Life After Sepsis

Life after sepsis is different than before.  Now my weeks are filled with doctor appointments and tests. Last month I saw all my specialists and had a CT scan and a nuclear stress test. I have bloodwork every month to make sure that all the organs are functioning normally. We want to catch any changes quickly and assess them. The most recent test showed the liver and thyroid have returned to normal but the kidneys have not. I currently have stage 3 kidney disease but the nephrologist thinks they may still improve.

I take my blood pressure twice a day and record it. I take my temperature four times daily. These are two of the early signs of infection or sepsis returning. All the doctors check the numbers.

Daily life has changed. I walk unaided, even stairs.  No wheelchair, walker or cane. I do have to concentrate on walking because I have a tendency to drift to the left if I’m not paying attention. If you were walking behind me you might think I was drunk. 

I’m right handed and my right side has always been dominant but now it’s weaker than the left. I’m told it’s because all the seizures were on the left. At first it was very weak but now it’s only slightly so.

When I left the hospital I had a noticeable tremor in both hands and when stressed a tremor in my upper lip. Since my occupational therapy the hand tremor is minor unless I’m tired or upset. The one in my lip has been gone for about a month.

I had afib in the hospital but it’s been undetectable on my last few doctor visits. They’re still watching for it.

My appetite is still poor and I’m still losing weight. I force myself to eat at least twice a day and I drink more water than I’ve ever drunk. I tire easily and have to stop and rest, often in the middle of activities.

I have trouble sleeping and have nightmares frequently. I feel as if  my mind is trying to piece together the missing weeks. I also experience severe mood swings from anxiety, depression and anger. My therapist and I are working on that. One thing she suggested was that I visit the ICU. I did and it really helped. I saw my room and met several people who had cared for me. It was very emotional but gave me some answers and made me feel calmer.

The thing that bothers me most is my short term memory loss. I have to write down anything important because I may forget it. I also have trouble finding words as I’m speaking. The doctors assure me it will improve when the anxiety and depression are under control.

I thought I was dealing fairly well with all the changes, then I got hit with a new one. My hair started falling out, something no one had warned me about. Every day more came out on my pillow, in my brush and in the shower. Last week when I couldn’t stand the patches of scalp showing, I had a friend give me a buzz cut. Will it grow back, who knows? I keep telling myself, it’s only hair. I still have my life.

I AM A SEPSIS SURVIVOR !!

Recovery from Sepsis

The statistics on sepsis are not good. People with sepsis face a 15 to 30 percent chance of death. For those with severe sepsis or septic shock it climbs to 40 to 60 percent. One in three survivors is back in the hospital within 3 months with infection or sepsis.

According to the CDC, recovery from sepsis can involve some awful stuff: general weakness and fatigue, breathlessness, body pain and aches, difficulty moving, difficulty sleeping, lack of appetite, food doesn’t taste good, weight loss, dry itchy skin which may peel, brittle nails and hair loss.

Survivors may avoid people and want to isolate themselves, have flashback to their illness, confusion, anxiety, poor concentration, memory loss, anger, depression and frustration.

I am one of the lucky ones, but at times it hasn’t felt that way. I spent 17 days in the hospital, most of that time in the ICU. I only remember the last two days. The rest of the time I was either in a coma or drugged so heavily that I have no memories.  Rob and I are convinced that my brain was just protecting me from the whole painful experience by shutting down any memories.

The days I do remember are fuzzy. I couldn’t sit up by myself but the nurses started putting me in a wheelchair and pushing me to the bathroom. There they would help me, then put me back to bed. The feeding tube had been removed and I guess they brought me meals though I don’t remember a single meal. They said I refused to eat. I spent most of the time sleeping.

The doctor in charge of my case sat down and had a talk with me, the first time anyone had really told me what was happening.He did most of the talking because I had difficulty speaking. He explained my diagnosis and stressed that I had to start eating. He said he didn’t care what I ate or how much as long as I ate something several times a day. As if on cue Rob walked in with a McDonalds bag with a breakfast sandwich and a milkshake. The doctor had a big smile and said “perfect “. Do you thing they conspired on the timing? I think I had two bites of the sandwich and a few sips of the shake but they both seemed pleased.

