From a Party to the ER and now learning how to live again…

On March 2, 2016, I had a lumpectomy to remove 2 suspicious lesions in my right breast. I remember the surgeon had a red nose that morning, like she’d been crying or had a cold. And I remember waking up and hearing that she got all of it – those worrisome lesions were gone. The procedure was outpatient, and within a day or so I was back to work as a fundraising professional for a cause I loved. About two and a half weeks later I noticed that the incision on my chest was weeping fluid. I called the nurse at the surgeon’s office and was told that an antibacterial ointment would be fine to apply to the wound, and to watch for any change. There was no change that I could see, but a few days later I began to suddenly feel extremely ill at a neighbor’s cocktail party after work. I was ridiculously thirsty and my back began to feel as if I was in labor (I wasn’t pregnant). After drinking glass after glass of water I felt nauseated and thought I might have a stomach virus or the flu so walked the half a block to my house. I began shivering uncontrollably as I walked in the front door and told my husband I needed to lay down and couldn’t help with dinner.

I called the doctor’s office after hours and had the doctor on-call paged. I was told to call back if my temperature rose above 102 or if anything else changed, and to call in the morning to see a doctor about the issue. My temperature remained at 102 all night, as my shivering continued, teeth chattering as I fell in and out of sleep. I remember opening my eyes and feeling as if they were covered in a film or glaze the next morning. My entire body hurt – like a painful sunburn on the inside of my skin and it was everything I had to fight to get up, to walk, to do anything. And the back pain… I dutifully called the doctor’s office the minute they opened and was told that there were no doctors in that morning, and to go straight to the ER. I was annoyed to have to go to the ER, because I’d done as the doctor had said and called first thing in the morning. It was a work day, so I threw on some work clothes, got in my car, and drove to the ER. I thought I’d stop in to the ER, they’d give me a shot or something and I’d then head in to the office. Boy, was I wrong.

The attendants at the ER desk whisked me into triage and then quickly into the back to be assessed by the medical team. I must have looked awful like I felt. A high school friend, now a nurse, was the first person I saw in that treatment room. She quickly got an IV in, then a doctor walked in and I heard the word “sepsis” – and then things get blurry.

I remember needles being stuck into my healing wound, into my breast, and the team trying to aspirate something with no luck. They were looking for the source of infection. My kidneys were failing and my heart was erratic. I had emergency surgery the next morning and the right breast was debrided. A pocket of infection was found deep in the breast and so a wide margin was removed along with the infection. The wound was left open with a drain. I kept asking about my back pain.

There were IVs in both arms, leg compression bands on both legs, monitors attached to my chest, back, and hand. I was given blood thinner shots every three hours in my abdomen, and checked for signs of infection all over my body regularly. Any urine I produced was screened by a nurse, and I was bleeding at the time. Looking back I’m not sure if I was menstruating or if it was my first episode of gross hematuria, urinating blood due to kidney malfunction. My veins were so weak it took 9 attempts to complete one of my regular IV changes. The heart monitor would ding incessantly and every time I would cry, or laugh, a nurse would run in and tell me and any visitors to calm down.

One afternoon, after a nurse left my room I saw something amazing – a tunnel of what looked like angelic warriors clad in pure platinum began to spin above my head. And then a ring of pure white warrior angels flew into formation spinning in the opposite direction. It was one of the most profoundly beautiful things I’ve ever seen besides the birth of each of my children. I felt a choice had to be made and saw my children’s faces, and then felt a pull through my body toward the ground. And the tunnel slowly faded. 

The breast wound was cleaned and dressed twice a day at first and I remember being so relieved when the drain was removed. I was nauseated and had no energy, and really struggled to walk with assistance to the door of my room on my first attempt up. My husband would help me on my regular “field trips” as far as I could make it down the hall. When I was released from the hospital the sun was so bright – I remember looking away from it and down at my legs and feeling horrified at the look of my skin. The muscles in my calves were gone and my skin was pasty white and so wrinkled.

