Three-Time Sepsis and Septic Shock Survivor

I’ve had sepsis three times & septic shock with liver failure once, all within a year and a half.  I honestly don’t know how I survived any of it. The first time I heard the S word it was December 2015 and I was eight months pregnant with my third child. I had severe hyperemesis gravidarum, a deadly form of morning sickness. I was given IVs 24/7, that ran medications, fluids, electrolytes, and calories. I felt a bit off all day, and my PICC line that fed me liquid nutrition (TPN) looked irritated. I had a temp of 99*F, and decided to drive myself to the ER. A few blocks of time are missing. It was the first time I saw those strange containers for blood cultures. The next thing I know, I’m laying in a bed, calling my husband, at work. “I have sepsis. I’m so scared. Please hurry.”  He was pulled over for speeding, and the officer let him go. The rest of the hospital stay is blank. It doesn’t exist in my memory. I don’t know how long I was admitted, and I only know it was around Christmas, because of photos. My two oldest children spent Christmas morning at Denny’s with my mom.

 

I was released at some point but back all too soon, because our son, Sullivan, was born two weeks later. He was perfectly healthy, and we went home to recover and start our new lives together.  Soon, I fell into a severe postpartum depression, that teetered on psychosis. Looking back, I didn’t want to admit I was sick, or that I needed help. I even went back to work, and pretended life was normal. It was far from that. After my first sepsis baby was born, my husband and I thought it was all a fluke. The hyperemesis, the sepsis, the countless hospital stays – it was so awful, and we wanted a blissful pickles and ice cream pregnancy.

So we tried for one more baby. I found a doctor who specialized in hyperemesis gravidarum, and we created a plan, if I were to get sick again. We had no idea what we were getting into. 

 

Genetic testing, a D&C, medication & four miscarriages later, I found myself pregnant again, and back at my OB’s office, getting a sonogram. Two babies! There was only one heartbeat, but it was strong. I miscarried the twin, and another horrific hyperemesis pregnancy began.

Some time in April 2017, was the second time I had sepsis. I was about 14 weeks pregnant, and had a PICC line for fluids and medication.  I felt sort of tingly & warm, took my temperature, and went to the emergency department. The insertion site of my PICC line looked slightly red & irritated, and a nurse pulled the line while I was in the ER. Cultures were taken, and I was admitted.

 

Again, my stay at the hospital is blank in my memory.  Doctors tried another PICC insertion, but could not find suitable veins.  Next step, a Groshong line. Groshong is a heavy duty central line in one’s chest, and much like a PICC, it is able to deliver medications & fluids, but can stay longer in the body & has a lower risk of infection. The cultures came back for the second bout of sepsis, and was a rare yeast. The Infectious Disease doctor had never seen this in 40 years of practice.  Doctors actually used Google to find out more!

 

The third time I had sepsis was a strange one.  I sat on the couch on Mother’s Day 2017, and felt water on my shirt.  My Groshong line had a tiny crack in it, and so back to the ER I went.  Radiology was called to repair the line, a simple ten minute procedure. When a dressing change is done on a PICC or central line, it is a sterile procedure, including the masks and gloves.  I noticed one of the nurses put on gloves, left the room, and returned wearing the same gloves. Two nurses & one radiology doctor repaired the line without masks and sterile gloves.  I laid on the table, petrified to speak up. Two days later, I was in an ambulance and back in the hospital with sepsis.  I was never angry with the non-sterile environment & risk they took with my health.  I was angry at myself for not speaking up. I had my Groshong line in for just over a month, when I became septic for the third time.  I have really no memory of the hospital stay, nor how long it was, as sepsis has destroyed my memory. I do know I had the infected Groshong line pulled and a new one surgically placed. I went through all of these procedures alone. I spent most of my hospital stays alone.

 

I was sent home, and placed on TPN, as I was getting zero calories & gained zero weight at 20 weeks of pregnancy.  With TPN, a person should have blood drawn regularly to check their electrolyte panel. I never had a blood draw. A new home health care company took over my care, once I had TPN.  I saw three different nurses in a week, and they all said different things.

 

The home health care company was incredibly unorganized. One evening, a bit too late for my taste, a random nurse came out to my home to do a dressing change.  She had Mike, my husband, watch, and told me I can do my own dressing changes from now on.

That was the worst piece of advice I’ve ever heard.

 

About a week later, I called home health for a dressing change, as I am not going to change it myself in the mirror.  I brought up the nurse who asked I change the dressings myself and the company was outraged. Not as much as I was, as they were charging my insurance company $35k a month for my care. I asked for a different nurse to come out and care for my Groshong.  The company tried to find one, and no one was available. Day after day, I called and begged for someone to come out, and was told no one was available.  I began to get scared that an infection might begin. Three days after my dressing needed to be changed, another random nurse came to my home.

