C.difficile community shares stories

One of the consequences of our stories in the paper and our coverage online is that families of victims of C.difficile have learned that they are not alone. This thread of the forum is for these families, and others interested in the ongoing story.

Comments

[anne williams]

i have had c-diff and i would like to know if i am now a carrier of it

[Paulette]

C diff is still with us. My mother has been a patient at HHS five times in the past two months and I believe she contracted C diff on her fourth visit. She was sent home and readmitted two weeks later very ill. "Isolation" is a myth contrived to make patients and family feel "safer." Staff come into the rooms without gowns. Phones aren't cleaned and bed linens aren't changed. C Diff is a sad commentary on health care in general. Nurses and doctors are overworked and support staff are overwhelmed. Yet, senior management seem to remain untouched by the chaos that surrounds them. I don't have answers but I truly worry about our healthcare system.

[Robert]

A fundamental key in addressing infection issues is in the establishment of an effective broad based communication process that allows all health care provider partners (LTC, Home Care, Public Health and Hospitals) to trend, document, report and implement improvement strategies collectively. C Diff or SARS or MRSA is not a hospital only issue. However the lines of communication are often non existant as the patient migrates throughout the health care system. The LHIN needs to champion a collective universal information sharing and infection control process regardless of which place the patient is in at the moment.

[Evelyn Dawson]

Why don't we use bacteriophages on these bugs? What is our problem?

Bacteriophage
From Wikipedia, the free encyclopedia

This article is about a biological infectious particle; for other uses, see phage (disambiguation).

Structure of a typical bacteriophage
A bacteriophage (from 'bacteria' and Greek phagein, 'to eat') is any one of a number of viruses that infect bacteria. The term is commonly used in its shortened form, phage.

Typically, bacteriophages consist of an outer protein hull enclosing genetic material. The genetic material can be ssRNA (single stranded RNA), dsRNA, ssDNA, or dsDNA between 5 and 500 kilo base pairs long with either circular or linear arrangement. Bacteriophages are much smaller than the bacteria they destroy - usually between 20 and 200 nm in size.

Phages are estimated to be the most widely distributed and diverse entities in the biosphere.[1] Phages are ubiquitous and can be found in all reservoirs populated by bacterial hosts, such as soil or the intestines of animals. One of the densest natural sources for phages and other viruses is sea water, where up to 9×108 virions per milliliter have been found in microbial mats at the surface[2], and up to 70% of marine bacteria may be infected by phages.[3]

They have been used for over 60 years as an alternative to antibiotics in the former Soviet Union and Eastern Europe.[4] They are seen as a possible therapy against multi drug resistant strains of many bacteria.

[Anon]

The lawyer for the C diff class action case is Stanley M. Tick Q.C. “ 108 John St North, Hamilton, ON – L8R-1H6
Bus \ 905-523-6464

[Diane McGowan]

I was a surgical patient for ruptured appendix at JBMH in early Jan 2007. I was recovering after the surgery when, unexpectedly, my heart stopped. My heart was checked prior to surgery because I had a mitral valve replacment with CABG x2 the previous year. No heart problems were detected. They revived me (I woke up in ICU) and subsequently, I contracted C diff. They told me this was due to antibiotic treatment. I was discharged, without medication, in March 2008, but was back in hospital a week later, still with C diff. I was then discharged in April, with a prescription for medication for 30 days. I eventually recovered, but in May started to lose my hair. It has now come back, but I still do not walk very well and am very weak (1-1/2 years later). I am 68 years old and lost 40 lbs with the C dif. This has (unfortunately) also come back.
If you can provide it, I would like to know the name of the lawyers handling the Class Action Suit so I may contact them. I have never heard from the hospital since.

[Anonymous]

Now its scabies and the information in the Spec and we are hearing on CHML is conflicting....

[bob]

We had twin girls in welland hospital on feb 2007 in Welland Ontario,
when i wanted to go from second floor to sixth,, in was told i could not go up there because they had a virus on that floor ..

dumbfounded ,, i asked ,,, where are the warning signs ?
why hasen't anyone been told .. why was it not in the paper?
My wifes room was terrible
old paint , dings and scratches on the wall and dirt that everyone could clearly see.

Now almost two years later,,,,,we have c-difficile in the hospital ..
go figure ,,
it took two years to advise the public of welland , that there was an outbreak .

when i asked the electritian about hireing painters to paint hospital ...he informed me ,,, that he was the painter, electritian , floor cleaner ..

