Sepsis - a timely reminder

[bennevisplace]

“The paramedics were reluctant to take me in,” he said. “They thought I should go and see my GP. I could have gone back to sleep. And I would have died I suppose. After a bit of remonstration they agreed [to take me]. No doubt at all Kati saved my life. If we had got there two hours later I would have been dead.”

After going into septic shock, the MP was put into an induced coma that would last for 16 days.

He added: “I was in the triage area and I was all perfectly OK and lucid, and then I went literally a bright blue as the sepsis shock started.”

Those are the words of Craig McKinlay, MP, who returned to work in the House of Commons today, with newly fitted prosthetic hands and feet theguardian.com/politics/ar...

My search on HealthUnlocked just found over 1,500 posts featuring the word "sepsis", 81 in our CLL support group including entries by members who have experienced neutropenic sepsis, often while undergoing treatment for their CLL, or have received advice or are concerned about it.

I won't forget my three emergency hospital admissions, during/ just after treatment when my neutrophil count was well below 1 and my temperature had climbed to 38 C. Unlike Craig McKinley, I didn't have to fight for a bed. "Come down right now" they said, and I was admitted on arrival (once at 2 am) and on IV antibiotics within an hour. I didn't get sepsis, and I doubt I even had a bacterial infection that might have led to it. The medical staff nevertheless wouldn't discharge me before my vital signs had been normal for a day and a night.

Sepsis can hit anyone. Don't assume that because you're on watch-and-wait you can discount the possibility that an infection - which might start with an innocent looking cut or a sore throat - could end up with your life in the balance. First-hand accounts agree: when it happens it happens FAST, e.g. healthunlocked.com/cllsuppo... Get to know the signs of progression, because TIME IS OF THE ESSENCE.

The early stage of sepsis may be easily missed, so IF YOU HAVE OR SUSPECT AN INFECTION, AND BEGIN TO FEEL MORE UNWELL, SEEK ASSISTANCE.

If this makes for uncomfortable reading, sorry to bother you.

DON'T BE SCARED, BE PREPARED.

The emergency number 911 applies to most of North and Central America.

The equivalent number in the UK is 111, or your specialist CLL team's emergency number.

In this context, a bit of good news: A clinical trial has shown that Acetaminophen reduces the risk of sepsis patients experiencing organ damage or developing acute respiratory distress syndrome insideprecisionmedicine.com...

[Sushibruno]

thank you for this info, even though it’sa very scary thing, is good to be informed.

[SofiaDeo]

This is so true. I remember insisting taking John, a "normal immunity" but elderly neighbor to the ER with a toe wound that looked awful. According to him, he saw his doctor earlier that day & doc thought it was OK. When I asked John "was it bright red like this earlier today?" he took a good look & said "no, I don't think so."

I actually saw the bright red line of infection crawling up his leg as we sat in the ER cubby waiting for a doc. I ran out of there & got someone. John was hospitalized with a MRSA, fortunately he never went to sepsis.

This experience prompted me a decade or so later to take cell phone pictures of skin lesions after the CLL diagnosis. For a number of years, they simply got deleted some weeks or months after.

One time the week before Christmas I accidently knocked a small scab off my right lower shin. I was always bruising & dinging myself post diagnosis. The next AM that area seemed red/irritated, so I took a pic. Later that day, I thought the area was larger. A second pic confirmed it. I called the doc & arranged to be seen the next AM, it was already something like 4pm. I circled the area with a marker.

Next AM, it was definitely larger & had a pustule. The doc cultured it, I took that sample to the local university hospital lab that would run MIC's instead of the basic culture & sensitivity the doctor's lab (Labcorp) could do. It came back MRSA, and we knew it was sensitive to the 2 drugs I was on.

My doc knew I had some experience with this bug, would follow instructions to really push fluids equivalent to being on an IV, and would know "when" to call if things worsened. So I didn't have to get hospitalized. Especially Christmas week, I would have hated that.

Better to go, waste some time & perhaps some money in fees, than have a potential serious problem.

FWIW, I had some problems with low grade re-infection; community acquired MRSA is difficult to eradicate in the environment. My partner had had a MRSA on his thigh, a hair follicle infection, a few years previously. This is what prompted me to investigate the room sterilization devices I currently use. I spent months & months cleaning everything, I still kept getting low grade infections. Bleach baths, washing/disinfecting everything with Hibiclens.

I do think the sanitizer tech helped me get over the last hurdle. I've finally tested "clear" of it, no longer a carrier, thank goodness.

