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MRSA in the lungs
Started by Mia
Posted: July 10, 2004 at 21:03
My father has had recurring episodes of MRSA in his lungs for two years now, he's at the moment just coming into the third week of his stay in hospital this time round. The Vancomycin seems to ward the bacteria off for a while but it always comes back (usually after approx 6 weeks). I see so much on the news and in the papers about MRSA in open wounds but have seen nothing about it internally. Does anyone else have any experience of this? Any info would be greatly appreciated!
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Re: MRSA in the lungs
Reply #1 by Maggie
Posted: August 7, 2004 at 14:29
Hi,
I have only just read your message posted approx. 4 weeks ago. I hope your father has now recovered and has returned home.

I too have MRSA in my lungs. I am 43 years old, and have suffered for approx. 2 years with gallbladder disease. I am POSITIVE I picked up MRSA at the end of December, 03 when I was again admitted in the local hospital suffering with severe pain.

When I came out I was extremely feverish, with severe headaches and began to suffer really bad facial pain (which I put down to sinusitus) and felt "chesty". I felt feverish on and off for months, very week and fatiqued all the time. But just thought it was because of the gallbladder problems.

In April, 04 I had my G.Bladder removed in Manchester. After the surgery, one of my lungs partially collapsed. It was then they discovered I had MRSA.

I could not fault the hospital in Manchester - their standard of care was excellent. 100% better than the "care" I'd received in the local hospital in Cumbria. Also, in Manchester, within MINUTES of MRSA being diagnosed, I was whisked off into a single "isolation" room, and no one was allowed in without aprons, masks, gloves, etc. Then before they left, each person had to "scrub up" with special cleaning fluid, etc. and leave all their aprons, masks etc. in a special disposal bin. I was treated with 3 lots of antibiotics, simultaneously, via IV whilst in hospital in Manchester.

In comparison, I was unfortunate enough to have to be admitted into the local hospital again, in Cumbria, in June, 04. We told them I had MRSA. I was put in a single room, BUT that was it, basically. Not one doctor, or nurse, EVER put on gloves, or mask, or gown, during the 4 days I was an in-patient.

When I queried this with the ward "matron" I was told I was "lucky" to be given a single room even, as on some of the medical wards, MRSA patients were put into the actual wards with other patients, as MRSA is now so common! (Is there any wonder???)

I still have MRSA in my lungs - I received sputum swab results yesterday (6.8.04) confirming MRSA is still present. When I asked about treatment, I was told by staff at my GPs surgery that no treatment was recommended, just to re-test in 2 weeks. (When the previous sample, in approx. May, was positive, I was told it was too risky to treat as many blood tests were first needed, because my liver was still recovering from all the surgery I had had).

This latest sputem test was only taken 2 weeks ago, because I was suffering badly with my breathing again.
(I have NEVER suffered with chest problems before this. Nor have I have EVER smoked - yet I feel my chest is worse now than that of either my mother's, father's, brother's & sister, who ALL smoke heavily and have all done so for years.)

Good luck.
Maggie
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ITV
Reply #2 by Fiona
Posted: August 16, 2004 at 12:26
Hi Mia,
Is your Dad still in hospital?
Fiona Campbell
175
VRSA treatment
Reply #3 by Dr Colin Walklin
Posted: August 21, 2004 at 12:15
For successful treatment of vancomycin-resistant S. aureus:

http://www.phagetherapy.org/

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Maggie
Reply #4 by Michelle
Posted: August 27, 2004 at 21:29
You say you had mrsa in the lung? How long have you had it and what did they say they could treat you with?
I got it. 11 weeks so far with no treatment. I have postedup an article if you want to read it. Good luck with getting better. Let me know how you get on. Best of Luck! Michelle.
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Re: MRSA in the lungs and Alpha 1 anti-trypsin
Reply #5 by Jackie Hanley
Posted: November 22, 2004 at 08:32
I've been concerned to read of others' experiences re. lungs. I'm also worried about local hospital - are hospitals legally bound to always treat MRSA or are they brushing folk under the carpet to suit their own political situation (there are very few single rooms)?

My husband, Bill, has partial Alpha 1 anti-trypsin deficiency, which, triggered by smoking, has caused emphysema. Alpha 1 is a rare genetic disease.

A year ago, 11 Nov 03, he was admitted to hospital with a virus. At one point he had a 50/50 chance, followed by pneumonia which, I believe, was caused by MRSA. He had intravenous antibiotics for MRSA and was discharged at 1.30am on Christmas Eve.

Follow up testing showed MRSA was still present. The locum doc did not want him re-admitted, but our GP did. More intravenous. No follow up tests requested.

