CHAPTER 23. A Life Changed
Hold My Hand: A Journey Back to Life
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As always - thank you for reading or listening!
YOU’LL NEVER BE THE SAME AGAIN
Even if you survive NF, your life will never be the same again. It will be irrevocable changed. These infections leave many thousands of people all around the world with life changing consequences – be they physical and/or mental.
NF wounds can be longer and larger than you can almost imagine. If you measured mine, then they totaled maybe 50 to 60 centimeters (approx. 24 inches) – relatively small compared to what some other NF patients wake up to. But still it felt like it took forever for my wounds to heal - the three months it took was, by NF standards, pretty fast. Other people have wounds that take years to heal or never fully heal in their lifetime.
And then there are skin grafts which can be essential to close some of those large wounds that have no chance of closing without additional intervention. I was told initially that I would need a skin graft with the donor skin taken from my right thigh to be transferred over to my left inner thigh. I was incredibly fortunate that in the end the plastic surgeons worked their magic to close my wounds without a graft. But it was a near miss.
As many as 60% of NF patients need a skin graft (14). Skin grafts don’t act like normal skin, and they are never attached to your body in the same way as they were in their original location. They still take ages to heal and up to two years to mature. You now have two wounds to heal when your body was having a hard enough time with one.
Skin grafts get dry. They don’t sweat. They can be more sensitive to pain even after they’ve healed. They can look discolored, patchy or uneven. They never have the same sensation when you touch them as normal skin. They can break down especially when they’re still new. And over time they can build up scar tissue around the edges. My heart goes out to all the NF patients who had no other option and had to have a skin graft.
Then there’s all the tissue that has been removed in the surgeries and the nerves that have been cut. In some instances that leaves the NF patient with areas of skin with little or no sensation. I know from experience that some of the sensation will come back over the years, but it will never be the same.
Then there’s the unexplained pain in the affected area – burning sensations, tingling or shooting pains, and sometimes unbearable itching (18). For some patient’s reconstructive surgery or scar revision surgeries may be required. I only had two of these procedures, but for other NF patients these surgeries can go on over many years and the number of them can get into double digits (18).
Other NF patients have had limbs amputated to stop the spread of the infection and deal with the destruction of tissue. The estimates of how many NF patients lose a limb vary widely – again because every infection story is unique. In a Danish study this affected only 7% of NF patients (8), but in other studies it’s been much higher – for example it was almost 20% of patients in a German study (14).
Patients that have been in septic shock may experience some level of organ failure. For some, like me, we’re lucky that the shock reversal treatments were implemented quickly enough, along with all the other treatments, to spare us from permanent damage. But others are not so lucky and have to deal with conditions such as kidney or liver failure that can require transplant surgery if they are fortunate enough to find a donor.
Of course, all these things also affect your overall quality of life. Things you used to be able to do may no longer be possible. Or it may take many months or even years to be able to do them again.
A recent study found that only 50% of NF patients reported making a ‘full recovery’ two years after they were discharged from intensive care (1). While you’re in the acute stages of the illness you receive state-of the-art treatment and care, but as time passes rehabilitation support becomes less readily available and less patient-centric. In many cases long-term follow-up simply isn’t available. It’s left up to you to fight your way back. And that’s a heavy weight to carry when you’ve already been hit so damn hard.
NF is very different to other diseases when it comes to medical specialty ownership which also affects the follow up that you can expect – at least here in Denmark. Cancer patients are supported by well-established multidisciplinary teams. Professionals that wrap around each patient, for the long run, until they are hopefully cured. But just as I found out, once you are no longer acutely ill and your NF wounds have healed there is often nobody left to hold your hand from the medical perspective. It’s up to you.
If that’s not enough you may also not live for as long after the infection as if you hadn’t had it. As I mentioned in an earlier chapter data from a US study suggested that median survival post NF may be just ten years (19). They also found an increased risk of dying from other infections compared to the wider population - such as pneumonia, cholecystitis (an infection of the gall bladder), urinary tract infections and sepsis (19). But the data is confounded by so many factors, including the unique nature of every NF case and other health factors. So maybe it’s right or maybe it’s not.
And that’s just the physical stuff. On top there are the mental scars of living through this type of often highly traumatic experience. There’s no question in my mind, and the research data supports it, that the psychological recovery takes longer than the physical recovery (1). NF patients are rarely offered psychological counselling and a patient in one study said it was much easier to get treatment for anger management than the psychological impact of having been through NF (1).
Once again you must take on the challenge to get the support that you need and, in some instances, you also have no option but to pay for therapy yourself, if you even can. I was relieved to find out that I wasn’t the only patient to store up morphine to end it all if it all became too much (1).
At least one study has suggested that a return visit(s) to the intensive care unit, offering both physical and psychological assessment and other support, can help NF patients in their recovery (1). I was offered a visit to the unit where I was treated, but the purpose of the visit wasn’t clear and in the end I cancelled a couple of days beforehand.
