Are you sepsis aware? : Unfortunately I have just... - LUPUS UK

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Are you sepsis aware?

Lisalou19 profile image
26 Replies

Unfortunately I have just witnessed a dear friend of mine almost die from sepsis. I don’t want to frighten any of you but I thought it would be best to share some of the experience here, as he was recently prescribed immune suppressants!!!!!

The illness started with a very sore throat. Unable to eat properly. Doctor prescribed him penicillin as it was not a suspected infection

5 days after he began his medication, he started to perk up but very rapidly went down heel, he developed sores in his mouth and bad toilet problems. Doctor then prescribed an anti fungal spray

This stemmed over a 10 day period, and each time I spoke with him he said his getting better. Communication with him took a tumble, his replies either made no sense or they were very vague. WARNING SIGN ⚠️

I then engaged in a telephone conversation with him where he was saying he was going back to work, WARNING SIGN ⚠️ a sign of confusion , and his breathing sounded very laboured down the phone, WARNING SIGN ⚠️ I decided to pay him a visit and check up on him.

His appearance was deadly grey with very sunken eyes !!! Every breathe he took was noisy! He had noticeably lost weight . He was adamant he felt fine. I asked general questions such as what day is it? He didn’t know, but he knew his date of birth . My gut instinct was something was terribly wrong but of course you had to battle the patient who kept saying that he was fine. I followed my gut and once he was at hospital he was in intensive care for 4 days!!!!! He remained in hospital for 10 days. The doctors said he had maybe hours to live!!!!!

Again I don’t want to scare you I want to raise some awareness!!!!

Please do not ignore a potential infection that won’t go away!!!!! This awareness is also for you to look out for loved ones, do not take them saying they are ok as truth. The sepsis had spread to my friends brain which caused total confusion, he also lives alone so there was no one to monitor him as the illness took hold of him.

I hope if anything this post will encourage some of you to read into the symptoms and arm yourself of a potential health problem .

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Lisalou19
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26 Replies
Ianrussell69 profile image
Ianrussell69

I totally agree you need to be aware of the simptoms of sepcis if it was not for my wife insisting on going to hospital (this was after I went 8nto shock could not breath heart rate stupid high) any how 6days later I was discharged and told to buy my wife a big bunch of flowers I said yes she’s a good un and the dr said yes she is probably saved your life ! Sends a bit of chill down your spine the sepcis was coursed by a bad uti and the hydroxy and methatrexate so be cearful

Lisalou19 profile image
Lisalou19 in reply to Ianrussell69

Sorry you had to experience this illness, although you may not remember most of it. Good on your wife for looking out for you and saving your life. I often wonder if my friend has come to the realisation yet just how close he was to passing. Have you experienced any depression after? And how long did it take you to gain your strength back ? I’m glad you replied, and I hope you don’t mind me asking these questions. I think from my experience of this, it has created an overwhelming amount of anxiety towards his health ! I feel so blessed and grateful each morning he answers the phone .

Ianrussell69 profile image
Ianrussell69 in reply to Lisalou19

Two days lost just remember bits and bobs I still can’t accept believe how ill I got so quickly the infection is very fast I went from fealing a bit unwell to being very ill in about 24hrs but lucky my local hospital was having sepcis training lucky so I got all the correct Meds very quickly

Lisalou19 profile image
Lisalou19 in reply to Ianrussell69

It’s good to hear you were placed in good hands at your hospital. X

honeybug profile image
honeybug

Lisalou19 😊🌸🌿🦋

THANK YOU SOOO MUCH for your post. This is necessary to educate others about the seriousness on the course of illness. You SAVED your friend’s life.

I too have posted in the past about sinus/dental infections that causes brain death. My husband experienced this with only 24 hours to live he had emergency surgery to save his his life and months of recovery care.

Anytime antibiotics don’t continue to make you improve after a couple of days either it’s the wrong antibiotic for the infection or the condition is serious...especially anyone with autoimmune disease heart disease the very young and very old are at high risk.

If you are familiar with Sesame Street and it’s characters the creator of the show Jim Henson ignored an illness as most people tend to do. He was a healthy man but his illness progressed until it killed him.

It is better to listen to your body when you know you’re not well and seek medical care than to risk your life because you feel you’ll get over it.

These posts are meant to prepare you not scare you.

Again thank you for sharing your experience and the life saving measures you’ve mentioned.

👏👏👏👍🏻👍🏻👍🏻👌👌👌

😊🌸🌿🦋🙏🤗💗😘

I too share this horror having had two lots of sepsis in one year from different things but both relating to immunesuppression. Fortunately I was caught in time both times but the second was a post op wound sepsis that my GP was later mortified by because three days after my operation I went to see him with the hugest mouth ulcer hanging off my lip and he didn’t make the connection or look under the wound bandage to check for possible infection. I had to be treated for post op wound sepsis as a medical emergency on a hospital trolly on route to theatre about 4 hours later!