[Newdawn Administrator]

Thanks Ben. I’ve just lost my original response which was very comprehensive but this subject is so important that I’m going to do another brief reply (through gritted teeth).

I’ve had sepsis twice, both early in my CLL journey. Both times my labs were decent and I wasn’t needing treatment. However, I did already have hypogammaglobulinaemia and found to have diabetes after the first episode. Diabetes really ups the risk! I left my GP surgery one mid afternoon clutching 3 days supply of antibiotics for a suspected UTI but by early evening I knew I was in trouble. My personal danger indicators are an increasing pulse and dropping b/p. It’s important to remember that sepsis has 3 stages and the early stage can be easier to miss. I didn’t have mental confusion but having seen both my parents die following sepsis, I’ve experienced septic shock and it’s very extreme.

If you have or suspect an infection and begin to feel more unwell, seek assistance. Sepsis is the body’s extreme and unnatural reaction to infection when the immune system goes into overdrive. Some people appear to be more predisposed to it. Always mention our greater risk of sepsis and more unregulated immune response at hospital and clearly ask them to check.

I’m on constant watch at the moment with this pneumonia and the home obs trolley is due around about now 😉

I saw the MP, Craig McKinley in the Commons this morning and thought he was very inspirational. I hope his terrible experience raises governmental awareness and also improves access to better prosthetics.

Newdawn

[Walkingtall62 in reply to Newdawn]

Didn’t realise you were in hospital. Thinking of you. Take care

[Newdawn Administrator in reply to Walkingtall62]

I’m not in hospital. The ‘obs trolley’ was a tongue in cheek reference to my home checks. I’ll edit it to avoid confusion.

Newdawn

[Walkingtall62 in reply to Newdawn]

I have to say I did wonder if it was time for family rounds but didn’t want to say anything inappropriate🫣. Still thinking of you

[bennevisplace in reply to Newdawn]

Phew. Your sepsis story is also very sobering Newdawn. If you don't mind, I'll nick a couple of your lines to add to the main message in my post.

[Newdawn Administrator in reply to bennevisplace]

Feel free Ben 😊

Newdawn

[Poodle2]

Very true...what a story...when I had neutropenic sepsis, it was the first time on this journey I was really scared. I remember how petrified I was when I started to get the typical "sepsis" rash an hour after I had my first dose of IV antibiotics. What would have happened if I didn't get them on time...

[mrsjsmith in reply to Poodle2]

Those ‘ what if ‘ episodes are scary. X

[mrsjsmith]

Thank you so much for this post. I do admit to being a crybaby but seeing the footage of that MP in the house today had me crying.

Perhaps anyone in the UK can check if their hospital has signed up to Martha’s Law and if not ask why not !

Colette

[Sepsur]

I had not an inclining how ill I was. A&E nurse stabilised me 16hrs after first experiencing MOF - lucky doesn’t even scratch the surface. 8weeks later I woke up.

[bennevisplace in reply to Sepsur]

Scary stuff, all before your CLL diagnosis (from your bio). You're a survivor that's for sure.

[Sepsur in reply to bennevisplace]

Diagnosed with CLL whilst still in a coma - the diagnosis was kept from me until day 78 in ICU when a very bright and breezy nurse turned to my wife and said “So what are they going to do about his leukaemia?”

At that point I was still immobile and unable to talk due to trachy - that was a mind melt moment!!

[Poodle2 in reply to Sepsur]

It's mad...some humans are so resilient...you are definitely one of them ❤️

[bennevisplace in reply to Sepsur]

Unimaginable. I guess yourHU name derives from that experience?

[Sepsur in reply to bennevisplace]

Yes it does - for the first 18months after ICU - CLL was still ‘the best possible cancer you could have’ - although I was ultra wary of infection.

Funny old life - tomorrow marks eight years from when I woke from 2 month coma & a lot has happened since, numerous hospitalisations due to infections or injury, pseudo RT episode, Covid, pneumonia 4 times & treatment. Today’s lesson is how to mend a broken heart - literally not metaphorically

[bennevisplace in reply to Sepsur]

OMG. I can only wish you the very best, in medical care and outcome.

[Blue-bird_ in reply to Sepsur]

Have you taken any supplements since having treatment? My husband was diagnosed with CLL and CNS lymphoma in 2022 and had V+O followed by 4 cycles of MATRIX chemo and an auto stem cell transplant.

