Month: September 2024

Ella’s Sepsis Story

mendingthebrokenLeave a comment

If there’s one thing you read in its entirety today, please let it be this.

It been 2 year ago now since I knocked on death’s door! I went from being at a farm swap one day, to dying the next. It wasn’t a rare medical condition that brought me from being a healthy woman to a dying one either. It just hit hard, it hit fast and it would turn my life upside down.

In August of 2022 I had sepsis. And then in October of 2023 it came back. The goal of 2024 is to not get sepsis!

Before I had sepsis, I knew that sepsis was your body’s reaction to infection. I just thought old people got it or those with poor health. I didn’t know people like me(or that even my children) could get it so quickly and I didn’t know that sepsis had long term health affects. I was pretty uneducated about what sepsis was.

And so it’s become important to me to share what sepsis is, to tell you how to recognize signs of it and to tell you what post-sepsis syndrome is, in hopes that if you are sick you don’t wait to seek medical attention.

Sepsis is the body’s extreme response to an infection. If you don’t get treatment for it, it can lead to organ failure, tissue damage and death.

Symptoms of sepsis are not specific. They can vary from person to person. Initially my blood pressure was low and I had change in mental clarity… my mental state was the most drastic actually. So much so that the hospital ER staff believed I was high on narcotics and was treating me as such. It wasn’t until the hospital made contact with my husband and my best friend arrived at the ER that they were able to ensure the hospital I wasn’t a drug addict and that something else was wrong. And it was! I was finally given a urine drug screen and passed, but the long wait in the ER and being treated as just another addict had delayed much needed treatment and my sepsis turned into septic shock. My best friend saved my life that day.

I spiraled quickly… my blood pressure was low, my respiratory rates were high, I had a fever, I was hallucinating, I was shivering, I lost control of my bladder functions, I felt nauseous. I felt absolutely horrible.

Having sepsis led to my long admittance to the hospital. If I had stayed home, I wouldn’t have made it. If the hospital had delayed longer, I wouldn’t have made it. When people don’t get treatment, sepsis is a leading cause of death. Sepsis ranks higher than breast cancer, lung cancer, and heart attacks. It’s serious stuff. Sepsis can kill an affected person in as little as 12 hours and now that I’ve “been there, done that”, I can testify that this is absolutely true. I was feeling pretty deathly pretty rapidly.

Sepsis is treated with a strict antibiotic regimen. The underlying cause of sepsis or the original infection isn’t always known. It wasn’t ever clearly determined what caused me to get sick. They just have theories.

When I was discharged from the hospital I left knowing I’d be out of work for a bit, taking time to feel better, get rested, etc. But as the days grew to weeks, I wasn’t getting better. I found myself lost(literally), easily confused, at a loss for words, extremely tired, and unable to do tasks I once could. I would wake up and be disoriented to where I was. I’d sit in the house and not know what I was supposed to be doing. I’d try to do simple tasks like pickup dinner at the store and then completely forget why I was there. I would see people and they would act like we knew each other but I had no memory of them. Jason would tell me who they were but it’s like they never existed. I’d relearn people, names, and events. I would later find out that I had post-sepsis syndrome.

Post-sepsis syndrome affects 50% of sepsis survivors. Symptoms vary from psychological to physical effects. My short term memory was heavily impacted as was my cognitive functioning, similar to that of a traumatic brain injury. I had extreme fatigue and chest pains. My once normal heart now had tachycardia.

Post sepsis has required me to take medications just to stay awake during the day and to stimulate my brain. It’s changed my heart functioning and I take medications to keep it beating the right way. It’s made me forget some moments I desperately want to remember. It’s made simple memory tasks into harder ones. It’s made me rely on others to help do tasks I once could easily do. It’s enrolled me in rehab where we practiced skills to help my injured brain.

Now I do things on my speed and with tons of support from my husband and kids.

If you say “wow! I didn’t know!” It’s because I have the best support system someone could ask for. You don’t see me fail because of them. I succeed because they are behind me filling in the gaps.