My gran died of sepsis from a prick from a tapestry needle 2 years before penicillin was invented so I have always been aware if how a tiny cut can lead to a life threatening situation. Also know 3 who have died from it in recent years. This is why campaigning to raise awareness about antibiotic misuse causing antimicrobial resistance is so important.

Well done you for saving your friend! X

honeybug profile image
honeybug in reply to

Hi TT 😊🌸🌿🦋

I’m sooo sorry you have been through this ordeal multiple times.

Please accept my deepest sympathy for the tragic loss of your gran from such a simple injury...nowadays that seems so surreal.

You have really suffered so much from all you’re going through and I admire you for your survival skills and willingness to educate others too. Thank you for sharing and caring to prepare not scare others about what happens if caution isn’t taken.

Take care and bless you dear.

😊🌸🌿🦋🙏🤗💗😘

eekt profile image
eekt

Thanks so much for posting this. It's my worst fear because I live alone. The confusion can leave you unable to seek help very quickly. I asked my GP what to look out for when I had a chest infection in June. He demonstrated rigor - uncontrollable shaking due to high temperature. The sepsis alliance has this:

sepsis.org/sepsis/symptoms/

sepsis.org/resources/infogr...

Well done for taking action and saving your friends life! 👏👏👏 xx

Lisalou19 profile image
Lisalou19 in reply to eekt

Sorry that you are on your own at home . I can understand totally your fears.

I would say my friend was completely unaware of how ill he was as the confusion had set in. He did attend the doctors for a second time, I think if he has been aware of sepsis himself he would of pushed for further tests. Unfortunately he knew nothing and plodded off back home with a anti fungal throat spray.

Most importantly for you, if you become ill and you see no improvement within 4 days after a gp visit, go back again. That is the best safety measure you can put in place for yourself . Xx

in reply to Lisalou19

Or phone a friend or family and get them to take you to A&E where you lay it on with a trowel. I know 3 people who failed to get sepsis identified by GPs despite all the clues and having family living with them. So probably it’s best to trust ourselves first and foremost to know that something is very wrong. X

Barnclown profile image
Barnclown in reply to

Yep, eg Last spring it was our kind closest neighbour asking how my “cold” was that prompted me to look more closely at my symptoms...Only THEN it dawned on me these were beginning to be “more than coldish”, so i saw my GP right away, she diagnosed pneumonia, we started immunology’s treatment protocol and were High 5ing each other 7 days later...badger was away at the time & i was on my own...the pneumonia had broken through my long term daily antibiotics...which is why i’m now due to start Immunoglobulin G replacement therapy...so YAAAY for Good Neighbours! 😘🍀

eekt profile image
eekt in reply to

Thanks Twitchytoes, it would take an ambulance at least an hour to get here, so I'd have to rely on someone taking me! xxx

in reply to eekt

Yes that’s why I suggested having a friend or family member or nice neighbour as trusted emergency contact - preferably with wheels! X

Barnclown profile image
Barnclown in reply to eekt

🌟🌟🌟 GRRRREAT LINKS eekt: THANKS 👏👏👏😘🍀

Barnclown profile image
Barnclown

GREAT post & GREAT discussion, lisalou...and SNAP:

Back in the bad decades before my infant onset systemic lupus & my bone marrow antibody defficiency illness were recognised (so therapeutically i wasn’t on any prescrip meds daily except NSAIDs & opiate pain killers) my GPs & i became so ACCUSTOMED to me needing & responding well to antibiotics for multi-system infections that both me & my medics failed to spot that with aging + progressive physical deterioration, my infection-pattern was becoming “complex & persistent” (of course: by then i was only in my 30s-40s)

The result was, everyone missed:

- Oral antibiotics failing to fully conquer infection due to puncture would from ancient filthy blackthorn barb (result: finally my Boss had me driven to A&E where i was admitted with septicaemia) ...days on IV “Dettol” SAVED MY LIFE, but i needed MONTHS of physio for the puncture wound hand & the attached arm to recover full

- Oral antibiotics failing to actually fully conquer any of those infections i kept getting all those decades...so these lurked and gradually became permanent infection sites - my immunology calls “pockets of persistent bacteria driven sepsis” (in my upper jawbone + respiratory tract + stomach + urinary tract....all of which can easily segue into full blow septicaemia - especially now my SLE (&co) has been rediagnosed and am benefitting hugely from daily myco+pred etc immunosuppression)..so immunology has me on daily antibiotics forever, and Immunoglobulin G Replacement Therapy is due to start soon

My diagnostic mix is particularly unusual, but we’re all complex and unusual cases...the vigilance you’re all advising is TRULY MADLY DEEPLY important &...BASIC common sense, especially in our cases - due to our daily immunosuppression meds

Like the others, i knew someone well who died from septicaemia (due to a rose thorn puncture wound...he was elderly + a great gardener - should’ve known better...but this was back in the 1970s...septicaemia consciousness & medicine weren’t where they are now)...and yet, it never occurred to me that blackthorn injury could finish me off.,.,thank goodness my Boss was proactive....