After a routine clinic appointment a month later, sputum test done only after I asked if he still had MRSA. Yes, 6 week course of rifampcin and trimethoprim. A rash developed near the end of that course and they were stopped.

At end of April sputum test showed no MRSA. At end of May antibiotics for proteus mirabilis, whatever that is.

He has been OK until now. On 29 Oct I asked consultant if he still had MRSA - "If he has, he'd be sick". Sputum test requested and it's back. GP has written to hospital twice. They are ignoring Bill who is suffering having to cough up a lot. I wonder why?

I am of the understanding Alpha 1 makes anything hard to treat.
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Re: MRSA in the lungs
Reply #6 by Chris
Posted: June 19, 2005 at 13:22
My mother (we're from the US) has been diagnosed with MRSA. She has had 3 bouts of pneumonia. After the 2 time with pnuemonia, she was diagnosed with MRSA. She has had several sputum tests to confirm that the MRSA has returned. She has had a bronchia-scope that shows Doxycyline will help with it, but the MRSA recurrs. Most recently she has been told that once this dose of medicine is over, she will stay on a lose dose of antibiotics forever to control the MRSA. This can't be good,can it? Has anyone found success with something? penpaper3@hotmail.com or wwwginhouse@aol.com
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Re: MRSA in the lungs
Reply #7 by Diana
Posted: September 6, 2005 at 20:14
I was so happy to find someone who has had experience with this monster. We are in the US. My son had a wisdom tooth removed and the surgeon broke an inch long peice of jawbone and it stayed in there for months of pain. Then when it was found by a dentist and he returned to the surgeon he simply ripped it open and removed it. Three days later he was running a constant fever of 103-106. Horrible,he was diagnosed with pneumonia in both lungs and treated with Levaquin, xrays showed the pneumonia cleared. But, days later it was back again,worse. He was again treated ,still no improvement ,went to another doctor, this one treated the pnumonia with Zithromax,with very little sucess, then his joints ached and his knees swelled especially the right one and were on fire. all this time he was not eating and burning with fever's of 103-105 and soaking the bed with sweat.This doctor said he had deeveloped sepsis and gave him two of the injections of Rocephin, that burn like fire,he fell to the floor and fainted on the second one. This gave no improvement. Then he returned to the doctor who detected blood in his kidneys and suggested he check into the local hospital. I had had enough this had gone on for over two months and he was dying, I drove him to a hospital in a city and when we arrived at the emergency room,the fever had stopped he was ashen and gray looking and was covered in cold sweat. They took one look at him and took him in immediately. His blood pressure had dropped to 68/42 and they could not get a line in for IV fluids, his veins were collapsing. He had lost over 40 pounds and was terrified by this point. A doctor in emergency detected a very serious heart murmer.They tested him for everything for three days ,he was negative for evry disease know to man. Then finally they decided that the testing would have to be done while the fever was running at over 102, so they removed his IV antibiotics and let the fever return and then they found MRSA, it had infested his lungs, joints, kidneys , and most important the vlaves in his heart,bacterial endocartitis is a very serious thing at any time , but when the infestive agent is MRSA it is horrible. He was treated 8 days in hospital anad the relased to go home and we continued with the IV Vancomycin for eight weeks. He improved greatly and started eating and looked reasonably well. We returned to cardiologists who said he should have at least one of his heart valves replaced, but when we considered that he still had the MRSA lurkingin there , we were hestitant to have the surgery done, and now it has been a year since he was diagnosed and this stuff has started up again. This time it started in lungs and his hip joints and then his shoulder and and we have gone throught the Zithromax and Ketel,and Levaquin and are going to have to go back to the hospital today or tommorrow.
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Re: MRSA in the lungs
Reply #8 by Maria
Posted: September 6, 2005 at 22:20
Does anyone know how it spreads to the lungs? Mum's original infection was a surgical site wound in the abdomen.

My mum had a lung infection, empyema it said on the notes. A section of lung was collapsed. I had written to the hospital stating we had not been told mum had a collapsed lung. They corrected me and said we weren't told as it never existed, it was a partially collapsed lung indicative of infection or pneumonia. How sensitively put (not).

That was honest of them, except they didn't tell me the nature of the infection. Health Protection Agency test results show a variety of bacteria, including MRSA in the aspirated fluid.

Mum was given chemotherapy for the spread of cancer - they didn't think to tell Oncology about the infection, we were told the chemotherapy could extend her life for up to a year (no guarantees).

But mum remained breathless and exhausted. She went into a coma and did 5 weeks later - we will never know if the MRSA was still present or if it contributed to her death.

