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Sharing my experience with sepsis
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Sharing my experience with sepsis

I am very happy I found this forum, as I see others are experiencing what I am, which is very difficult to deal with.  I am a 68-yo female.  Mid-January 2013 I had brief flu-like symptoms and body aches.  I woke up slurring my speech on the 2nd morning of symptoms and my husband called the ambulance.  I was evaluated in ER and labeled "sepsis suspect".  My breathing was very rapid, my blood pressure low, and my heart was in afibrillation.  I was in ICU for 4 days, and given lots of fluids and there were doctors of nearly every specialty working on my case.  I was diagnosed with pasteurella, which doctors say I got from my cats.  I had no open scratches or cat bites.  My cats are all old, so I don't often get scratched by them.  I developed reactive arthritis and my entire body became stiff as a board.  When the nurses would reposition me every 2 hours I cried out in severe pain.  I was in the hospital a total of 2 weeks.  After ICU I was moved into a "step down" section which still has a higher level of care than the regular beds.  The bacteria had created "vegetation" on my heart valves, and there was concern about permanent damage, although after a month of IV antibiotics through a PICC line, that infection cleared and my heart seems to be OK, although it is being watched closely.  Very gradually I started to move my body again.  I could not feed myself or reach my tray table for several days, and as I worked to be able to do these things, it was very painful.  My blood chemistry was all out of whack due to the huge amount of fluids they administered.  I became anemic and had to be given two units of blood.  At the end of the two weeks in the hospital I was sent for another two weeks to a rehab facility where I received 2.5 hours of physical therapy a day.  My left leg was always worse than my right and the joint made crunching and grinding sounds.  I came home February 13, but never felt really well, although I continued therapy as an outpatient.  I began to get ill again in March, with vomiting, diarrhea and occasional low fever, accompanied by urinary incontinence.  On March 20 I was again in the ER (at the insistence of my family doctor) and was diagnosed with a urinary tract infection (UTI).  The CT scans revealed a small kidney stone, so I went through a procedure for them to remove it and there was pus behind it.  So, I was on antibiotics for over three weeks straight, Ciprofloxacin by mouth at home, but IV antibiotics while I was in the hospital for another 5 days..  I stent had been placed in my ureter/bladder, and apparently I passed the stone during the infection healing period. I now feel better than I have since this all started, but like others in this community, I get tired very easily.  I sleep 9-10 hours a night, and sometimes nap 2-4 hours a day.  Through the CT scan they learned in the hospital that my left hip's cartilege was destroyed, apparently by the bacteria invading it.  The head of my femur bone now rests direction in the pelvic capsule, hence all the grinding noises of bone on bone.  I will need a hip replacement eventually, but they want me to wait at least a year to try and be sure all the infection is gone, as the bacteria gravitates towards artificial joints.  My family doctor told me I also have PTSD from the experience.  Certain sounds of the hospital will cause me to get panicky and start crying.  Also, I became severely anemic

I feel like my formerly very active life has been destroyed.  I thought I was in really good health for my age, borne out by annual check-ups.  I practiced hot yoga three times a week, and walked in the park other days.  I ate no meat, only fish and dairy.  Now I walk with a cane.  I am not sure if I will ever be able to be active physically again.  I was on track to live a long life (my mom lived to 99.5), but I feel that this disease has permanently affected my system and I could die at anytime.  It is a very depressing and horrible feeling.  My family doctor said healing will take about a year, but I see a few in this community who are not well after 2+ years.

Thanks to all of you for listening.  I look forward to continuing to read of your experience recovering with sepsis.  

3 Comments Post a Comment
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144586_tn?1284669764
I am pleased you are recovering. Fortunately, the bacteria on the heart valve have apparently not colonized. There are two procedures using ultrasound to evaluate bacterial on the heart valve. One is external and the other internal. Make sure BOTH of them are/have been performed. A heart-valve replacement and a systemic bacterial infection often go hand-in-hand. Often you never entirely rid yourself of a bacterial infection. It simply remains encapsulated in a biofilm. Tuberculosis bacteria are a case in point. Basically, you can assume you are in remission. Thus you must insure you keep up your immune system, and if diabetic keep glucose levels within normal limits. The hip replacement operations and implants are very good these days and you will be pleased when you eventually undergo the procedure. A lot of damage is done in a systemic infection because of toxins released when a large quantity of bacteria are killed. Try to keep track of your fluid intake and keep well hydrated. From what you say, it appears you have received top-notch care. A letter of thanx to the nurses is always well in order. My preference, if you have been well-treated is to pre-pay for pizza's to be delivered to the ward, the ICU and the ER. Many antibiotic resistant infections have developed and you are fortunate to have an organism that responded to treatment.
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Thanks for your helpful comments.  While still in the hospital I was told that the bacteria was seen as "vegetation" on one or more of my heart valves, and there was a "floating" bunch of bacteria that had not yet attached itself to my heart.  That was diagnosed with a TEE test (transesophogeal echocardiagram).  At the end of the course of antibiotics, I had another TEE test, which showed the heart valves to be free of bacterial growth.  And later in February I had a heart ultrasound, which also did not reveal any damage from the bacteria.  Yes, I did have outstanding care at Christiana Hospital in Newark, DE.  They were definitely following the sepsis protocol that is being distributed across the country.

The whole "encapsulation" idea troubles me, as it seems it is like living with a time bomb in my body that could go off anytime.  From what I have seen about hip replacements, you are indeed right they continue to refine them.  I have already found a doctor fairly close to me who does the anterior entry into the hip, which cuts fewer muscles and from which you recover more quickly.  I am on pain relievers around the clock now, and look forward to not having to do that eventually.
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139792_tn?1299416777
Professional narration of your disorders and treatment and professional suggestion by caregiver.It is good to know that you were given best possible treatment.Wish you a speedy recovery.
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