You mentioned mending a broken heart. My husband has not returned to his post diagnosis level of fitness and doctors haven't been much help after he reached remission. I've been using dietary supplements to repair his bone marrow function and recently read about Coenzyme q10. It is depleted after chemo and deficiency can lead to cognitive and cardiovascular issues. If you have been experiencing heart issues following treatment, it's possible that supplements could reverse some of the damage or at least prevent further damage.

My husband was having two transfusions a week until I started giving him supplements. He doesn't eat very much, maybe 1200 calories a day, so if your diet is more varied, you may not need many supplements. But B12, magnesium, potassium and most recently coq10 have helped to stabilise and increase his counts. He finally stopped needing transfusions once I started giving him b12 especially. I did inform his heamotologist that he was taking supplements and his counts are monitored regularly.

[Sepsur in reply to Blue-bird_]

I had a full blood test about 3 months ago - for the first time all measures were within normal limits. In the winter I take Vit d. If I start getting prolonged cramping - I start taking magnesium. When/if I have a bout of peripheral neuropathy - I start on B1, B6 & B12 - all help nerves to mend.

I have sinus bradycardia with a ventricular block mobitz 2 -

[Mwagner]

I was diagnosed with CLL as a result of being diagnosed with pneumonia which almost went septic. I was feeling lethargic, tired, and was running a fever. My wife saved my life. She took my temp and it was 104-5 and made arrangements to go to the ER. When we arrived she didn’t finish checking me in when the ER doctors whooshed me in and started pumping antibiotics into me. Not a drip, pumping them into my bloodstream. My legs has stopped working and was fuddled. The doc said I was likely a day away from death if I hadn’t been admitted to the hospital. Fevers and infections are nothing to take lightly.

[JigFettler Volunteer]

Well posted! Our Ambulances in SW UK have sepsis death stats plastered over the outsides of the vehicles. Rightly so. But for a paramedic to suggest seeing a GP instead of admitting to hospital cannot be safe. Sepsis has a treatment. The key challenge is to diagnose soon enough.

Jig

[Peggy4]

Great info. A scary subject which can’t get talked about enough. Thanks

Peggy

[Kbcjones]

Definitely worth talking about, not just for us but for our non-CLL family members. My husband saw his GP several years ago after a fever of 4 days. Without blood tests, urine tests or any other info he was told "it's something viral - take 4 ibuprofen every four hours and it will pass." When he became confused and almost combative the next day I called an ambulance and he spent 7 days in the hospital - septic from a UTI and getting transfusions for a stomach bleed from the ibuprofen. Needless to say we never went back to that practice, and he learned to speak up for himself and not just accept what a doctor says (as I had been telling him for years!) It was a scary time - but a good lesson learned!

[bennevisplace in reply to Kbcjones]

Thanks. Stories like yours are a lesson to all of us.

[Doggoneit101]

I've been septic 3 times in my life. The last occurrence I had elevated pulse, low blood pressure, extreme fatigue and low grade temp. I did experience mental decline and break down in skin integrity in the ICU when admitted. I was not on treatment when I got ill. My infection was biopsied and determined to be Proteus mirabilis infection that led to necrotizing fascitis of the abdomen. I've only been scared I was going to die twice in my life. This was one of those times. Absolutely frightening how FAST things can go BAD if not paying attention!

[Big_Dee]

Hello bennevisplace

i can say that my experience with sepsis was positive. I was in for my second day of B+R infusion and during per-infusion check, I had 103 deg F temperature. I felt fine. They admitted me into hospital at that point. I spent 5 days in hospital waiting for culture to process to determine if I had sepsis. All is well that ends well, I did not have sepsis. hospital gave me 6.5 liters of saline solution the first few hours in hospital which filled me with so much fluid I could not breath and my wife had to call charge nurse to get response, spent next day on diuretics to get rid of fluid. That was a whole other story.

[bennevisplace in reply to Big_Dee]

Thanks. I spent 5 days in hospital waiting for culture to process to determine if I had sepsis. This, unfortunately, is still the way it is done, and for some who do have sepsis it doesn't end well. As AussieNeil's post of a year ago makes clear, the relevant testing could be done accurately and much faster, but the medical profession is just not doing it healthunlocked.com/cllsuppo...

[beanlake14]

My mom died of sepsis. When we took her to the ER for a fall, I TOLD them she had CLL and low neutrophils. (I too have CLL) I asked for a broad spectrum antibiotic until we could figure out what was going on, why she fell. They declined. They didn't even take her blood until the next day, and still said they had to wait until the culture was back. I begged again for a general antibiotic. Declined. She died that night. Anger doesn't begin to describe how I felt when we got her death certificate which read sepsis.