I don’t share this because I want prayers or good vibes. I don’t want sympathy. On my two year almost dying anniversary, I want you to take sepsis seriously. Very seriously. I want you to go the doctor when you have an infection. I want you to take 5 mins today and to Google sepsis and read about all the signs and symptoms of sepsis.

I want you to be healthy. ❤️

April’s Sepsis Story

mendingthebrokenLeave a comment

I had a brainwave a couple of days ago and thought it would be really good to share as many stories of sepsis as possible on this platform. I might not have the widest reach in the world, but I have had people reading from across the world and sepsis is so serious that to me, it feels like a no-brainer. Awareness saves lives. I just want to thank every person who has agreed to share their story with me as it takes a lot to put yourself out there. Over the next couple of weeks I’ll be sharing various stories – please read and show some support to these amazing humans for wanting their story out there to hopefully help others!

On Saturday, September 2, 2017, I delivered a healthy baby boy and I was the happiest woman on earth. My husband and I had prayed for this child for years and this was going to be the start of our new adventure. What I did not know then was that this adventure was going to have a very rough start, one that still leaves me with nightmares.

On the day I was supposed to be discharged from the hospital I began to feel sick. I began to experience fever, chills, overall feeling of weakness, became short of breath, and felt like my heart was racing. I told my doctors all of my symptoms, but was quickly brushed off and was told that I was likely “just anxious about being a new mother.” Some tests were run and my White Blood Cell (WBC) count was higher than the previous tests, but again I was brushed off and told, “An elevated WBC count is normal after child birth.” When I was shivering from my fever, I was told to take a hot shower and one doctor even turned the thermostat in my room up to 80 degrees to stop the shivering. When my fever turned to sweats a nurse brought me a fan, again I was not taken seriously. Over the next few days I would continue to complain to doctors, but I continued to be ignored. One doctor even told me I was being “crazy” and needed to “stop”.

After doctors had given me enough Ibuprofen to make my fever go away for a while, they told me my new mom anxieties would likely go away when I got home and they sent me home with a prescription for anxiety medication. Not being a medical professional, or knowing what an elevated heart rate, fever, and elevated white blood cell count meant, I naively believed the doctors, that I would feel better once I got home.

Upon going home my symptoms did not improve. I continued to take the prescribed medications, including the anxiety medication prescribed by the doctor. My heart continued to race and I could not sleep or care for my newborn baby. Within about 36 hours of being released from the hospital, I couldn’t take it anymore and returned to the hospital first thing 9/08/17. On the way to the hospital I told my mother about the doctor telling me I was “acting crazy”, and was second guessing going back for fear that I would be told the same thing and sent home again. I am thankful my mom kept driving and insisted I get checked out. After a short stay in triage I was admitted into the hospital due to suspicions of an infection. Over the next 24 hours in Labor and Delivery my condition did not improve, I got progressively sicker and sicker as each hour passed. I went to the hospital to get better, instead I laid there getting worse. The OBGYN doctors had no real answers for my family. In the early morning hours of 9/09/17, I was finally taken to the ICU by a nurse from a different department who looked at my labs and knew something was extremely wrong. Had he not taken quick action, there is no doubt I would not have survived another 24 hours in the Labor and Delivery unit.

Over the next 2 weeks I would be treated for sepsis, endomitritis, septic shock, and all the other issues that go along with those, I.E.. kidney failure, shock liver, unstable blood pressure, pulmonary edema,  blood clots, and the list goes on. I don’t remember much from my 9 days in the ICU and my earliest memories of waking up from my medically induced coma are filled with nothing but confusion. Where was my son? Did I even have a baby? Was that a dream? Whose hand did I trace the letters “C-R-U-Z” in to when I had a tube in down my throat?

