pain of sepsis and organ failure. I feel that my husband was “triaged” to the low point on a waiting list, because of his age and pre existing conditions. I can’t change what happened to my husband. Though it is painful to look back and remember the cascading events that led up to his death, maybe, just maybe someone will read this and learn from it.
Don’t just rely on information from doctors, they don’t know everything; ask questions, insist on answers and better care. Go with your gut. Advocate for the patient. If nurses are not listening, go to a supervisor, or higher up.

If your loved one, or you have had sepsis once, odds are you may get it again. Each bout is more difficult to recover from. Treat every fever, or other symptoms, as a possible relapse.The doctors were looking at high fever as an indicator, and missing the other signs.

Learn about post sepsis syndrome, and educate yourself about sepsis.
My husband was a strong and stubborn yet loving man. He worked hard for his family. He was looking forward to early retirement. He passed just five months shy of 62. We all miss him very much.

Source: Sally Moses, Wife