The next thing the doctor said didn’t go over well. He said I was being transferred to a skilled nursing rehabilitation center. I wanted to go home.

The next day they strapped me into a wheelchair and a van took me to rehab. I was surprised how bright and quiet it was. I spent two weeks at rehab and I can’t say enough good things about it. The nurses and aides were all wonderful, friendly and attentive. The therapists were tough but did all kinds of extras, like a manicure and brushing my hair, to make me feel better. The doctor had himself had ehrlichiosis so he understood some of what I was dealing with.

This was my room.

The first couple days I mostly slept but they helped me sit up and even to stand. Then with an aide on each side they helped me actually walk to the bathroom. 

They were concerned that I didn’t want to eat so they sent the dietician to see me. She and I hit it off and she started making special meals that she thought I might like. After breakfast each day she would bring me a big bowl of fruit to snack on and before she left each day she brought me juice, fruit, chips and cheese crackers to snack on overnight. She even sent food for Rob so he could join me for meals and encourage me to eat. During the day nurses dropped by with juices and protein drinks. They wanted me well hydrated and getting more protein. I had a strong aversion to meat, caffeine and sweets. I learned that there’s a condition known as Alpha-gal that can be a result of ehrlichiosis. It’s an allergy to meat and dairy. They tested me but I was negative. I can eat meat, it just has no appeal.

After a couple days of getting acclimated the real work began. The doctor had told me I might need a wheelchair for six months but I didn’t agree. The nurses and therapists let me walk to the bathroom using a walker as long as one of them went with me. A sweet aide came and wheeled me to the whirlpool bath and she and Rob helped me in. It felt wonderful on my sore muscles. She started washing my hair and found that my hair was full of glue from the brain sensors. She and the therapists worked on my hair every day rubbing in conditioner to remove the glue. I still had a lot of glue left when I got home.

The physical and occupational therapists walked me up and down the hall every day with a gait belt around me so I couldn’t fall. They gave me exercises to work my fingers and they sat and talked with me to improve my speech. I asked if I could try stairs and the second week with one of them on each side I walked up and down three steps. I felt exhausted but I knew I wouldn’t need that wheelchair.

Isn’t this the cutest flower arrangement? The Lapdogs and their Mama sent it. We met years ago thru the blog and though we’ve never met in person, we are good friends. 

After two weeks the therapists said I was ready to go home if I agreed to have home health care. I did not want it but the doctor and Rob overrode my objections. That morning I had a special breakfast then a real shower. Finally the time came and Rob wheeled me out of my room. A couple people who had been in therapy with me came to say goodbye. When we got to the front desk my nurses, aides and the dietitian were all waiting for me. There was a big shopping bag  on the desk and I thought it was a present. It was the worst present ever. The bag was full of medicine, a thirty day supply. 

Getting home felt good but exhausting. I was too weak to connect with the dogs, though Mackey slept next to me every chance she could. Rob insisted I eat several times a day and kept getting me juice and protein drinks. I had lost 25 pounds in the hospital and was still losing.

Next I met my ‘home team’.  A nurse came weekly for a month to check on me and go over any changes in my meds. A physical therapist came weekly for two months and helped me learn to walk on my own. There were silly dance steps to improve balance and a timed game where I had to sit and stand designed to test my strength. The second month we began walking outside which included our front steps. Again I wore a gait belt on our walks so he could catch me if I fell.

My occupational therapist and I bonded right away. We played with therapy putty, used elastic bands and lifted weights. She saw some of my knitting and encouraged me to try it. At first it seemed awkward and slow but now I can do pretty well.

We talked a lot about my fears and expectations. She felt I was experiencing PTSD and called my doctor to recommend  talk therapy for it.  I was actually sad to see therapy end but they both felt I could  continue on my own and if I needed more help, it was available.

So now I was home and healing. Life was good again, right? Well not exactly.  Next post I’ll let you in on what life after sepsis is like.

Treatment of Sepsis

Sepsis is usually treated in an intensive care unit. Specialists in many fields may be involved. Depending on the stage of the illness and the organs involved treatment varies. The first step is

stabilizing the damaged organs.