They don't think its necessary to worry about their poor record keeping or the lack of information sharing to patients, their dependants or other healthcare teams, like Oncology (aren't these patients higher risk?). They apologised for the dirty hospital ward mum was in, but boast that they are at a consistent amber now (oh yes, and they achieved green in May 2004, wow!).

Still, I have the chance to look them in the eye and ask them the question directly this week when I meet them to discuss my complaint, let's see how honest they are then.
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Re: MRSA in the lungs
Reply #9 by richard jones
Posted: September 7, 2005
i have got cystic fibrosis and recently been told that i have contracted MRSA through all my regular hospital visits they are going to start an Antibiotic named vancomycin which is inhaled through a nebuliser i am 23 yo and upon having cf i now have this and the hospital told me they were not sure of the implications of having it on the lungs i now know that it can cause septiceamia and/or pneumonia both of which are very nasty through research i have done i found there is another antibiotic tried and tested in the U.S under the name of zyvox (i think) so hopefully they can use their common sense and give it to those who need it hope this can help take care Richard
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Re: MRSA in the lungs
Reply #10 by Bev
Posted: September 7, 2005 at 09:08
maria ~ they don;t tell anyone anything ~ 2 years on and i have only just found out my mum had it on the lungs as well ~ and no where at anytime did they inform us as a family ~
i wish i could go with you to the meeting ~ make sure they give you all the answers ask the question over and over again until they do
x
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Re: MRSA in the lungs
Reply #11 by Derek Butler
Posted: September 7, 2005 at 21:19
Maria.
Forgive me for saying this,but i would not trust them as far as you could throw them,why,because they will be out to protect there own selfs as much as possible.From our own experience they will be very vague with there answers and will not divulge anything unless they are asked a direct question relating to that topic.

In our own meeting we let ourselves get side tracked by them,and we wasted the time allotted to us in my opinion now.If we had our time over again i would have approached the meeting much diffrenrtly,i would certainly not be as emotional as i was that day.I would be as cold and callculating as they were and i would have had my questions ready for them to begin with.

The hardest thing you will find i believe,is for you and your family to try and not be emotional,sadly however that will be very hard,because it will bring back so many painfull memories.I wish you the best for your meeting,and i would try to keep a record of what is said and by who for later reffrence.

Good luck Maria with your meeting.

Derek x
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Re: MRSA in the lungs
Reply #12 by Phip
Posted: September 7, 2005 at 21:30
Maria,

I too would like to know how it manifests itself in the lungs - we were told one of my Dad's lungs had collapsed after surgery and was full of fluid. He then got pneumonia, but it wasn't for some time until he was moved to ICU that we discovered written on his file MRSA pneumonia, and that was when the hospital first spoke to us about MRSA. Dad's op was on his oesophagus, so granted that is near his lungs, but the surgery didn't touch his lungs, so how come some people get a blood stream infection, whilst alot of others seem to be free of MRSA in bloods, but have it in their lungs? Does anybody know?

The second time Dad had MRSA, I am pretty sure the MRSA got in when a catheter was inserted. But again it was MRSA pneumonia, so was lungs as opposed to blood stream. Why? His death certificate recorded bronchial pneumonia with no mention of MRSA. The hospital have acknowledged that he HAD MRSA, but have never admitted to us that it caused or contributed to his death. However, they did write to his GP saying that MRSA was certainly a factor in his death.
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Re: MRSA in the lungs
Reply #13 by Maria
Posted: September 7, 2005 at 22:36
Thank you all for your support. I'm going with someone independent from ICAS. It would be too traumatic for dad. We have drafted up very specific questions, I will have them in front of me, and I will tick them off when I have a satisfactory answer, I will keep asking until they answer - if they can't answer I will tell them to find out and respond in a letter.

Not only do I want answers, I want them to deliver actions to avoid doing this to anyone else.

The medical records are a shambles - they were so poor at communicating and managing the MRSA, it beggars belief.

The lack of hand hygiene, filthy ward and failure to follow aseptic technique were the tip of an iceberg as far as I am concerned.

And Phip, this means our loved ones weren't counted in the governments figures, as they weren't bloodstream infections, not even given a number in terms of the published statistics. What sort of a country is this that is prepared to sweep this to one side?
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Re: MRSA in the lungs
Reply #14 by linda mccafferty
Posted: September 8, 2005 at 01:05
Good luck maria at your meeting
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Re: MRSA in the lungs
Reply #15 by Maria
Posted: September 9, 2005 at 13:44
Thank you all for your support. The meeting went very well indeed.