 

I was in bed, as I didn’t feel well. I felt weak, my dressing was hanging off, even though I taped it back, and there was a weird discharge coming from my line.  I had TPN running 24/7, along with medications. Ten days with the same dressing, and I began to feel a sense of doom. The nurse took my temp, and it was 99F, she changed my dressing & was heading out.  I asked her to check my temperature one more time, and it was 104F. She said, “If you start feeling bad, call a doctor.” And she left. Moments later, I was violently vomiting, shaking, and turning a pale gray color. I was freezing cold.  My teenager sat on my bed with me & urged me to call someone. I called a friend and no answer. The teenager begged me to call an ambulance, and the next thing I knew, I’m being wheeled out of the house, and telling my children I loved them. I began hallucinating in the ambulance.  One of the EMTs kept me as coherent as possible. I woke up in the ICU, very confused.I was hooked up to everything. I was in sever septic shock and my liver was failing. I had a Dobhoff feeding tube placed.

There’s a photographic moment, clear as day, in my memory. An obstetrician, an RN, an MD, an anesthesiologist, and one more, I don’t recall. I had a couple bands around my waist to measure the baby’s heartbeat.  I was 25 weeks pregnant.

 

It was surreal to hear a heartbeat go from the 160bpm, and just drop. The obstetrician placed her hand on my leg. The anesthesiologist asked if we could do a cesarean immediately. The obstetrician said there was no way I would make it through, and she said she was making the decision to save me, because I had children at home.

 

Everyone stood around me in silence, as I tried to process that my daughter died. A doctor spoke to my husband, outside of the room, told him the baby didn’t make it, and it’s not looking good for his wife, either. There’s another block of time missing, but I glanced at my husband, his face in disbelief, no words, just confusion of what was happening. I shopped for bassinets in the morning & cremation services in the evening. Time passed. Minutes. Hours. Days. I felt something. A kick? My body betrayed me. And another? A soft movement, but I was drugged and delirious. My ICU nurse came in & I mentioned it, and she replied with remorse that it was my mind playing tricks. I asked her to please bring an OB and a sonogram, just to rest my mind.

 

Warm jelly & the ultrasound wand was now on my tiny 26 week belly, as I was still losing weight & did not look pregnant. The OB scanned and saw a heartbeat, slow but it was there! She couldn’t believe it, brought others into the room. Baby came back to life. Everyone was in disbelief, including Mike and I.  We were warned to expect a very disabled child with extreme disabilities, and possibly not surviving long. Eventually, I was moved into recovery and the doctors tried several times to place feeding tubes, as I would vomit them up, was unable to speak, and one I yanked out in my sleep.  I had seven placed during my fourth bout with sepsis.

 

The hospital stay is such a blur, and the days and nights run together.  One morning, my obstetrician stopped in to say hello. He had a bewildered look on his face and bluntly said, “You should be dead.”  I chuckled and replied, “You can’t get rid of me that easy!”

Baby was evaluated, had a good heartbeat, but still an unknown of what she would be like when born.  So, we began a very difficult wait. I eventually was discharged from the hospital, and went home. I was incredibly weak, and needed a lot of help, but was too stubborn to ask.  Looking back, I’m not sure how I dealt with day to day activities. A few weeks later, I went into early labor & Juniper was born that evening via cesarean section.  She weighed five pounds, and went to the NICU. I began my recovery from surgery and a very tough pregnancy.

When I was in ICU with septic shock, a blood clot formed. No one was aware of this, as I had no symptoms. The clot traveled to my heart and began to damage it. Eventually, it would move to my lung.

 

After Baby June was born, I’d visit her in the NICU every day. Recovering from two bouts of sepsis, septic shock, and a cesarean section, I was very weak and tired, but I never missed a day to visit. About two weeks after she was born I had this awful pain in my right ribs, but figured I pulled a muscle. I tried to ignore the pain. The next day, the pain was still there, so I went to get it checked out at the hospital, after I was done visiting Baby June in the NICU.  In the ER, x-rays and CT scans, and blood work was administered and the doctor came back, sat down, and put her hand on my hand. She said I had a massive pulmonary embolism & my right lung had died (she called it infarction). There was fluid surrounding my lung now, my heart had been damaged, and she said she couldn’t believe I was alive, with the extensive damage. My heart and lung will never be the same, and I’ll be on lifelong medication. I had two surgeries to drain fluid around the lung. Two bouts of pneumonia following, which was more hospital stays, one of those, having an anaphylactic reaction to medication I was given.  It is surreal how many times I’ve come close to death.