I can’t blame anyone for that as at the time when I took the phone call about the invite I was not long out of hospital, my memory was patchy, and I was still easily confused. I said yes to the visit initially, but when it came to it, I just couldn’t face returning to that environment less than two months after I was discharged. I wish someone had provided something in writing about what the visit was for, what I could have expected, and what was in it for me.
And then of course it’s not just you that’s been affected by the experience – you have to think of those around you - your family and other loved ones – and what they’ve been through. They need to recover too. And will likely also be affected forever by the experience.
When you get sick with NF the last thing on your mind is when you’ll be able to go back to work. However, for many people that question arises quickly as they start to recover because of the financial consequences of being away from work for an extended period.
Data suggests that on average it takes an NF survivor almost eight months before they can return to work, with that period ranging from between two months to two years (13). And that’s IF you can return at all. Most employers simply don’t understand this disease, it’s severity, or the long-term impact (18).
NF RESEARCH
I’ve worked in clinical research for almost thirty years and my roles have touched a variety of diseases, medical conditions, and the development of a wide range of new medicines. Clinical trials are a type of research study that evaluates novel tests and treatments and their effects on human health outcomes.
For example, they may test a potential new medicine or novel combinations of medicines to see if they work. These trials may also evaluate the effectiveness of medical devices (machines) that may help things like wound healing. And they may also test new markers – for example in your blood - that may help diagnose a disease or measure its progress.
Clinicaltrials.gov is an online database of clinical trials that was established by the National Institute of Health (NIH) as a central global resource to provide current information on clinical trials to members of the public and health providers. Anyone can type in the web address and access the information.
As of November 2024, there were just 25 entries (clinical trials) in the database for NF – of those 16 were completed/terminated, five had an ‘unknown’ status and just four were active. Those numbers are tiny. Compare them to the results when you search for ‘lung cancer’ clinical trials and you’ll find 12,543 entries i.e. trials.
There’s a similar pattern if you look at the number of scientific papers published on NF via PubMed – another online database set up by the NIH that is publicly accessible. The search term of NF produces a little over 6,000 papers, with 316 published in 2023. That number has increased somewhat over time as if we look back twenty years to 2003 just 116 papers were published on NF that year. Again let’s compare to lung cancer and you’ll find over 450,000 papers, of which 26,000 were published in 2023 alone.
Why is there comparatively little research being done in NF? I believe that there are a number of reasons. NF is a relatively rare disease with a treatment protocol of surgery, antibiotics and intensive care support. Of course there is research into novel antibiotics, but that is more generalized and not specific to NF. Plus, the pharmaceutical companies have no big blockbuster drug for NF that they can develop that will make them gazillions of dollars.
Then add to that the difficulty in doing randomized trials to get more conclusive results – these are studies in which the participants are divided by chance into separate groups that compare different treatments or other interventions. The ‘chance’ element means that the groups will be similar and so the effects of the treatments they receive can be compared more fairly.
But in such a fast-moving, life-threatening situation there are also ethical considerations of doing such studies plus extremely high levels of variation in the patients and their individual situations - diversity of disease progress, diverse nature of patients’ comorbidities, varying treatment regimes, different lengths of time to diagnosis and from diagnosis to first surgery etc.
There is also the challenge that some NF patients are simply too distressed and traumatized to participate in any research, talk about their experience, or complete any questionnaires about their recovery (14).
The biggest possible gamechanger in terms of NF treatment would be not to have to treat it at all and instead have a vaccine against the bacteria that cause these awful invasive infections.
There is a long history of work to try to develop a vaccine specifically again Streptococcus pyogenes – the bacteria that caused my sickness and that is the most common culprit in NF (20). Initial interest in the early 20th century focused on a vaccine as this particular bacterium also causes other illnesses such as scarlet fever and rheumatic fever. However, as the incidence (and seriousness) of those diseases declined the interest in developing a vaccine also waned.
Since 2016 interest has been revived and bolstered by World Health Organisation (WHO) support. Research is ongoing. At least one team have started work on a Group A Streptococci vaccine here in Denmark and they aim to have a vaccine ready to start clinical trials by 2027 (21).
I have real hope that it could save others from going through what I did.
FINDING A COMMUNITY
The nature of NF is that many patients feel very much alone. Finding a community that you can relate to is so important during the recovery process and yet it’s incredibly hard. It’s very unlikely that you’ll happen to trip over another NF patient in daily life – I’ve only talked to one person who happened to know someone else (on the other side of the world) who had NF.
There are a relatively small number of Facebook groups. The largest global group has around 2000 members (composed of both survivors and their loved ones) and spends more time wishing people happy birthday or happy re-birthday than sharing anything useful. Then there are smaller local or country-specific groups like the one for Danish patients with less than 175 members and zero posts in the past eight months.
Even if you can find another NF patient it’s often difficult to relate as everyone’s experience is so unique and it can feel as if they have had a totally different illness. Rarely have comments in any of these groups resonated for me. But occasionally something useful does pop up. I remember that the first clue I had that my hair falling out was a direct result of my illness came from a Facebook post where someone else was asking about a similar issue. I was flooded with a sense of relief that my hair loss was a common experience and then I went off to good old Google to find out more.