UBHT have apologised and this was re-iterated yesterday.

A lot is being done to improve information sharing between healthcare teams, patients and relatives, with the appointment of an Infection Control Nurse specifically for this purpose. Personalised information is to be provided to patients and carers regarding healthcare associated infection. This will include what treatment will be necessary and the precautions that need to be taken.

Hospital cleanliness still has an Amber rating, which is not acceptable, and this is recognised by the Trust. The Trust also recognise that cleanliness impacts on healthcare associated infection and are working to improve the situation. They have brought the contract back in-house and the cleaning is managed and monitored on the wards.

Hand washing is audited on a monthly basis by Infection Control Nurses, this involves observing hand-washing opportunities, and whether these opportunities were followed. If a ward achieves 100% then they are accredited with this through publicising this on the ward. It is anticipated this approach will encourage other wards to achieve 100% compliance. There is counselling and auditing of non-compliant individuals. The information will be reported to Trust Boards and made public.

The Trust are interested in working with MRSA Support, however there is no co-ordinated local group, so I am working with Bev to establish links from the membership information to establish if anyone is interested in taking part (Bristol and surrounding area). Iím quite happy to lead locally unless anyone else feels they would like to do it.

We have agreed that mumís case may be used as a case study to look at Clinical Risk Management, so that lessons can be learned.

We have already exchanged information on the British Thoracic Society and good practice in managing infection on the lungs.

There will be a further meeting with the clinicians to talk through the management of mumís cancer and the MRSA, as there are questions that they felt the clinicians needed to answer.

I donít think it will be possible to assess what happened in terms of any resurgence of the MRSA infection in the lungs, this sort of question would only be able to be answered with a post-mortem, and I have always known that. Mum had said ďplease donít let them cut me any more when Iím gone, I donít want a post-mortemĒ. We wouldnít therefore request this at the time.

No-one can turn back the clock, but it has proved worthwhile going through the complaints procedure to be able to contribute to changes in the way MRSA and other healthcare associated infection is managed in the future.

The Trust were also interested in our response to the government on the Hygiene Code. I had pointed out that the Healthcare Commission were proposing another bureaucratic performance indicator based on NICE guidance, whereas the Department of Health were working with Trusts on Saving Lives. They were keen for us to lobby the Healthcare Commission as having 2 systems will make the management of HAIs difficult.

I only wish that everyone who comes to MRSA Support for help and advice could say the same, as I am only too aware of the further anxiety caused by trying to use the complaints procedure to change things in other Trusts. I would recommend someone independent from ICAS attending any interview and advising on the approach to Trusts, I found Sue extremely helpful and supportive.

Thanks everyone.
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Re: MRSA in the lungs
Reply #16 by Bev
Posted: September 9, 2005 at 13:50
well done maria ~ i only wish that every complaints procedure came out the way yours did unfortunately this seems to be rare and everyone else i have spoken to with regards to their trusts nothing was ever as productive as yours seems to be ~ i hope they keep to their words and get everything in place ~
speak soon
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Re: MRSA in the lungs
Reply #17 by Maria
Posted: September 9, 2005 at 17:08
Brilliant news - and very heartening to see that at least one trust is willing to listen and learn. Let's hope others begin to follow suit and recognise that MRSA Support can benefit them - after all, we have first hand experience of the problems surrounding MRSA from both the patient and relative perspective, and by working together could make a difference for the future. Sadly too many just act on the defensive without really listening, but the fact that UBHT are listening surely gives us all hope that others could and should follow suit?
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Re: MRSA in the lungs
Reply #18 by Bev
Posted: September 9, 2005 at 17:26
hee hee i think maria in reply #17 is phip having a blonde moment
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Re: MRSA in the lungs
Reply #19 by Maria
Posted: September 9, 2005 at 23:42
Bev, yes, don't we all suffer from blonde moments from time to time - makes a change from being a dizzy brunette!

As far as the group is concerned I think we need to build on this and hold up this approach to the poor performing Trusts who are not listening.

We need to show the Government too. They have banged on about sharing good practice in the plethora of guidance they brought out in the run up to the general election campaign. Now its their chance to get behind us and use their power and resources - good practice is not funded by fresh air - so time for action. They can act now they don't have to wait for the Queen's speech and a Hygiene Bill.

They have made limp and vague illusions to screening patients prior to admission and when they transfer to care homes today. Then they say it is not practical to screen prior to admission. If the Netherlands can do it and have lower rates of infection, then why shouldn't we.

The admission from UBHT that cleaner hospitals are needed to reduce infection is one you will not hear from the Government. Its time for them to get real and own up to their responsibilities.
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