[bennevisplace in reply to beanlake14]

A sad story, my condolences for your loss. I'm sure I would feel very bitter in those circumstances.

[Sanders9 in reply to beanlake14]

beablake14 I am so sorry for the loss of your Mum. What an horrific experience. Too often medical professionals fail to listen to the patient or their advocates

[W00dfin]

Sepsis spelled the end of my WW but went undiagnosed during exams by two different oncologists. I had to endure a bumpy two hour ambulance ride to the nearest major medical center and be admitted before I could get a diagnosis. I had been having daily fevers and chills which I learned are called rigors (pronounced long “i”).

[Ge77y]

I’ve just recovered from a bout in Australia. Had my 4th round of chemo, neutrophils below 1 then started to have the shakes. Temp still fine. Called hospital then paramedics. Bypassed ED and straight to acute ward. Temp 38.9 by then and vomiting/diarrhoea started. Antibiotics via IV started followed by 7 day stay in hospital. Initially in gut then went into bloods so another 3 day stay. This isn’t here to frighten you but to remind you to call in ambos early - don’t go to ED ( there were 100 people waiting in ED that night) as paramedics able to bypass this step for cancer patients. Don’t waste time. 100% grateful to NSW Ambulance service, WOLLONGONG cancer ward staff and hospital. Be your own advocate and make sure you inform them you are undertaking chemo.

[alexask]

Just a quick note that low levels of Vitamin D are a risk factor for sepsis, so get sunlight and supplement if you are not. Melatonin can also be helpful.

[Hidden]

My Dad died of septic shock from a UTI on March 22. The state is now investigating the nursing home. An ER Doc said to me over the phone, "Your father arrived here shaking with fever- the nursing home should have sent him here much sooner- this type of infection does not appear overnight!" It was horribly shocking. I drove from Vermont to Massachusetts to find him at death's door and then had to call his grandchildren and let them know that he was going to die that very day. Dad had recently recovered from a medical issue and was strong and his color was good right before this infection. We are all devastated.

[bennevisplace in reply to Hidden]

Thank you for contributing to this post, even though the events must be painful to recall. I'm so sorry for your loss.

[Hidden in reply to bennevisplace]

Thank you. Surprisingly, since my father died, I found out he had multiple myeloma, and that could have been why he went so fast.

[Bluebird0]

Is it possible to get sepsis from vaccines? I’m fairly newly diagnosed and in watch and wait and working on getting caught up with all the vaccines.

With my last vaccine, I had the most severe chills I’ve ever had. (My husband was going about his day in shorts and a t-shirt and I’m in bed with thermal underwear on, two quilts, a duvet, and another blanket and gloves on, and I was still shivering.) A bit nauseous but no fever. The time before that, I had a rash that covered almost my entire arm as well as the breast and around the side. I had a fever of 102.4. No other symptoms. I took acetaminophen both times.

I’ve always gotten a bit sick when I’ve had a vaccine but this is another level. Ive got a lot to learn. I knew about watching out for infections but I wasn’t aware of this concern for sepsis until reading this. Does this mean that I need to have blood work prior to each vaccine?

[AussieNeil Partner Administrator in reply to Bluebird0]

According to the Australian Immunisation Handbook; immunisationhandbook.health...

"People with severe neutropenia

People with severe neutropenia (absolute neutrophil count <0.5 × 10^9 per L) should not receive any vaccines, to avoid an acute febrile episode."

For one flu season only, for this reason, my doctor indeed recommended checking after each blood test to see when it would be safe for me to have my flu vaccination, but very few of us have as severely chronic neutropenia as I had in watch and wait. (I averaged a neutrophil count of 1.0 in my 11 years of watch and wait.)

Neil

[Bluebird0 in reply to AussieNeil]

Thanks Neil. My latest labs, less than a week before my last vaccine had my absolute neutrophil count at 5.9, one of my counts in the normal range. I guess I’ll just have to talk to my doc about these side effects when I see her next, perhaps before any more vaccines.

[bennevisplace in reply to Bluebird0]

It sounds like you have had some severe side effects to certain vaccinations. You may have reacted to one or more vaccine components, not necessarily the antigen itself.

With a weakened immune system we CLL patients are advised to avoid live vaccines (I'm sure your GP is aware of that) in case they trigger a full-blown infection, the end result of which could in theory be sepsis. Your doctor will almost certainly tell you that hasn't happened to you.