 

A year later, I open my eyes each morning and reach for pain killers. My joints and back are in excruciating pain, my muscles, weak. My brain suffered similar to a stroke, and is not the same. My lung, still scarred and will never be the same, and still hurts with a deep breath or yawn. My heart, permanently damaged, as well. Simple things like walking or breathing are so painful. Picking up a baby makes me grit my teeth in pain. I have nightmares, flashbacks and anxiety several times a week. I don’t like to leave the house, because there are germs outside. Post septic syndrome comes with a laundry list of debilitating symptoms. I have a team of doctors including a pulmonologist, hematologist, cardiologist, EP cardiologist, pain clinic, and gastroenterologist. I wear two medic alert bracelets. Seven medications a day and a handicap placard for the car. Coming that close to death left me alive, but broken. It doesn’t seem like a celebration. It’s more of mourning who I used to be.

 

— Jenny Lorraine

https://donate.sepsis.org/fundraiser/1570435 

https://www.facebook.com/jennylorrainesepsis/

Sepsis and PTSD

On Sunday July 1st, 2018 it was like any other day. I felt fine and cleaned the house most of the day. Later that evening I was feeling really tired but just figured it was from cleaning. I started feeling really cold and was shivering. I went to bed and woke up the next morning and felt like I was getting the flu as I was achy and not myself. I noticed my foot was a little red and swollen. My husband took me to a clinic and they were very concerned. I had a fever and my oxygen was low. They called an ambulance and immediately took me to the hospital. They started running tests. A few hours later my whole foot and part of my leg was bright red. They found that I had cellulitis caused by a cut on my foot.

My oxygen was dropping even more and I was struggling to breathe. They decided to admit me. The next day, after more tests they found that I had severe sepsis and ARDS. They admitted me to the ICU. When the doctor came in and explained everything I just couldn’t believe what was happening. I wasn’t sure what was going to happen to me. They told my husband and family that I need to be on a ventilator. I was so scared! So many things were running through my mind. Was I going to live or die? No one knew what was going to happen but we all just hoped and prayed for the best. I was on the ventilator for three days and mostly sedated. When they took me off of it I was relieved. I thought I was okay and going to get to go home soon! Later, the doctor came in and was still concerned. He talked about putting me on the ventilator again if I didn’t improve. I was terrified and begging not to be put on it again. They monitored me for a few more days and eventually I got better and was able to breathe with very little help with the oxygen tube.

On July 10, 2018 my husband went in for a scheduled surgery he had already planned and was unable to postpone. Luckily, it was just an overnight stay for him. I was so happy the nurses let me go see him before and after his surgery. They would wheel me to his room and come get me to take me back to my room. It’s not often you see couples in the hospital at the same time and I was very thankful that I was feeling better to be by his side after he spent the whole time in the hospital with me. On July 11, 2018 we were both planning to get released. We were so happy to get to go home. I was anxiously waiting for them to come take my PICC line out because I knew that was the only thing left to do. A few hours went by and then the nurse came in. She asked if I was ready to go home and of course I was like YES!!! She told me to lean back so she could take the PICC line out. I laid back and wasn’t scared or feeling nervous at all. Just excited to get to go home. She then said okay its out. I immediately felt weird and could barely breathe. I felt gurgling in my chest. She told me I was okay and that it may be anxiety. I then told her I couldn’t breathe and felt like I was going to faint. She knew something else was wrong so she called for the Emergency Response Team. The next thing I remember is the doctor standing over me and an oxygen mask on my face. I remember hurting so bad. It felt like something was sitting on my chest. I felt like I was going to die I was in so much pain. My lower half of my body was numb. I couldn’t move anything but my hands and head. They immediately rushed me for a CT scan and hooked me up to monitors. They told me I was in respiratory failure and had an air embolism from removing the PICC line. They took me back to ICU where they could monitor me overnight. I was doing better and was released the next day. After everything that I have went through I ended up experiencing PTSD (post traumatic stress syndrome) and anxiety. My life has completely changed. I am still experiencing anxiety everyday as I think back to everything that happened. I am thankful to be here today and to share my story with you.  I seem to be doing much better although I experience quite a bit of “brain fog”.

I want to thank the ARDS Foundation, Sepsis Alliance, and the Begin Again Foundation. I have found helpful information as well as funding to help with my expenses.  They’re truly amazing! I appreciate everything they do!

 

 

 

 

 

 

 

 

“Remember to Breathe”

-Terri Harper

“The LEISHLine was a life saver! I tell everyone about it.”