🍀😘🍀😘🍀😘 Coco

honeybug profile image
honeybug in reply to Barnclown

Ohhhh poor you Bc 😘🤗

I’m so sorry you have had all of this due to filthy blackthorn barb poke.

We lost an Uncle because he wouldn’t listen to my warnings about reusing diabetic needles for insulin injections to save him money.

He got sepsis too and died a very horrible death from such a preventable action over being greedy about money. I don’t believe he even precleaned his injection sites either as he was one of those guys who just didn’t think washing your hands etc. was a big deal.

That mentality despite our trying our best caused unnecessary suffering and his death...it makes me so angry when I think about it because i/others tried so hard to prevent it to no avail.

Ignorance is not bliss as I’ve heard many over here say...it’s downright dumb sometimes.

Thanks for sharing how your poke progressed...a VERY IMPORTANT life lesson.

Extra special loving hugs 🤗 to you sweet friend. Sooo sorry 😐 this has such a tragic affect for you sweetie.

🌸🌸🌸🌹🌹🌹🌸🌸🌸

EvaJo 💋💋💋🙏🙏🙏💗💗💗😘😘😘🌿🦋

Barnclown profile image
Barnclown in reply to honeybug

YIKES! So many terrible tales....am so glad lisalou posted 🌟🌟🌟🌟👏👏👏👏👏😘

Lisalou19 profile image
Lisalou19 in reply to Barnclown

Sends shivers down my spine !!!!! This illness is so ignored and yet it impacts so many lives 😢

The strange thing was sitting in the waiting room of the icu and there were leaflets on sepsis! my friend was given a letter from his rheumatologist that he took to his doctor advising them to keep an eye on any illnesses that occur once he started his medication! This was ignored and proved to be almost fatal!!!!! X

Barnclown profile image
Barnclown in reply to Lisalou19

😨 OMG...there it is...SHIVERS IS RIGHT! 👍😘🍀

Lupiknits profile image
Lupiknits

Thank you for this warning. You are a good friend and saved your friend's life.

Thanks to others for info, especially about living alone.

eekt profile image
eekt

It was an NHS Scotland poster in a pharmacy that alerted me....I though it was vvvvvvv rare....but something along the lines of 60 people a day die from sepsis in Scotland. Here's a quote from healthcareimprovementscotla...

"Sepsis kills around 37,000 people in the UK every year – more than lung, bowel or breast cancer. It is the most common cause of death from infection – and the incidence of sepsis is rising each year. Evidence shows that each hours delay in administering antibiotics to people with severe sepsis increases the risk of dying by 7.6%."

Very glad you posted, it's something everyone needs to know about xxxx

crashdoll profile image
crashdoll

The scary thing about sepsis is how confused it can make you. There was no way I could have phoned for help. I was unable to even raise my arms or say my name. The out of hours service called an ambulance. I was fortunate they recognised the signs and started me on antibiotics in the ambulance. I hope the general public (our family and friends included) know the signs. Your friend is lucky to have you.

I nearly died from septic shock. I’m not saying it in the dramatic “oh I could have died” way but the intensive care staff told my family if I didn’t improve soon, I never would. One day I was coughing and at the doctor surgery, 25 hours later I was on life support. It’s fast and it’s scary.

eekt profile image
eekt in reply to crashdoll

XOXOX so glad you're here to tell the tale...thank you for sharing 💖...I had a chest infection that got to the point I couldn't respond to someone saying my name...and it's very very frightening...go, crashdoll go 💪💪💪 xxx

Lisalou19 profile image
Lisalou19 in reply to crashdoll

Thank you for sharing your experience. To read this makes me feel very sad, I can imagine just how poorly you were.

Thank goodness you got through it. These stories need to be told more.

X

Melba1 profile image
Melba1

Thanks for sharing this - a very important issue and very pleased your friend survived it.

They have a quick sepsis protocol in hospitals now but that's only any good if the patient is aware enough to get to hospital. I had it in my early days with lupus, just had normal flu and then didn't recover, I did have a sudden funny perception that things were very wrong but then became very confused. Fortunately one my sons (he was only 9 poor boy) came home from school and rang the Dr who came and called an ambulance. They said it was neutropenic sepsis (my neutrophils were 0.1), my organs were failing and as my skin had started to mottle and I had the rigours, I probably wouldn't have survived the night. I still remember the lovely junior Dr, Dr Tom, who sat with me all night.

I hope your friend recovers quickly. I was quite weak for a while afterwards but that may have been because the lupus was active. I kept worrying it would happen it again but it never has!

x

Lisalou19 profile image
Lisalou19 in reply to Melba1

My friend says his very weak and his taste buds have changed.

Well done to your son, that must of been scary for him.

Glad you got through it and was seen by a good hospital

Xx

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