[Anonymous]

The following letter has been faxed to the addressees June 28, 2008. It is hoped that an inquest will allow standing (representation) for the families in the Burlington community affected by c-diff.

Estate of Eva Bourgoin – Deceased
308-1425 Ghent Avenue, Burlington, Ontario, L7S 1X5
Tel. 905-639-5684

June 28, 2008

Dr. Lauwers
Associate Deputy Chief Coroner
By Fax

Hon. Minister Rick Bartolucci
By Fax

Dr. A. McCallum
Chief Coroner of Ontario
By Fax

Mr.R. Stevens
Son of Eva Bourgoin
By E-mail

RE: LETTER FROM DR. A.E. LAUWERS DATED JUNE 27, 2008

This is to confirm that the letter of Dr. Lauwers received by fax on June 27, 2008 and dated June 27, 2008 has been discussed with Mr. Roy Stevens and the date of July 14, 2008 and time of 8:00 a.m. selected for the hearing of the Section 26 (1) request for an inquest into the death of Eva Bourgoin. We would appreciate sufficient notice of the place of the meeting and how Mr. Stevens joins the meeting by teleconference to allow the hearing to be as effective as possible.

This letter is also addressed to Hon. Minister Rick Bartolucci, the Minister responsible for the OCCO and the new Chief Coroner of Ontario as Dr. Lauwers letter has responded to our need for a request for an inquest being considered under Section 26(1) but it has not respondend to the family and community’s other needs addressed to the Hon. Minister and Chief Coroner of Ontario related to the death investigation..

As I am sure you all have reviewed the correspondence forwarded after the appointment of Dr. McCallum I will not repeat myself. However, given:

1. the overwhelming evidence in the Estate files of the failure of the OCCO to act in accordance with its mandate in terms of the investigation of the death of Eva Bourgoin
2. the failure of the Minister to investigate why the OCCO is not acting in accordance with its mandate when dealing with the death of Eva Bourgoin an elderly person with long term disabilities
3. the relationship of the lack of compliance to the mandate of the OCCO to a significant c-diff crisis in our community that is responsible for at least 62 deaths which immediately followed the death of Mrs. Bourgoin who had symptoms related to c-diff that went untreated and untested as to cause by anyone including the initial investigating coroner who was also the Chief of Staff of the hospital where she died.
4. Mrs. Bourgoin’s primary disability (diagnosed as paranoid schizophrenia) is listed on the investigation of death form as contributing to her death and yet paranoid schizophrenia is not a diagnosis that produces fatalities. As a person with disabilities she and her family have the right to expect the investigation of her death is treated no different to a younger person who was not a person with disabilities (i.e. those presently considered by the Goudge Inquiry).. And, failure to abide by the legislation that covers the treatment and upholding of rights and dignity of persons with disabilities properly investigated in relationship to the cause of death
5. The information the family has that the investigation is closed and there is no coroner heading up the investigation who we can address questions to

we would respectfully request that Dr. McCallum, the Hon. Minister and Dr. Lauwers sit down and consider and report back to us before noon on July 4, 2008 (we are away from July 5, 2008 to July 8, 2008 inclusive)

a) is the investigation into the death of Eva Bourgoin closed
b) if it is closed how do we ensure it is re-opened based on overwhelming evidence in our files of lack of proper investigation
c) if it is not closed who is the coroner allocated to the investigation team
d) when, prior to July 14, 2008 can we sit down with the coroner who has responsibility for the investigation of the death of Eva Bourgoin and review the concerns with regard to this investigation that certainly affects our ability to properly formulate our request for an inquest with the same access for Mrs. Marsden and Mr. Roy Stevens and the same recording of the meeting as has been put in place for the meeting now scheduled for July 14, 2008.

I really do not wish to hear that this is short notice given the family’s Herculean attempts set out in the files of the Minister and Chief Coroner to have a) to d) put in place since well before Dr. Cairns finished his report in January, 2008.
Respectfully,

Anne Marsden (Mrs.)
Estate Trustee – Estate of Eva Bourgoin – Deceased
Auditor and Advocate for the Rights and Dignity of Persons with Disabilities

c.c. David Simpson, Pyschiatric Patient Advocacy Office
Schizophrenia Society
Affected Families C-Diff Burlington

[Brian]

They should hold hospital staff that knowingly hold back info or intefere or delay treatment where innocent people have died to be criminally responsible and issue them huge fines and mandatory jail sentences of many years.