Spring 2017, I went to a rehabilitation center at a major university to detox from pain meds. (I’d been on them for over twelve years in one form or another.) 10 days after being admitted I awoke in the ICU on a ventilator. The last thing I remembered was being admitted and shown to my room. Apparently, I was given an overdose of Suboxone. I had a heart attack, and was found unresponsive, on the floor, next to my bed. I’d been laying there for five hours in a pool of vomit. I aspirated, and after developing stress induced hyperglycemia (320), metabolic encephalopathy, and hypoxia (63 percent O2 sat), I went into septic shock. They said if I was found only 20 minutes later, I wouldn’t have survived.

10 months later, trying to catch up financially from the loss, I was involved in a car accident. I hadn’t noticed, but I had an acute exasperation of heart failure and, within five days, I was in acute respiratory failure.

The LEISHLine came to the rescue. I was able to pay the deductible to have my car repaired, allowing me to return to work, saving us from homelessness.

— Lisa Partaker

An Optimistic Attitude and Prayers Were All That Tanai Needed to Survive

Sometimes things happen in your life and you don’t know why. You question yourself why me or what did I do to deserve this? But what you should be asking is what can I learn from it. I’m finally coming out to tell my story because I feel like I can help someone. I’m not here for opinions but to simply tell my story.

Six weeks after I had my daughter I was offered by the doctors a form of birth control called an IUD. I accepted because I was told that it was safe, and it was the best type. It had never given me any problems up until November of 2017. I had it for 3 years so far. I was told that it was good for 5 years. I went to my yearly checkup in October and was asked about birth control and mentioned that I had an IUD. They checked and told me that they couldn’t find it and that it may have fell out, but I knew for a fact that wasn’t the case. They sent me to get two types of ultrasounds the same day and I was told once again that they didn’t see an IUD. One day in the beginning of November I was at work I had a sharp pain and the bottom right of my stomach and the first thing that popped in my head was is this that IUD? But I tried to brush it off, but the pain was getting worse. I left work 3 hours early to go to the hospital. I went to the hospital and told them what was going on and what the doctors were telling me, so they immediately sent me to get an X-ray done. The doctor came in the with a weird look on her face and said the IUD is in there but its pushed up in your stomach, so you will have to get surgery. She told me to call my OBGYN to schedule a date. I went and talked to my OBGYN, told him everything and even showed him the X-ray picture that they allowed me to take, he also said I have to get surgery. So, I asked him how they would get it out and he told me they would cut me right under my belly button and use a scope. On December 13th I went in to get the procedure done. Instead of 1, I was cut 3 times. One under my belly button and one on each of my side. They were able to get it out, but it was broken into pieces.  I was told that it had moved up to my liver. When I left the hospital, I was bleeding, but my mom was told that it was normal. Overnight I begin to bleed heavier and the pain got worse. I was rushed to the hospital by ambulance and once I got to the hospital my mom told the doctors everything that was going on. They rushed me to have x-rays done and then rushed me to surgery. I was bleeding internally. After the surgery my mom was told that when they opened me up, my ovaries were black and that they had to give me a hysterectomy. After the surgery I went into septic shock causing me to be in ICU for a few weeks.  I died on that surgery table. While in ICU my organs began to fail. I was on a breathing machine, I was on dialysis because my kidneys weren’t working right. Everything that could possibly go wrong, went wrong. My parents were told that I was the worst patient on the floor and that they didn’t think I was going to make it. But with faith and God the prayers that everyone sent out, I am here today.

Next week, I have to get myself prepared again for a second surgery to have my toes amputated. But I swear I came so far and I’m not letting anything stop me.

The toughest part about my sickness was being away from my daughter for so long. The grant helped me a lot. It helped me purchase food, clothes and helped my family catch up on bills that fell behind. My message to other survivors is to stay strong! https://gofundme.com/37a4rr-saving-lives

