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HAI: Necrotising fasciitis?
Started by Stephanie Walker
Posted: July 26, 2006 at 16:36
Hi all,

I've been reading the posts to this site and noticed that necrotising fasciitis (aka NF or, as the media insist, the 'flesh-eating bug') doesn't seem to appear here as an HAI. I picked up NF last year following a hysterectomy in my local hospital. I became very ill 2-3 days after my op and my condition deteriorated rapidly until I ended up on an Intensive Care unit. I needed 6 debridement ops over the next 12 days (to cut away all the necrotised tissue from my abdomen), my bp fell to dangerous levels, my major organs began to fail and I ended up on a ventilator. I was put onto big doses of IV morphine for the pain and had many morphine-based hallucinations which were at times really distressing. Altogether, this was not a good experience!

The consultants (and there were many of them!) didn't seem to know what to do at first. I tested negative for MRSA and although they knew it was some kind of wound infection I was not isolated at all - I wasn't even moved to a side-ward. I was on all kinds of potent antibiotics (vancomycin, clindomycin, gentomycin, etc) since the microbiologists couldn't be sure which (if any) would work (they didn't seem to be able to isolate and/or grow the bugs in the lab). By the time they had finished debridements my wound was 47 x 30cms and was 3cms deep. After the worst was over they told me that they were not expecting me to make it. I was in hospital for 6-7 weeks and then had to go back later for a skin graft. (At that point I was terrified that I'd get another infection in my leg - the donor site for the graft. Although they attempted to reassure me, even they could not be certain that this wouldn't happen!).

In the end, NF was diagnosed through the histology on the flesh they had removed. They reckon it was probably Strep A, but it could have been Staph aureus, Pseudomonas, E. coli, or one/some other organisms.

When I asked why I'd ended up with it they told me it was "probably on your skin when you came into hospital". I don't know about that, but I do know that a member of threatre staff coughed over me during the original op (I was conscious since I had a spinal rather than a general anaesthetic). I also remember a nurse telling me, two days after the op (a Saturday) that my wound looked a bit "red and inflamed" and that they would keep an eye on it. At that time I had a temperature and was throwing up. Unfortunately her comments were not recorded, no one kept an "eye on it" and it didn't get looked at by a doctor until Monday morning - by which time the exterior of the wound was looking nasty - heaven knows what it was looking like on the inside! My first wound debridement took place that day.

During my lengthy stay in hospital I also noticed that the cleaning regime was not terribly good. The cleaning is done by outside contractors and the level of cleanliness could have been better. On one occasion I remember that my wound leaked a little onto the floor as they got me out of bed to sit in a chair. That spot of leakage dried on the floor and stayed there for days! It was the woman in the next bed who pointed it out to me and then I asked the staff to get it cleaned up.

Since coming out of hospital I've read up quite a lot on NF (and other HAIs). I joined a UK online supporters' group (the Lee Spark NF Foundation) and am well up for doing all that I can to raise awareness about this awful disease.

I notice that there have been media stories recently about the increase in cases of C.diff (up nationwide by 17%) and that there has been a supposed decrease in MRSA (down, nationwide, by 2.5%). Nothing was said about NF - I'm pretty convinced (along with others I talk to through the online NF group) that we are not getting the true story about the rates of NF nationwide. Hospitals seems very reluctant to acknowledge cases, and, I believe, they often choose to use a different label - rather than "NF" when a patient clearly has it and/or dies from it.

I know that NF can be picked up in the community (I have met one or two people who have picked up their NF this way - through minor cuts) but quite a lot of cases that i know about are related to hospital stays.

A few months ago I returned to work (just part-time) after recovering from my NF. By occupation I am a psychologist and have decided to take up the challenge and try to collect some data on the psychological impact of NF on survivors, friends/relatives of survivors, and those who have lost loved ones to this dreadful infection. I'm working in conjunction with the Founder of the Lee Spark NF Foundation (Doreen Marsden - she lost her son to NF). Doreen has been fighting for several years to raise awareness about NF. At the moment we are trying to get NF recognised as a notifiable disease. We have a petition currently ongoing - if any of you would be willing to support us by signing this, it is accessible thru' the Foundation web site (http://www.nfsuk.org.uk/).

I guess that's all from me for now - other than to wish you well in all that you do.