I would later learn that was my mother’s hand that I traced my son’s name in to and that was one of the very first things I did when I woke up. As I started to become more aware my family and doctors carefully tried to explain to me that I had developed an infection of an unknown source. That was the very first time that I had ever heard the word, “sepsis.”  At the time, I had no idea what septic shock even meant. I was very confused. I had no idea that I had literally just escaped death. I had no idea that during my time in ICU the doctors told my family to call those closest to me to say their goodbyes.  I had no idea that my husband had to think about how he was going to raise his son without a mother. I had no idea that my son came so close to growing up without his mama. I had no idea what I had survived had killed so many others.

My husband recently visited another hospital in our area and noticed several posters about the symptoms of sepsis and we all talk about how if we had seen that information what might have been different. I constantly find myself saying, “I wish I had known about sepsis.”

Although my story of being a new mom got off to a rough start, today I am a happy, healthy, mama to a silly, smart, and sometimes a bit of a wild child boy. On the days when I get upset about missing out on the first month of dirty diapers, midnight feedings, and sweet baby cuddles I am reminded that not all who experience sepsis are as lucky as me. Now more than ever, I hear stories about people who have lost limbs, had severe long-term problems, and even died from sepsis.  Throughout my one month stay in the hospital I constantly heard from medical professionals how “rare” sepsis is, but as I have done more research I am realizing sepsis really isn’t rare at all.

As I continue to share my story  I find people just don’t know what sepsis is. I try to stress to everyone that while my sepsis experience was related to child birth, sepsis can affect anyone from something as small as a cut on your finger.

My goal in sharing my story is to help educate others about the symptoms of sepsis and the importance of advocating for your own health or the health of those around you.  Because sepsis can affect anyone I want to help raise awareness across all audiences, but my experience has led me to have a special place in my heart for mothers-to-be. I  I hope that more OBGYN teams will educate themselves on sepsis so that no family has to go through what mine did and even more so, I hope that pregnant women learn the symptoms and stand their ground if they feel that something is not right.

My Sepsis Story

mendingthebrokenLeave a comment

In January this year I had sepsis and it was the most terrifying experience of my life. It wasn’t the first time I’ve had it but it was the worst. As people with Fowler’s Syndrome are at higher risk of infections due to catheters, it follows that we are also at higher risk of developing sepsis. I’m really fortunate that because I was already in hospital at the time, it was caught early because things could have been much worse.

On New Years Eve I started to feel incredibly unwell. At first I thought it might just be the start of a migraine because I’m often sick and more exhausted than normal when I feel one coming on. But when the nurse in my bay came to do my observations I could tell something was seriously wrong. She immediately went to call a doctor and within 5 minutes my bed was surrounded.

My blood pressure had absolutely tanked (my notes, which I later read, said that it was 61/30), my temperature was 41°c and despite being in bed my heart rate was 149bpm. My score on the National Early Warning Signs system was 12. They took bloods straight away, including blood cultures, and put me on continuous fluids. And when they looked at what my lactate level was they knew that they were probably dealing with septic shock. A normal blood lactate level is less than 2.0mmol/L (some sources say that it’s less than 1.0mmol/L) and mine had jumped to 23. My entire body felt like it was on fire and I was beginning to feel quite disorientated.

Whilst they waited for my blood cultures to come back I was put on 3 different IV antibiotics until they knew what one was most appropriate. The critical care outreach team came to see me and discussions were had about whether or not I needed to be moved to intensive care. I wasn’t tolerating my feed at all so it had to be stopped for a few days, and when I woke up on New Years Day, I had the worst headache I’ve ever experienced. If I thought the headache that was starting the day before was bad, it was nothing in comparison to this.

I genuinely felt like my head was going to explode. I couldn’t move at all – I couldn’t sit up, turn from side to side, and the bright hospital lights just made everything worse. This made the medics suspect that I might have meningitis, but once my blood cultures came back, they realised that it was ‘just’ being in septic shock. I’m pretty glad that I didn’t have to have a lumbar puncture – I was hours away from that being carried out.