[Anne Marsden]

Joan Walters article today states: "Since February, while the panel investigated, McGimpsey ordered unannounced hygiene inspections of hospitals," That is one of the things we never do in Ontario, instead we announce everything including Accreditation Visits. That is why things will never change regardless of the shocking infection control standards which include hygeiene (feces on pillow cases and patients not getting properly cleaned up, filthy bathrooms etc.)will continue to be a problem at Joseph Brant hospitals in the present building and in a new hospital which should not be built until unannounced inspections show an impeccable record of cleanliness and not what we have been getting for the past decade or so.

[Anne Marsden]

Posted by: kathryn kennelly : Kathryn can you please contact watching@cogeco.ca I would like to talk to you about the issues you raised that I hope to address at an upcoming public meeting.

Anne Marsden

[Anne Marsden]

Did any of the doctors at Joe Brant try simple yogurt or acidopholus (sp)?

Posted by: kathryn kennelly | May 20, 2008 at 10:12 PM

When my mother was in Jo Brant in 2005 and on antibiotics I insisted she be on acidophylis and she was fine. 2006 they refused to give her the acidophylis she lasted 6 days and then had 10 severe bouts of diarrhea that went untested and untreated and was dead in less than 24 hrs. Anne

[Mike Harvey]

Looking for lady named Andrea that posted the note listed below, please contact my email at michael.harvey@glentel.com

Posted by: Andrea | May 27, 2008 at 01:08 PM

Looking for people affected by Jo Brant C. Diff loss of family member to initiate class action suit against hospital for negligent conduct.
Please email me if interested or have any knowledge if current suit in progress.

[Julie]

All these unfortunate stories and events concerning the C Diff has always saddened and scared me and my family and we never thought it would happen to us. My daughter is 2 and half, she has obstructive sleep apnea, so we needed to get her adenoids and tonsils removed. On the waiting list at ENT department for 4 months we finally scheduled her surgery May 14, 2008. The surgery went well, we stayed one night at McMaster Children's Hospital. Thinking the worst was behind us we were discharged the next afternoon. Perscribed antibiotics and pain relief. Struggling with Hannah for two days to drink and eat she was lithargic and was dehydrated. We rushed her back to MAC ER and they put her on IV and thinking it was an infection, gave her more antibiotics. We were admitted back into the children's ward and within a couple hours Hannah had a massive explosion of diarrhea. The story is much to long to explain, but after 6 days in the hospital, we learned that Hannah contracted C. Diff. We were in shock, and still are. Looking for answers why this happened. She was in so much pain. She came out of the hospital looking like a child from a third world country. Even today she is still falling over because she is so weak.
They explained that c.diff is in many children, and my daughter is a carrier of c.diff.. Maybe she is....I don't know but I am looking for other stories of people or children that have contracted c.diff at MAC this month. All I know is usually your intuition is right....most of the time and as I sat at the hospital in my yellow doctor smock and rubber gloves for hours looking at my sick child and there right in front of me....was the cleaning lady clearing out our soiled linens and discovering she was the same lady that brought Hannah her breakfast.

No two year old should get thier tonsils out and end up with c.diff.

I am looking for other people stories,

DOES MAC HAVE A PROBLEM??????

Looking at my daughter.....I think so.

[carole partington]

In this mornings article the regional coroner's office made the statement that they had no record of requests for autopsies from the families of the 62 killed during the Jo Brant outbreak. My mother was one of the ones killed but we were never informed by the doctor or the nursing staff that she had such "a superbug".
Now that I think about it, they did do an autopsy on her because she had fallen and broken her hip. All hip fractures need and autopsy to check for physical abuse....isn't that ironic!
I remember the phone call telling me she had died peacefully at 5:00am.
I had left a note for the nurse to put with her file to call me at the time of her death so I could come in to have one last visit with her. The note never made it to her file. The last visit I had with her was in the funeral home 3 days later.

[Andrea]

I have suffered from c. diff since Jan 2008 and to hear these stories is absolutely horrifying..

