Anyone else has this Mycobacterium Ch... - British Heart Fou...

British Heart Foundation

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Anyone else has this Mycobacterium Chimaera scare?

samurai2565
samurai2565

Mycobacterium Chimaera anyone involved with this after Open Heart surgery, I have had blood test's done but not the correct ones for this. I have tried Private Blood testing places but again with no luck, I am worried about this Virus I have many of the symptoms listed in the NHS letter sent out after the Daily Mail uncovered this terrible virus that Southampton Hospital tried to hide. This is a recent reply from the Nuffield group:~

Thank you for your enquiry. Unfortunately, due to the specialised nature of of your enquiry, it is not something we can assist with through this service. We don't for example culture for "routine" Mycobacterium let along investigate for Myco. chimaera. Should there be a requirement for a site culture this needs to be a tissue sample as swabs are not acceptable, so would again involve clinical input.

If you have any specific concerns regarding whether this is an issue for you it may be better to raise this with the clinical teams managing your bypass if you haven't already done so.

Not very good when they make spelling mistakes. But anyone who is worried about that letter that the Hospital of Southampton sent out last year, I would be glad of any lab I can apply to get a private Blood test done to see if I actually have this virus.

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skid112
skid112Heart Star

Hi there

I think any reliance placed on a Daily Mail article is sorely misplaced. Public Health England puts the number of cases at 43 to September 18 this year (gov.uk/government/collectio...). The CDC puts it at 0.25 per million cases in 2017 (wwwnc.cdc.gov/eid/article/2...).

The NHS has also published guidance for professionals in this area over the past year.

That said, go and talk to your GP about your fears and see if they can arrange for this test for you

regards

Mark

samurai2565
samurai2565 in reply to skid112

Thank you Mark, but it took me 18 months of complaining that I wanted that test for the Virus, My doctors kept sending me for normal blood tests which apparently is not correct when testing for Mycobacterium Virus. It is reported 25 people have died having had this virus and the first paragraph in the letter I got from Southampton Hospital said not to worry it was treatable. But Since my heart op I have felt worse than I did before it. To even get that letter 3 years after the operation is worrying enough, but to have to keep requesting to be tested for that Virus with my doctor and Hospital just wears you down. Even now I have been told that test I had was not the correct one according to new articles having been released and even those tests I had to chase up my doctors not informing me of the results. To top all that I was told by my Doctors to stop wasting their surgery time!

samurai2565
samurai2565 in reply to skid112

This is from one of those links you sent ~ investigations of a worldwide epidemic of invasive Mycobacterium chimaera associated with heater–cooler devices in cardiac surgery have been hampered by low clinical awareness and challenging diagnoses. Using data from Switzerland, we estimated the burden of invasive M. chimaera to be 156–282 cases/year in 10 major cardiac valve replacement market countries.

Invasive Mycobacterium chimaera infection associated with heater–cooler devices (HCDs) in cardiac surgery was identified as a new disease entity in 2014 (1). The most likely pathogenesis involves aerosols transmitted from the HCD to the patient during surgery (2). As of September 2017, ≈120 cases have been recognized globally; mycobacterial device contamination at the manufacturing site of the LivaNova 3T (LivaNova, London, UK), the HCD market leader, seems to represent the most likely point source for the outbreak (3,4). The incubation period after exposure is long, with a median of 17 months (range 3–72 months). Signs and symptoms are generally nonspecific and include fatigue, fever, and weight loss. There is no established therapy, and the case-fatality rate is ≈50% (3,5). The disease appears to be rare and most commonly affects patients after valve replacement or other implant procedures in open heart surgery. Currently, the extent of the epidemic is unknown. We aimed to estimate the global epidemiology of disseminated M. chimaera disease associated with open heart surgery. The study followed the Guidelines for Accurate and Transparent Health Estimates Reporting (6).

skid112
skid112Heart Star in reply to samurai2565

Indeed, its why I posted it, but still there is very little known, more research is needed, but still low incidence of occurrence

I was warned about this virus by the surgeon prior to AVR and 3 xCABG in July. The risk is 1:5000 now, as stated in the surgeon's report. It was emphasized that if I had a temperature lasting a few days I must tell my GP that I had had Open Heart surgery. I was told that the risk was there for up to four years.

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