Gradually I have become addicted to listening to memoirs. I don’t know why listening rather than reading, but somehow hearing the persons own voice creates a much stronger connection to their story than just seeing the words on a page. But it must be the author themselves narrating the book – anyone else simply doesn’t work. The speed at which they speak, the tone and timbre of their voice, conveys their feelings and the emotions attached to those words. It’s as if you can absorb the story in 3D instead of 1D.
I’m particularly partial as you may be able to guess, to books that tell stories related to some kind of medical diagnosis and recovery (or not) or near-death experience. I relate to the struggle and fighting back from the brink. The dramatic alterations to your personal perspective on life. It’s all about just how delicate the balance between life and death really is …
I thought that my need to listen to these books was related to learning about how other people had written their memoirs and to me working out how I wanted to write this book. However, its only writing this chapter of the book that the penny has dropped, and I’ve realized that this was my way of finding my tribe and finding people whose experience I could relate to so that I felt less unique and less alone.
I’ve concluded that it wasn’t actually necessary to confine myself to looking for my community in such literal places as with other NF patients. Surviving NF is a traumatic life event, but there are many different types of those. All of which turn your life upside down. And there are more commonalities across them than you may think. These days I keep a more open mind about whose story will resonate for me and also who will connect with mine.
OTHER RESOURCES FOR NECROTISING FASCIITIS
National Organization for Rare Disease (NORD) – NF Page
U.S Centers for Disease Control and Prevention – About NF Page
REFERENCES
Patient and family experience 2 years after necrotizing soft-tissue infection: A longitudinal qualitative investigation – J Adv Nurs 2023 – Ingrid Egerod et al.
Prognostic Aspects, Survival Rate, and Predisposing Risk Factors in Patients with Fourniers’ Gangrene and Necrotizing Soft Tissue Infections: Evaluation of Clinical Outcome of 55 Patients – Urol Int 2012 – A. Martinschek et al.
Emergent Management of Necrotizing Soft-Tissue Infections – Medscape 2024 – Brit J Long
Bacteria – National Human Genome Research Institute
Invasive Group A Streptococcal Disease – Drugs 2012 – Andrew C. Steer et al.
What we know so far about strep A child deaths in the UK – New Scientist - Michael Le Page – 07 December 2022
Signs, symptoms and diagnosis of necrotizing fasciitis experienced by survivors and family: a qualitative Nordic multi-center study – BMS Inf Dis 2018 – Annette Erichsen Andersson et al.
Incidence, comorbidity and mortality in patients with necrotising soft-tissue infections, 2005-2018: a Danish nationwide register-based cohort study - BMJ 2020 – Morten Hedetoft et al.
Severe Strep Infections Rebound After Pandemic Lull – Medscape 2023 – Brian Owens
Flesh-eating disease linked to gene differences – New Scientist - Emma Young – 17 November 2002
Impact of severe necrotizing fasciitis on quality of life in the Netherlands – EJTES 2022 – Sander F. L. van Stigt et al.
Necrotizing fasciitis and the midterm outcomes after survival – SAGE Open Medicine 2019 – Christiane Kruppa et al.
Key pathways and genes that are altered during treatment with hyperbaric oxygen in patients with sepsis due to necrotising soft tissue infection (HBOmic study) – European Journal of Medical Research 2023 – Julie Vinkel et al.
The history and development of hyperbaric oxygenation (HBO) in thermal burn injury – medicina 2021 – Christian Smolle et al.
Hyperbaric oxygen treatment in the management of necrotising soft-tissue infections: results from a Danish nationwide registry study – BMJ 2023 – Morten Hedetoft et al.
The impact of necrotizing soft tissue infections on the lives of survivors: a qualitative study – QoLR 2023 – Jaco Suijker et al.
Long-term outcomes of patients with necrotizing fasciitis – J Burn Care Res 2010 – Timothy D Light et al.
A controlled human infection model of Streptococcus pyogenes pharyngitis (CHIVAS-M75): an observational, dose-finding study – The Lancet Microbe 2021 -. Joshua Osowicki et al.
If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.
If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.
Thank you!
If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.
Next THURSDAY I’ll share the final chapter of my ‘book in parts’ - Hold My Hand: A Journey Back to Life. I can’t believe we’re almost at THE END. Then again there is no ‘end’ as my journey continues…
Image caption: morning meditation walking Evie.
Such a lonely and painful experience to go through, Jacqui, and you've described so well here the "aftershocks". I do hope the research into the vaccine brings results.
Thank you once again for your story. I so fully appreciate the need to connect with people who have been through something similar. Even though I didn’t have NF and my injury has been smaller it has been so familiar and very beneficial for me to read. It has been a book of recognition to me even though it was at a different scale. And yes I did need the skin transplant and it is no picnic! I look forward to your final chapter and may need to re-read the first chapters as I was reading these whilst being in the hospital :)