The continuous IV fluids were carried on until my blood pressure had stabilised a little – it took 4 days before it was normal enough that I was allowed to stand up and walk to the toilet (that was about 5 steps in front of my bed), and the same before my temperature dropped below 40°C. The critical care outreach team came to see me 4-6 times a day whilst my NEWS was still so high.

I don’t think I’ve ever felt so unwell in my life. All I asked the doctors for the first few days was ‘am I going to die?’ because I really did feel like that was the likely outcome. And now, being a science nerd who likes to read research papers for fun, it’s made things even clearer in terms of how unwell I was. In all honesty, the severity of my symptoms was probably also, in part, due to malnutrition and having experienced refeeding syndrome the week prior to going into septic shock. My body was struggling a lot.

It took a good 4 weeks before I started to feel semi-human again (although I still wasn’t at my baseline) and what did my body reward me with? Sepsis take two. I wasn’t quite as unwell the second time around, which I’m very grateful for, but it’s still taken it out of me. I’m still not back at baseline, even 6 months later, and I’m anticipating a long road ahead of me, but I know I’m incredibly lucky to be in the position I am, because things could have been very different.

All my love,

Anna x

The Misconception about Hair Loss

mendingthebrokenLeave a comment

Hair loss is a hugely sensitive issue that many people face for so many different reasons. Sadly, the stereotype and first assumption that people seem to jump to is that if someone has lost their hair (particularly if they are female), is that it must be due to chemotherapy. Whilst this is an assumption that isn’t made in a horrible way, and people usually ask out of a sense of compassion, it’s hard facing the questions time and time again. I wanted to write this post because I’ve lost count of the number of times I’ve been asked if I have cancer over the last 6 or so months (since my hair started to fall out again), and I feel it’s important to raise awareness of other conditions as well. 

I have lost huge amounts of my hair in the last 6 months due to having sepsis.

So, what are some of the common causes? 

  1. Alopecia Areata: this is probably the most well-known cause of non-cancer related hair loss. It is an autoimmune condition that causes the immune system to attack hair follicles, leading to hair loss in patches. For some people, it can lead to total hair loss on the scalp, or even the entire body.  
  1. Genetics: male or female pattern baldness is hereditary. It can start as early as your 20’s and gradually lead to significant hair thinning. 
  1. Hormonal changes: hormones play a huge role in hair growth. Conditions like Polycystic Ovary Syndrome (which is coincidentally a condition that affects a vast number of those with Fowler’s Syndrome), thyroid disorders or the menopause can lead to hair loss or thinning. 
  1. Stress and trauma: this could be anything from major surgery or illness, to the loss of a loved one. Stress-related hair loss usually happens a few months after the triggering event. 
  1. Nutritional deficiency: if your diet is lacking essential nutrients like iron, vitamin D and protein, then this can contribute to hair loss. 
  1. Medications: not just chemotherapy – many medications can have hair loss as a side effect. These include blood thinners, many antidepressants, birth control and treatments for things like acne or arthritis. 
  1. Trichotillomania: this is a psychological condition where someone has an irresistible urge to pull out their hair, leading to noticeable bald spots. It is a form of compulsive behaviour and often needs professional help to overcome. 

When people assume that hair loss equals chemotherapy and/or cancer (chemotherapy is also used for other conditions), it means that a vast number of other conditions are also being overlooked. And when people who have hair loss are repeatedly asked if they have cancer, it’s not only invasive, it also reminds them that there is something visibly different about them.  

I, personally, have lost huge amounts of my hair this year due to having had Sepsis. The assumption is that because my body was so focused on fighting the infection, it took its energy away from bodily functions that it didn’t deem essential. I don’t hugely mind people knowing that I’ve lost my hair – I have, after all, posted photos clearly showing my hair loss. However, being totally transparent – I do find it hard when I go out without a wig because people have a tendency to point and stare at my head. When children ask questions I genuinely don’t mind answering them because I’d much rather educate others about why my appearance is the way it is, but it does take an emotional toll. 