– Tanai Smith

With No Warning, Mom of Twins Finds Herself Fighting For Her Life

My case of sepsis occurred during December of 2016. I was 33, living with my partner Will and our twin babies, Layne and Evalene. I had been experiencing bouts of severe constipation for many weeks prior, and I found myself taking stimulant laxative pills daily to combat this condition. But even the pills weren’t working, and so out of frustration, I began taking way more than what I needed. So, that week, I had started taking 2. The next day, 3. The day after, 4. Still with no bowel movement. By the end of the week, I had a ridiculous amount of this medication built up in my system. Night time rolled around, and I ate a few slices of pizza and also an ice cream sundae. Eating this food was enough to kick start all those pills I had taken. The next morning, I awoke with the entire room spinning and the most severe stomach cramps I had ever known possible. I also began vomiting right there in bed. I tried to make it to the bathroom right across the hall and immediately collapsed and lost consciousness. I had this feeling all over my body of bubbles, like I was floating in a bottle of pop. Every time the bubbles would make their way to my face and head, I would lose consciousness again. I remember calling my partner at work and telling him to get home ASAP, I was dying. I remember the ambulance crew coming and I was in a pool of blood and diarrhea and pink frothy substance, which I didn’t realize at the time was stomach lining. The entire floor was a pool of this, there was so much, it was in our bedroom and our kitchen up the hall. I remember the panic on the one woman’s face as she was trying to take a blood pressure reading and also a temperature reading and couldn’t because they were so low, they wouldn’t read. She shouted, Lock and load NOW, we’re gonna lose her!!! I remember total terror and the realization that I was going to die, right here in my hallway with my twin babies 2 rooms over in the living room, and there was NOTHING I could do but give into that feeling of weakening and succumb to it. They worked on me at the hospital diligently to pull my temperature and blood pressure up, using heat lamps and heating blankets. My pulse was sky high, also, about 160 that whole morning. I ended up having sepsis, septic shock, hypothermia and a nasty c-diff infection in my stomach. I was placed in the ICU for days and days. I don’t know if my sepsis was necessarily brought on by foolishly using all those stimulant laxatives, but I can tell you I have not even taken so much as a stool softener since that occurred.

The grant money I received was used as a mortgage payment for our new home and our new life we began for ourselves. To know that there is a foundation like this in existence to help us move forward and pick up the pieces of our lives is simply incredible. We cannot properly begin to express our gratitude and I cannot begin to explain how truly important that money was for me and my family. This payment was used to make our very first mortgage payment, and there’s kind of a strange beauty in that I think. It’s fitting.

I wish there was some kind of head’s up I was able to give to others, symptoms to keep an eye out for, but truly, this hit me like a mack truck. There was no warning, no feeling, no premonition. I went to bed and literally woke up dying.

– Susan Filer

Mom Who Nearly Died From Toxic Shock Syndrome Shares Her Message

I don’t mean to sound cliche, but I truly believe that I was meant to see your story today!  I mean, what working Mom of 2 just happens to turn on the 1st day of the Masters (in the middle of a work day, by myself, without my husband’s influence?) Needless to say, I was riveted, relieved (for your survival), thankful, and instantly felt a connection to you and this cause.  You see, I too am a survivor of Toxic Shock Syndrome and Sepsis.  There is so much more to my story, as I’m sure there is yours, but I will try to sum it up.

On May 4th, 2017, I became ill.  On May 7th, I was clinging to life in the ICU.  Here is a post from a Facebook page, “Inspiration for Aimee”, that my friends and family created for me when I was in the ICU just last May.  This was my only way of communicating with my loved ones all over the country during this two week ordeal.  Quite frankly, I believe this support system is a major reason why I’m still here today.

MAY 17, 2017

“Over a week ago, I thought that the stress of our move had just taken its toll on me. I got a fever, aches, chills and, over a course of 36 hours, I went from thinking I had the flu to clinging to life in the emergency room. I was told that I would have been dead if I had waited another hour to come in. This extremely rare case of toxic shock syndrome put my body into septic shock. In short, every single one of my organs was under attack. My fever rose to 106.8 degrees, I was put on a bed of ice (literally), and I was instantly put on 3 antibiotics, 3 blood pressure medications, oxygen, an immense amount of IV fluids, catheterized, and bunch of other things that I never want to think of again. My family (immediate and extended…you know who you are) went into overdrive to be by my side.

Throughout the course of this week, I kept making milestones (which I tried to update on this site). Although my body, vision and mind were and are still not “normal”, writing has been cathartic and my best way of communication. My physical journey is unbelievable to me and thank God for modern medicine. But my emotional and spiritual journey are almost even more incredible. I never lost consciousness throughout this time, so bear with me here as I say this. I did have contact with loved ones who have passed, I saw a white light, for those Catholics out there…I had my Last Rites given to me, twice. And now, I’m back home. I slept in my bed last night, I put my kids to bed (not successfully, but I tried), I woke up next to my husband just as I have done for over a decade. And life goes on…”

There is so much more to my journey this past year: learning to walk again, acclimating back to being a “normal” wife/mom/daughter/friend/etc., skin peeling, temporary loss of vision, extreme fatigue, weight gain, hair loss, a miscarriage…the list goes on.  But in THIS moment, I want to help, I want to spread this message! 

– Aimee H. Follis