Sepsis moves fast so treatment must too. Usually it starts with oxygen and antibiotics. If the source of the original infection is known, appropriate antibiotics can be started. If unknown, then several will be used. In my case I was intubated even though I was breathing on my own. The ehrlichiosis hadn’t been diagnosed yet so they were giving me four to six different antibiotics to try and stop the infection.

Then came the tests and scans. It was determined that my kidneys had failed so they started dialysis. Because my liver was failing I had severe anemia. That had to be addressed The doctors wanted to do a lumbar puncture but my platelets were too low so first they gave me platelet transfusions. I was having  seizures so they had me on continuous brain scans to watch them. They continued for five days and lasted from 20 to 40 minutes each. The neurologist started anti seizure drugs. My heart was beating fast and began to have irregular beats so the cardiologist began heart meds. Then there were the blood tests.

They tested for everything and the infectious disease doctor sent off a blood culture that finally showed what they were all looking for, the cause of the infection ….ehrlichiosis. That damn tick bite.

My hand and arm bruises from all the needles.

As I was still unconscious thru all this I had all sorts of tubes and wires keeping my body functioning. Once ehrlichiosis was discovered they started doxycycline and I soon came out of the coma. Then I made some good attempts at removing the feeding tube and oxygen. I’m told the nurses and I had some battles about that. After two weeks in ICU, I was finally transferred to a room in the general hospital to rest and start the long recovery.

Symptoms of Sepsis

How does sepsis make itself known? While it’s doing its destruction on the inside of the body it’s showing some signs on the outside that need to be recognized and dealt with quickly. Of course not all people will show all symptoms but a combination of several should be addressed.

In this list I’ll put the symptoms I experienced in bold letters.

Rash - this is more common in children

Clammy skin

Weakness

Fast heartbeat

Low blood pressure-systolic less than 100

Fever or hypothermia- low body temperature 

Shaking or chills 

Shortness of breath 

Reduced urination

Confusion or agitation 

Slurred speech

Extreme muscle pain

Of course some of these are the “flu like symptoms” we always hear about but combined with a possible infection from any source, sepsis can be already setting in and the damage to the organs can be permanent or even fatal.

This was my diagnosis in alphabetical order:

Ehrlichiosis chafeensis

Severe sepsis

Acute posthemorrhagic anemia

Acute kidney failure 

Acute metabolic acidosis

Acute viral hepatitis

Disseminated intravascular coagulation 

Dysphagia oropharyngeal phase

Encephalitis and encephalomyelitis

Hepatic encephalopathy 

Hepatic failure 

Migraine 

Paroxysmal atrial fibrillation

Pneumonia 

Pure hypercholesterolemia

Thrombocytopenia

Toxic encephalopathy 

Unspecified convulsions 

Sepsis affects the whole body, the brain, heart, lungs, kidneys, 

liver, thyroid and of course the blood. And sepsis moves fast. I came within 90 minutes of dying. This isn’t something with which you want to take a wait and see position. If someone has a combination of symptoms and a possible infection, get them to a hospital as fast as possible.

Sepsis isn’t to be taken lightly.

Sepsis Awareness Month

 Until recently I, like most of you, was vaguely aware of sepsis. I knew it was bad and often fatal but I didn’t know the details such as the symptoms, treatments and after effects. I didn’t know the frequency of cases or the statistics on survival. But that all changed for me over the past four months. I am now a survivor of sepsis and I live with the aftermath.

September is Sepsis Awareness Month and I’ll be sharing my experience and what I’ve learned with you. You are certainly free to tune out because it doesn’t sound like much fun but if it can happen to me it can happen to anyone including someone you love or even you. We all need to know the signs. 

Septicemia or sepsis used be referred to as blood poisoning. It happens when the immune system is overwhelmed by infection. The infection can come from anywhere. It can be as big as a result of surgery to as small as a scratch from a dog. Consider that for a minute. Mine was caused by a bite from a tick carrying the ehrlichia  bacteria.

There are three stages. Sepsis, severe sepsis (which I had), and septic shock. In the United States there are 1.7million cases of sepsis annually. Of those 270,000 people die.

In my next post I’ll introduce you to the symptoms. Stay safe everyone.