Next time you see someone dealing with hair loss, please try to resist the urge to jump to conclusions. Rather, offer them the compassion and respect that they deserve. 

A Silent Struggle: Understanding Fowler’s Syndrome

mendingthebrokenLeave a comment

When we think about bladder health and urological conditions, the most common things that come to mind are things like UTI’s or incontinence. But there’s a much rarer condition that affects women (or those afab) – one that is often misunderstood, misdiagnosed, and far too frequently completely overlooked – Fowler’s Syndrome. Despite being something that is fairly unknown, Fowler’s can have a huge impact on quality of life, leading to physical pain, emotional distress and isolation. 

What is Fowler’s Syndrome? 

Fowler’s Syndrome is a urological condition that is characterised by the inability to pass urine normally. This is because the urethral sphincter (the muscle that controls the release of urine from the bladder) doesn’t relax like it should. It is a condition that mainly affects young women – especially those in their 20’s and 30’s. The exact cause is still unknown as well, and this only adds to the complexity and challenges of diagnosing and treating the condition. 

The main symptom is urinary retention – the inability to empty the bladder properly. This is a spectrum with some people having mild difficulty in emptying their bladder, to other’s who are completely unable to empty their bladder without medical intervention. Many who have the condition will have to use a catheter to empty their bladder – either one that is permanently in situ, or by using intermittent catheter’s. Speaking from experience, both of these can be physically uncomfortable (and at times painful) and emotionally distressing. 

Other symptoms can include: 

  • Chronic pelvic pain  
  • Recurrent UTI infections (the incomplete emptying of the bladder, or the presence of a catheter, leads to a higher risk of infections) 
  • Lack of feeling in the bladder (I personally have next to no bladder sensation, even when I am totally at capacity) 
  • Difficulty starting to urinate (even when the urge is strong)  
  • A weak or slow urine stream 

Diagnosing Fowler’s Syndrome is challenging. Because it is so rare, many healthcare professionals are not familiar with it and this can lead to misdiagnosis or delayed diagnosis. Women with the condition undergo multiple tests, including urodynamic testing which assess how well the bladder and urethra are functioning. One of the key symptoms (that is diagnosed by EMG – the gold standard test) is abnormally high urethral sphincter pressure, which prevents normal bladder function. 

Living with Fowler’s Syndrome 

Living with Fowler’s is not just a physical challenge, but an emotional one too. The daily discomfort and pain, needing a catheter, and frequent hospital and doctors appointments have a huge impact on mental health. Many women diagnosed with Fowler’s struggle with anxiety and depression as they navigate a condition that is not well understood, even by medical professionals (the consultant I was under after my diagnosis had never heard of Fowler’s and I was the first patient in the hospital to be experiencing the condition – it’s kind of scary looking back!) 

There is also the challenge of explaining what Fowler’s Syndrome is to others. Because of its rarity, many friends, family, and doctors may not grasp what the person is going through. Those with the condition often have to become their own advocates, pushing for proper diagnosis and treatment options. I’m so fortunate to have the most amazing, understanding friends and family around me – I wouldn’t have gotten through the last 5 years without them in my corner. 

Treatment Options 

There is no cure for Fowler’s, but there are treatments that can help people manage the symptoms. The most common one is using a catheter to empty the bladder. As previously mentioned, this can either be through a catheter that is permanently in situ, or one that is used intermittently.  

Another option is sacral neuromodulation – this involves implanting a device to stimulate the nerves controlling the bladder. This has shown promise in reducing symptoms for some, but it’s not suitable and does come with risks. It is thought to be less effective for those who are in complete urine retention. 

Medications that relax the urethral sphincter or address underlying issues like chronic pain or mental health struggles may also be part of the treatment plan. However, because the symptoms are so individualistic and complex, finding the right combination of medications can take a lot of time. 