My husband and my dad helped me wash my hair for the first time once I was back at home. My husband became my wound nurse – once my home health care nurses graduated me out of their care my husband cleaned the open would and bandaged it meticulously each time. The wound was open for the entire summer, slowly healing. My body was so depleted after sepsis, I was severely anemic, my kidneys continued to fight through infection after infection, and I was utterly exhausted. Things hurt that never had before – my joints ached. Every step was like a dagger cutting into my feet. When I had a follow up with the surgeon who performed the original lumpectomy, I asked her why I was still so tired. She told me I should just get a cup of coffee and get on with my life. 

I was left with anemia and colitis, and learned through my sepsis experience that I have chronic kidney disease. Physical therapy helped build some of the strength I lost. I couldn’t watch TV or listen to the radio for quite a while once I was at home. The noise and chaos would put me over the edge. I had night sweats and nightmares for months. My body reacted poorly to so many things inside and out after sepsis – new antibiotics, food, my wedding ring and my memory – it’s terrible now. There are so many things I’ve forgotten. It felt like I had to learn to speak again – I couldn’t look someone in the eye and talk for months after sepsis. I played word games on my phone and read as much as I could stand just to find the words again. It was painful and embarrassing. The pain in my joints continues, and I’ve noticed cold days are the worst.

Through it all, I’m thankful for my incredible husband and my family, my friends who knew to “do” instead of asking if they “could do” anything – and my new friend Audrey Leishman. As I searched for answers to the sepsis riddle after release from the hospital I stumbled across Audrey’s story. That connection has helped me on my darkest days, and now being able to help others impacted by sepsis through the Begin Again Foundation makes all of the pain bearable.

  • April Strickland, Sepsis Survivor and Begin Again Foundation Board Member

A Walking Talking Miracle

On September 25, 2011. I started feeling bad on a 7-hour road trip back to North Carolina from Tennessee. I felt feverish and it continued to get worse over the next week. A lot worse. Numerous trips to the doctor and emergency room, spinal taps, CAT scans, debilitating migraine headaches, violent vomiting, dehydration, more blood work, more urinalysis, chest x-rays.

​Then the night of October 25, 2011, arrived. Late that Wednesday night after a spinal tap, several x-rays and ultrasounds, more blood work and my fever spiking to almost 106 … I managed to finally give one more urine sample that took everything I had in me just to get out of that bed. That urine sample I gave was dark brown almost black and the final test that told doctors this was more serious than they thought. And then I heard something said by a doctor that I never should have heard. “She’s dying.” And within minutes I was being rushed to ICU.

​By this point, I had become somewhat disoriented but I knew enough to pick my chart up off my stretcher as we were going to ICU to see what my admitting diagnosis was. And there it was in big bold letters. My beast. The ugly beast that reared it’s head and was killing me that night. SEPTIC SHOCK. I knew what this was. I had worked in medical malpractice defense law firms for 15 years. This was not good. And I knew it. I couldn’t believe what I was reading. How did I get sepsis to begin with? And how did I have it bad enough that my body had gone into septic shock?​

Basically my body was poisoning itself to death. My organs had started shutting down. My kidneys obviously were on the list since my urine was almost black. My heart rate sky rocketed trying to keep up with my body. My fever was over 105. My blood pressure dropped to dangerously low numbers. My gallbladder all but quit. My digestive system went haywire.
My head hurt so bad that it felt like someone was swinging a ball bat against the back of my skull constantly. No pain meds were helping.I just hurt. Badly!

​I was swollen from all of the fluids they were pumping in me. I couldn’t breathe. I became agitated and confused. I had so many wires and monitors hooked up to me in ICU. My veins collapsed from the dehydration to the point I had to have a port put into a major vein in my arm.