Best wishes,
Steph Walker


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Re: HAI: Necrotising fasciitis?
Reply #1 by Bev Hurst
Posted: July 26, 2006 at 17:20
we do have a link on our website www.mrsaactionuk.com to NF and we also list it in the CA-MRSA information i have also met Doreen and know of all the brilliant work she is doing and the early warning leaflets that she got going. Sadly none of the HCAIs are notifiable diseases and thats where a lot of doctors get mislead they think that only notifiable infections are required to be written on death certificates ~ this is wrong its all healthcare associated infections that are in the sequence that leads to death as per the CMO guidance updated april 2005
best wishes for the work you are doing
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Re: HAI: Necrotising fasciitis?
Reply #2 by Steph Walker
Posted: July 26, 2006 at 20:53
Bev - thanks for the reply. I did notice the links to the NF Foundation - I guess I was wondering if this site actually had anyone with experience of NF posting to it.

Thanks also for the info - I didn't realise that other HAIs are not notifiable. I do know (from talking to Doreen) that it is very difficult to get NF put as a cause of death onto a death certificate - which, IMHO, is extremely suspect!

I guess we will all just have to keep at 'em!

Steph
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Re: HAI: Necrotising fasciitis?
Reply #3 by Bev Hurst
Posted: July 27, 2006 at 09:08
hi Steph

i have often wondered the connection between NF and MRSA as my mums surgical site wound broke down and there was a huge gaping hole that never healed we also have many members who have suffered the same, although my mum was diagnosed with MRSA and i eventually discovered the strain was EMRSA-15 which is hospital acquired ~ we have also spoken at length to 2 leading microbiologists on this subect and the link is potentially very very frightening
also if we are to believe the DoH that 25% is brought into hospitals then that means there is a huge problem in the community
best wishes
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Re: HAI: Necrotising fasciitis?
Reply #4 by John
Posted: July 27, 2006 at 10:09
NF is caused by a very common bacteria called group A streptoccocus, it does not always cause NF and this is very rare (considering the amount of group A strep that is around). It is not a superbug and caused many deaths prior to antibiotics being discovered. It is however very nasty and requires medical/surgical treatment immediatly. No-one knows why it causes NF.
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Re: HAI: Necrotising fasciitis?
Reply #5 by Bev Hurst
Posted: July 27, 2006 at 11:44
NF can be caused by a number of bacteria the most common being Strep A BUT it can also be caused by Staph A either alone or in synergism ~ other aerobic & anaerobic pathagens can also be present its a soft tissue infection just as CA MRSA has been described as and thats why i wondered about the connection ~ the mortality rate for NF is far higher than MRSA
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Re: HAI: Necrotising fasciitis?
Reply #6 by John
Posted: July 27, 2006 at 14:21
I belive that NF is caused by streptococcus infections not staphyloccus. There is a strain of staphylococcus that is PVL forming (very confusing but not a superbug as it has been reported) this can cause very nasty skin infections, this may be what you are getting confused with.
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Re: HAI: Necrotising fasciitis?
Reply #7 by Bev Hurst
Posted: July 27, 2006 at 16:01
i did say the most common bacteria is Strep A but it can be caused by Staph A as well in some cases there are also other pathogens that can cause the NF infections in many forms ~ i would say as well that in america thats where they have the worst CA-MRSA cases and this also can lead to NF ~
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Re: HAI: Necrotising fasciitis?
Reply #8 by john
Posted: July 27, 2006 at 16:45
MRSA or CA-MRSAdoes not cause NF. Find me a website please that says it does.
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Re: HAI: Necrotising fasciitis?
Reply #9 by john
Posted: July 27, 2006 at 16:46
ok i found one myself! http://content.nejm.org/cgi/content/short/352/14/1445
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Re: HAI: Necrotising fasciitis?
Reply #10 by john
Posted: July 27, 2006 at 16:51
Having now read the article it appears that it is the PVL gene that caused the NF. Well you learn something new every day - sorry Bev.
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Re: HAI: Necrotising fasciitis?
Reply #11 by Bev Hurst
Posted: July 27, 2006 at 17:07
ok apology accepted i try not to post anything unless i have some facts on it and as i said earlier i spoke at length with a leading microbiologist who was explaining all the pathogens, bacterias and strains with MRSA and CA MRSA not that i took it all in but it gave me an insight and i do a lot of reading on the subject
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Re: HAI: Necrotising fasciitis?
Reply #12 by Callie
Posted: July 27, 2006 at 18:19
I believe that PVL producing strains of Staph aureus are not that common in the UK. PVL stands for

Panton Valentine Leukocidin. Panton and Valentine are the scientists who discovered toxin and a leukocidin is something (a toxin) that kills white blood cells.
12836
Re: HAI: Necrotising fasciitis?
Reply #13 by Kely Anne
Posted: June 9, 2018 at 23:49
I Was diagnosed with MRSA. After taking antibiotics and tried
everything else without success. I found out about this two over-the-
counter medicine that kills the boils. I made a full recovery.
I never had boils again. I am so happy now!

Visite they website: https://perfectvivi.wixsite.com/mrsafree

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