Finally, there are surgical options but these are both huge undertakings. A mitrofanoff is a catheterisable channel that is on the patient’s abdomen that they then pass a catheter through to empty the bladder (or neo-bladder if one is created). A urostomy is where the urinary tract is diverted completely so urine drains from the kidneys to a stoma bag. 

Why awareness matters 

Fowler’s is rare, but for those affected it is a life-changing condition that definitely deserves more attention. Increased awareness can lead to earlier diagnosis, better treatment options and more research into potential treatment options and underlying causes. 

Women with Fowler’s need to know they are not alone. They deserve understanding, support, and compassionate care. And I won’t shut up until everyone affected feels understood and supported through their journey. 

All my love,

Anna x

Understanding the Battle and Aftermath of Sepsis

mendingthebrokenLeave a comment

Sepsis is the body’s extreme response to an infection. It isn’t the infection itself, but the reaction of the body that causes the problem. It’s a medical emergency that needs immediate attention, but for so many people it goes unrecognised until it’s too late. When your immune system goes into overdrive it can lead to tissue damage, organ failure and, if not treated quickly enough, death. 

Imagine waking up one day feeling a little off. Maybe you think it’s the start of a cold or exhaustion because you’ve had a busy week. But as the day goes on, something starts to feel incredibly wrong. Your heart races, your breath becomes quicker, and all of a sudden, you’re hit with an overwhelming sense of confusion and fatigue. This isn’t just a simple illness – this is sepsis, something that can spiral out of control with alarming speed. 

Knowing what to look out for is extremely important – sepsis is a medical emergency!

How might someone experience Sepsis and what is Post-Sepsis Syndrome? 

For someone who has sepsis, the experience is terrifying and disorienting. It’s not just the physical symptoms you experience, but the mental disorientation and confusion, as well as an impending sense of doom. Often people are unable to think clearly, don’t know where they are or what’s happening, and they sometimes describe feeling like their body is shutting down. 

And, even when someone is doing better, the journey isn’t over. For around 50% of people who survive sepsis they go on to develop Post-Sepsis Syndrome. This is something that can last for months, or even years after the initial infection. It is a collection of both physical and psychological symptoms that can have a huge impact on someone’s quality of life.  

Physically someone might struggle with: fatigue, chronic pain, muscle weakness, organ damage, poor appetite, hair loss and shortness of breath. Psychologically the symptoms can include: hallucinations, panic attacks, flashbacks, anxiety, depression, insomnia, PTSD, nightmares and difficulty concentrating. 

The risk of having PSS is higher for those who are either admitted to intensive care or are under an intensive care outreach team, and who are in hospital for a prolonged period of time. It is more likely that older survivors who have severe sepsis are likely to have worse cognitive and physical functioning post-sepsis. But it’s not exclusive to older adults – up to 34% of children are not back to their baseline for at least 28 days post hospitalisation.  

Why is raising awareness important? 

Sepsis is incredibly common – a lot more common that people may think. There are around 11 million deaths a year (with 48,000 people in the UK every year) and roughly 49 million cases of sepsis globally. It is thought to have a 20.3% death rate (according to a 2018 study) and, in the UK, nearly 80,000 people a year will suffer life changing after-effects. It also kills more than breast, bowel and prostate cancer combined. 

However, despite being so common, and serious, people often underestimate the seriousness and prevalence of the condition. It’s very easy to think ‘I’m healthy, it won’t happen to me’, but the reality is that it can impact any one at any given time. I’m a strong believer that everyone should be educated on the symptoms of sepsis because delayed diagnosis leads to far worse outcomes. By raising awareness about sepsis, and PSS, it enables people to reach out for treatment sooner, and helps others understand what life post-sepsis can be like. The sense of isolation can be devastating, but there are people out there who do understand and who do want to help. 

Sepsis is a life-changing condition that doesn’t end when you leave the hospital. So, spread the word about sepsis wherever you can. Let’s try to make a difference in the lives of sepsis-survivors, their friends, families and everyone who may experience sepsis in the future. 

All my love,

Anna x