​It was bad. I was dying. And I knew it. They could not figure out what was wrong. I had some type of infection but my body was rejecting any type of antibiotic treatments. It was not looking good for me. The survival rate for septic shock is not very good especially if it gets to where I was. I was sick. But I was so hopped up on so much medications for everything that I just really didn’t know what was going on.

The first several days of ICU are just a fog to me still to this day.  About day 5 in the ICU, my body finally started reacting to an antibiotic treatment but I wholeheartedly think that was because of the prayer I laid there and said.  I was so sick I wanted to die but I also didn’t want to leave my kids behind.  So I just prayed “Father, hold me.”  The doctors and nurses said they couldn’t explain it.  They had already told my husband that I wouldn’t live through the night and I closed my eyes to die when I whispered that prayer.  I just remember my room lighting up a bright peaceful and wonderful white light and feeling like I was being picked up and held in someone’s lap in my bed.  But that is about the time, my body started reacting to the last course of antibiotics. My heart rate started going down, my blood pressure started going back up.  I look at it that I am a walking talking MIRACLE!  

I spent a week in the ICU unit and another week in the step-down unit before I finally got to go home.  My discharge diagnosis: Ehrlichiosis (a tick-born illness) even though they are not 100% sure that was the culprit.  Possibility a UTI was behind it as well.  

I knew that I had hundreds of prayers going up for me the entire time. I have amazing prayer warrior friends. I had people praying for me that I didn’t even know! And for that I’m thankful.

I spent two months at home unable to work or do much of anything. I was eventually able to get back in the swing of things somewhat. But not without post-sepsis residuals. And as time has gone on, I still have traumatic effects from it both physically and mentally.  As a result, I have Post-Sepsis Syndrome, Complex PTSD, anxiety, depression, exhaustion, chronic nerve and muscle pain, cognitive disorder, a heart problem, an immune deficiency, Occipital Neuralgia headaches, and affects my facial paralysis sometimes.  

But I am so very thankful to be alive and beat the odds stacked against me that night. This beast has made me have a passion for those who have survived the illness as well as the care-takers and families of those who were not so lucky.  I am an ambassador for The Begin Again Foundation as well as an Advocate for sepsis survivors and a member of the American Trauma Society.   More of my story and about sepsis can be found on my website www.kimberlyhackettllc.com.

  • Kimberly Hacket, Sepsis Survivor and Sepsis Ambassador

A young life turned upside down and now on a different kind of mission!

My name is Alycia. I am about to turn 30 years old but was diagnosed with sepsis when I was 27. In October of 2017 my life was really coming together; I had a fantastic job, a new beautiful apartment and I had just adopted a little pug puppy. Shortly after making these accomplishments I started to feel sick. The best way I could explain what I was feeling is to say that it felt like I had a cold in my head and it just hadn’t fallen into my chest yet. I went to my primary and she diagnosed my symptoms as a sinus infection and prescribed me antibiotics. After 11 days of taking the medication nothing had changed and my symptoms just seemed to be getting worse. My boss advised me to go back to the doctor because she was concerned it might turn into something worse which it eventually did.

I took my boss’s advice and made another appointment but unfortunately, my primary was unavailable so I needed to be seen by another physician. I must have looked like death sitting in the waiting room. I could barely hold myself up. This doctor believed that I was misdiagnosed; that it wasn’t a sinus infection at all. Sadly he couldn’t name what it was but regardless he tested me for mono.

At this point going to work was out of the question. I had only been working at this company for about 4 months so I was blowing through my limited sick days and then my vacation days and then the sick days my coworkers donated to me. Nothing was improving so my Dad (who was by my side through all the doctors’ appointments) and I didn’t see the point of returning to my primary doctor so we tried an “Urgent Care” walk in facility.

We pulled up to the office. I could barely even get out of the car. I had developed a splitting headache. My Dad had to hold me up as a shuffled my feet into the building. When they took me back to the examination room the nurse could see how much of a struggle it was for me. The doctor came in and spoke to both my father, and myself, since I could barely get a sentence out. She decided I should get a chest x-ray. The nurse taking me to the x-ray machine took pity on me and tried to make the process as easy as possible.

