Barbara

Survivor

I am a sepsis survivor. My story began in early March 2016. I had some sinus congestion on the left side, and then developed a scratchy throat. which quickly subsided with my over the counter remedies. A few days later I had a routine follow-up apt with my PCP, so I mentioned it and he examined me. He found nothing conclusive and I had no fever or lung congestion, and advised me to continue what I was doing for the sinus congestion, but did stress that if I developed a fever to come back in. He also suggested Flonase, but when I looked I saw that it was for allergy and was very expensive, so I did not get it.

A couple of weeks later the congestion was still there and I was feeling no better, so I returned to the office and was seen by his NP, who did a more thorough exam and still found nothing conclusive, so she advised to just keep doing what I was doing. The next week I flew to St Louis to visit my daughter and grandchildren. I was still feeling the congestion and also had some headaches and neck pain, but no fevers. I attributed that to the flight & traveling. However, when I returned home a week later I was feeling somewhat worse and very tired. I returned to the office again and was seen by the PA. She also could find nothing more and determined that it possibly could be allergy related and suggested I take Flonase as it is also an anti-inflammatory med, which I had not seen when I 1st looked at it. I added that to my other remedies and about 6 days later things began to change very rapidly.

On 4/19/16 I went to work on a windy & cold rainy morning. Our office was located in a basement and the storm door was getting caught in the wind. I experienced a chill each time this happened. After I left work I went home and fell asleep in the chair. When I woke up I was having shaking chills and when I took my temperature I had a fever of 101. I determined that I would return to the doctor’s office again in the morning as it was now after hours. However, when I awoke the next morning I still had the fever and now had severe pain in my right shoulder. I then determined that I couldn’t wait for the office to open, so I had my husband take me to the ER. They took all my information, ran lab tests, x-rays, & EKG which were essentially inconclusive, except for a slight WBC elevation at 12.52. They took blood cultures and sent me home to rest around noontime. I slept most of the afternoon and around 7pm, the ER called me & said I needed to return immediately as my blood cultures was showing that I had streptococcus pnemoniae bacteria in my blood. They were adamant that I needed to return immediately.

When I tried to get up, I still had the severe shoulder pain and now had severe pain in my right arthritic knee and also some pain in my left foot. We realized very quickly that my husband was not going to be able take me so we called the ambulance and they transported me back to the ER. From that point I remember very little as I was in & out of consciousness. I am told that my fever rose to almost 105, which for me is like 106 as my normal temp is 97. They also repeated the blood work done earlier and the WBC had risen to 19.41 in those few hours. They were very concerned about my heart, and after they got me on IV antibiotic & stabilized me,

I was sent to ICU and later to regular floor on telemetry. At this point lab results showed WBC was 23.61 before the antibiotic started to kick in. They also had arranged for MRIs of my shoulder, knee & foot. Since they were to be done at another hospital & I also needed consults with an orthopedist and the infection control doctor, they transported me and admitted me to that hospital the next day which was Friday 4/22. They had scheduled me to have the knee & shoulder MRIs done together, but I was in so much pain that I could only tolerate the knee MRI that day. That evening the orthopedic doctor came in and aspirated 80cc of pus from my knee & ordered surgery for both the knee and also the shoulder (pending MRI results the next day) to drain and clean the joints on Sunday 4/24. We were told they removed 90,000 WBCs.

I was still in severe pain and could barely tolerate anyone touching me . On Monday 4/25 I was taken for an MRI of my left foot, but it was determined that there was no abscess to drain, but some osteomyelitis. However, the infectious disease doctor had ordered a PIC line to be inserted as I was going to be on IV antibiotics for an extended period. Arrangements were made to transfer me to rehab for monitoring and PT to restore my mobility. During this period I never had any lung congestion and they determined that it must have come from the congestion which had been in my sinuses. I started calling myself an anomaly and my providers agreed! (I have begun to think that it was the combination of the airplane flights & starting the Flonase, which caused the sinuses to start draining rapidly into my blood.)

On 4/26 I was transferred to rehab and began my recovery. I was making some progress, but still experiencing great pain which limited my mobility. I also started having small temp elevations. When I was taken to see the infectious disease doctor for a follow-up apt on 5/16, he was greatly concerned that my mobility was not better (I could barely lift my right foot off the footrest of the wheelchair); that I was having daily temp elevations; and that my CRP level which had started at >300 on 4/23 and only dropped to 182.4 on 5/13. He immediately contacted the NP at rehab & the orthopedist and they determined that my 1X/daily antibiotic was not strong enough and I would need one to be given 3X/day. As soon as the new antibiotic was started, the weekly CRP level dropped to 13 by 5/27. My mobility also began to increase much more rapidly and I was able to be discharged from rehab on 6/14 once I completed the prescribed IV antibiotic, removed the PIC line, and could begin oral antibiotic. I was in home health care for 2 more weeks, and was then able to continue in outpatient PT for July & August. Follow up appointments with infectious disease doctor on 7/18, cardio doctor on 7/29, PCP on 8/10 all cleared me from this diagnosis. The orthopedist had seen me in June for follow up & then scheduled another apt for 9/29 in which I was cleared from sepsis, and now just have my reduced cartilage arthritic knee which may need to be replaced at some point.

It has taken a very long time to return to ‘normal’, but when I think of the alternatives… As I was leaving the hospital after my final appointment with the infectious disease doctor, I saw a pamphlet on SEPSIS and picked it up. That was when I found out how insidious SEPSIS really is and how truly fortunate I am to be here; very grateful that I had a small local hospital with excellent providers who jumped into action once they learned my diagnosis; and did not have any organ failure, or long term effects. And I really want to make people aware, because I have worked in the medical field for many years and was never aware of this.

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