After the doctor read the x-ray she came back with the diagnosis, pneumonia. As odd as it may seem, we were thrilled! There was a diagnosis, there was a clear way to treat it, and there was no more confusion. Seeing how weak I was sprawled across the examination table where I was waiting she decided I should be given an IV for fluids. She told us that after the dose of fluids most people feel brand new and can jump up and walk out no problem. I wish that was the case for me.

I was given several bags of fluid and nothing. I felt just as miserable. We asked what the next step should be. The doctor replied that sometimes the fluids take 48 hours to take full effect and if the fluids didn’t then the emergency room would be next. She advised if we had gone to the emergency room right then that they would just replicate everything we had just done. We took her advice and gave it 48 hours. Sadly, I kept slipping further and further away. My headache was getting worse. I could barely move, or even speak. My Dad ended up calling a nurse from our insurance company. She had asked to speak to me directly. After 2 minutes she said to hang up and call 911.

Once in the hospital I spoke to the woman in triage and told her that I had pneumonia and discussed a few other symptoms. Sadly, after being seen by the emergency room doctor my wonderful diagnosis was taken from me. I was told it was not pneumonia. The hospital performed so many tests it went from trying to find what I had to ruling out what I didn’t have. We tested for Lyme, mono, the flu, strep, my thyroid, my heart, and the list went on and on. At about 4:00 am I finally asked the doctor if we could just finish these tests as an outpatient since it was clear we weren’t getting anywhere. She looked right at me and told me I was not going anywhere. I was told if I had not come in my infection would have killed me. She pointed out that my heartbeat was 140 BPM, sometimes reaching even higher, and that it seemed that I had both a viral and bacterial infection. 

The doctors had to guess at the antibiotic to give me since it was unclear what had started the infection. Regardless, they did put double doses of antibiotics into my IV alternating with fluids. I was in the hospital for 5 days and went through at least 14 bags of fluid. We were given the diagnosis, sepsis of unknown origin.

For the past 2+ years I have been wrestling with what doctors are now calling Post Sepsis Syndrome. I have been to several types of doctors in an attempt to cure my symptoms. I have been to a primary care physician, a cardiologist, a nephrologist, a psychiatrist, a holistic doctor, a rheumatologist, physical therapists, and a specialist on Sepsis. Besides traditional medicine I have explored alternative therapies like reiki, reflexology, acupuncture, and therapeutic massage. Even after meeting with all of these complimentary medical professionals I have no definitive answers, just theories and experiments. No one can tell if my symptoms are the result of my sepsis infection, my Post Sepsis Syndrome, or if it’s something else. My quality of life has been taken from me. At 30 years old, I am no longer able to work, live on my own, or have personal relationships outside of the medical field.

Sadly, sepsis and Post Sepsis Syndrome are poorly understood, and therefore there has been very little research done. If anything I just wish there was more awareness of this very serious, dangerous illness and its aftermath. 

I have dedicated the little energy I do have into spreading awareness, becoming an advocate for other Post Sepsis Syndrome patients as well as a support system for them as well. A local newspaper has helped me in my quest by writing about my experiences and struggles. Also, a local television news station interviewed me for a feature on sepsis that I brought to their attention. I am excited to continue my journey by also becoming a Sepsis Ambassador for the Begin Again Foundation. Hopefully this will help educate the community.

  • Alycia, Sepsis Survivor

The True Definition of Perserverance

I am pretty health 54 year old woman who had a challenging year.  Bleeding ulcers in January, Shingles from Valentines day to Easter…then in an attempt to regain my health I started hiking.

On May 18 my baby graduated from Rockhurst University in KC. Being the vain person I can be…I wore heels.  I got a couple of blisters but being a tough lady..(NCAA division 1 soccer player, coach, beneficiary of 2 new knees in Nov. 2015) a couple of blisters…no big deal. Went hiking the next weekend….on Monday my foot was sore so I thought I needed new shoes.

On Tuesday and Wednesday the pain was increasing and on Thursday I finally went to urgent care where I was told I had Tendonitis.  Friday, I could not physically go to work.  Saturday I became violently ill, vomiting, chills, agitated, beginning of becoming mentally altered.  

My daughter who is a Physician Assistant, living in Indianapolis and preparing for a move to Colorado Springs to start a job told my husband to get me to the ER and she was on her way to St. Louis to be with me. 

We went to Mercy South in St. Louis where  I was whisked back to the treatment room.  After several rounds of test and many many questions of which many I could not answer….for example, what year was it, what year was I born, who was the president… I received a diagnosis of cellulitis, MRSA, Staph and then later the sepsis diagnosis! 

My blood pressure was low, ammonia levels were through the roof, heart rate of 130 BPM.  So the treatment began, antibiotics, blood transfusions, oxygen.  On Wednesday they did a surgical procedure to drain the foot infection.  I was in the hospital for six days.  I think back at the level of pain…no sleep, and total delusion.

I was finally released and sent home with a PIC line, I did four injections three times a day for the next three weeks.  Home health visited until the middle of August.  I was able to return to work on a limited basis starting two weeks after diagnosis.  If I had had a job that was not desk based I would not have been able to return to work for 5 months….therefore exceeding FMLA and could have lost my job.

I am much better off than many.  I have resumed a pretty normal life….hiking again, traveling, however I am now on the liver transplant list and undergoing extensive and costly testing.  

I really do know how lucky I am ….the mortality rate of this illness is frightening.  I could have easily lost my foot if I had waited 8 more hours, death at 24 hours.  The infection could have settled in my new knee replacements meaning I would have had to have two new knees which would require open wound for three months and months or years of rehab…or the possibility of being a double amputee.

My family and I realize the magnitude of all of this…we choose humor to deal with all of this.  We laugh at my hubby who insisted at the time this was due to tramadol and diet coke…he also made me put my foot in a bucket of ice water for 15 minutes to reduce pain and swelling (it did neither)

I have always been involved in healthcare,  My daughter is a PA and my niece a family medicine doctor.  Neither of them remotely thought of sepsis at the beginning. 

I really did not understand the seriousness of the illness until I met with my physicians after discharge.

I feel a strong need to help support others with this through support, education and raising funds for those who are not as blessed as Iam…..sometimes bad things happen for good reasons and I now have a new mission in life.  I am a very persistent woman who feels it is time to pay it forward and help others in anyway possible.  

  • Mallarry, Sepsis Survivor

A Mother’s Worst Nightmare

On December 27, 2018, I had a hysterectomy. During the surgery, my surgeon cut my bowel. So, for 3 days bowel leaked into my abdomen.

I went into septic shock, multiple organ failure, and respiratory failure. I was in a coma for a month. During my recovery, bills were overwhelming but the LEISHLine was there to help me not worry so much. I have had 17 surgeries this year to repair damage done by sepsis. Social Security denied my claim so now I have to go back to work because these bills are steady coming. I am blessed to be here, but I hate my children had to watch me go through all this. 

  • Nicole Daily, Survivor

A Husband’s Warning

In October of 2017 my wife came home from work with soreness under her right arm . I assumed it was just something that happened at work and we went to bed . The next morning she calls me at work and complained about not feeling well and wanted to go to the doctor. While we were at the doctors office she started vomiting about every 5 minutes. The doctor did the usual things along with a chest x-ray. They gave her some meds and scheduled a CT scan for later that day. We came home and she finally fell asleep after being up all night . I felt she needed the sleep and called them to postpone scan till next morning and they told me that would be ok. Little did I know,  the next morning she couldn’t get herself out of bed. I rushed the boys ,12 and 5 yrs old at the time , to school and we went to ER. There they ran scans and tests as her blood pressure dropped to 75/45 they diagnosed her with cellulitis and sent her via ambulance to nearest hospital for further evaluation.  Brandy was still cognizant of what was go on around her but I became very worried.  Once at the hospital she started acting oddly and panicky and it just became worse . The doctors told me they were gonna sedate her because they didn’t want the infection traveling to her brain.  She was intubated basically 48 hrs from our first visit.  At this point I didn’t know what to think , she was septic and scheduled for surgery to try to remove infection. This was the start of the scariest roller coaster ride of our lives.

I was told on several occasions following surgery to prepare for the worst.  I just couldn’t imagine the boys and I trying to live life without her. That just couldn’t happen! Brandy fought and kept fighting through 6 months in ICU where she developed ARDS along with several weeks of dialysis, numerous other infections,  blood transfusions etc. The list is too long to mention.  One of the biggest victories was her surviving ECMO for 87 days and was the first to actually walk while on the machine.  Fast forward to now.  Brandy’s lungs were very damaged during this sickness and now we await a double lung transplant.  She is  so strong and she tries so hard to stay positive through the struggles of needing oxygen 24/7. She has a family and two young boys who absolutely love her and we are believers! We believe God brought her through this for a reason and we will continue to live on the positive side of life. I feel like her story needs to be heard.

We have another journey staring us in the face with the transplant but we will do it. Keep us in your prayers as we will now try to find the finances to make this happen so my Brandy can have her life back so she can run and play and live the life she so dearly wants back with her boys and her family. Thank you for this foundation . Everyone needs to know how scary sepsis really is. 


   –  Coby Holtcamp 

A Q&A With an ARDS Survivor Who Never Gave Up!

  1. How did you realize you were sick? I am a US citizen, born and raised in Massachusetts. In 2006, I married my husband, Albert, and we live in the country of Bermuda. Albert was born and raised in Bermuda and with two elderly parents, it was just easier for us to live in Bermuda to take care of them since Al is an only child. In 2018, Al and I flew to Massachusetts for my 40th birthday at Tuscan Kitchen in Burlington, MA, and was staying at a hotel just around the corner from that restaurant. About a week after the party, I was diagnosed with pneumonia and was admitted to Lahey Clinic in Burlington. 12 hours later, I was rushed to ICU where I went into cardiac arrest for 11 minutes. After reviving me with the paddles, I was placed in a medically induced coma for 2 weeks. It was during those two weeks that I was diagnosed with ARDS.
  2. What was the toughest part about your illness? Recovery was relatively fast and normal. It seemed that every 12/24 hours I was turning over a new leaf. Within 3 weeks, I was at my mom’s home for rehab with a visiting nurse, PT and OT. Roughly 2 weeks later, my GP told me that I should be going to an out patient facility for PT because they have more equipment. However, the toughest part of this time was the guilt trip I put upon myself. I was apologizing for getting sick and putting my husband and family through hell. It was an emotional roller coaster ride. The other hardship was trying to sleep and getting on a sleep pattern. 
  3. How did the LEISHLine Financial Aid Grant help you? What was it used for? I was granted money for: utility bills, food, etc. I am so grateful for the money because my husband and I have been in financial hardship due to my hospital stay.
  4. What is your message to other survivors? Don’t give up…you can do this! Yes, you will loose some hair, your skin will be dry and itchy, it will be difficult to roll over in bed, difficult to walk and take showers, but guess what? This to shall pass.
  5. What is your message to people who don’t know the signs and symptoms of Sepsis, ARDS or TSS? For those who don’t have ARDS or TSS, educate yourself about the disease, make the patient comfortable AND meet or call your local state representative. Tell him or her about the disease. Push until your state representative spreads awareness of the disease, gets funding for the disease, etc. I did this in Massachusetts and my state representative is having a state ARDS awareness day.
  • Amy Rego, ARDS Survivor

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