[Mike Harvey]

Looking for people affected by Jo Brant C. Diff loss of family member to initiate class action suit against hospital for negligent conduct.
Please email me if interested or have any knowledge if current suit in progress

[PC]

It is unfortunate that Joe Brant has suffered the C. diff outbreak it has. Antibiotics are typically the cause as they given for certain infections and kill the offending bacteria as well as "good bacteria". However, there is also community acquired C. diff which is unrelated to specific Abx exposure.

To the commenter who raved against Fluoroquinolones, you need to stop searching google for your health information. Fluoroquinolones are in-fact first line for complicated UTI's (ie catheter related UTI's) as well as complicated CAP or VAP. Are you aware of the resistance date for the Burlington/Hamilton region? Simple penicillin's such as amoxil have resistance rates as high as 40%. So when we choose antibiotics, we have many issues to factor in and just don't choose what the internet states.

[Tracy]

My father contracted c. diff at JBMH in 2006 while recovering from an amputation due to diabetes. It wasn't discovered until he was sent to Chedoke for therapy. As a result of the c. diff. his system had to be flushed out placing enormous strain on his kidneys. He suffered a heart attack and now requires dialysis 3 days a weak. Dialysis is another issue as he needs to travel to Hamilton and the Darts program can't deliver him in bad weather. Chedoke did not have a history of c.diff. and wasn't too pleased they were exposed. So hereès a though. A patient contracts the illness at JBMH and then exposes Chedoke and McMaster Hospitals to the virulent illness. Not the mention of the cost to our Health Care System. I understand it is very difficult to rid a hospital of c. diff. as it can remain airborne for months. It just seems money is not directed to areas of the Hospital that needs it. Burlington is treated second rate when it comes to health care. We are still growing but we have only one small and out dated hospital. This is not to bash the staff at JBMH as I am concerned for them and their families as
well. Something like this creates a chain reaction of costly events both for OHIP,the individual, and their family. Just know there are worse things than c. diff. but that doesn't lessen its effect on us all!

[kathryn kennelly]

Did any of the doctors at Joe Brant try simple yogurt or acidopholus (sp)?

[Deborah & Keith Powell]

Our mother went into JBMH in Dec. 2006, contracted pneumonia first and had started to recover when she got c diff, and passed away Jan. 13/08. Yes, she was 83 years old and had a chronic illness. But she was recovering until she get the c diff. When she got it, the sign was put on her door to use gown & gloves, which we did. The nurses on her ward told us we did not need to gown up as we were not in direct contact with feces.(?) We helped her on to the commode chair cause nurses were too busy, we tried to feed her etc. OF COURSE we were in contact with something. Just before she passed away, in a meeting with her dr. and nursing staff they tried to convince us "she had given up" due to her age and previous illness. They flat out told us the C. diff. was not the reason. We were talked to and treated like idiots. Then 16 months, almost to the day she died, we get a phone call at 7 p.m. to inform us that as the result of this investigation, it was determined that c. diff "strongly contributed" to the death of our mother. What a slap in the face!!!! To be told this way, (because the hospital was releasing the info to the media the next day and wanted to advise families first). after all this time and then to just say "We are sorry, but it happened." And then listening to the comments by the Hopital Administrator, sounding like he had really done something great by finally admitting there had been a problem but it was now under control! The families of all the people who died should have been shown more respect and at least been offered a face-to-face meeting and an apology for just assuming that elderly people "just give up" and die when they get ill, especially when the illness is caused by the very place they expect care. JBMH and our Ministry of Health both have a lot to answer for. George Smitherman, you should be ashamed, C. diff will be a reportable disease by the end of the year? It should be reportable NOW.

[cg]

C.difficile
Who prescribes the antibiotics? The doctor.
Why are they prescribing as first line antibiotics the class of drugs known as fluoroquinolones for mild conditions- when no antibiotic is required or a mild pediatric drug like Amoxicillan would suffice.
Fluoroquinolones like Levaquin, Cipro, and others in this class have a high affinity for C Diff. Patients do not request these antibiotics by name, but rather are prescribed them by their doctors! they are inappropriately overprescribed by doctors daily without regard to risk. This results in escalation of resistantcy issues, adverse drug reactions, and media pieces that blame the patients for overprescribing. It is the prescribers that should have accountability to not prescribe when not needed or give less potent antibiotics which would suffice for mild conditions, and only use Fluoroquinolones as last resort for serious infections for which they were designed due to the risks of not only C Diff, but Tendon Rupture, Peripheral Neuropathy, Arthalgias/Myalgias, Hepatobillary, Cardiac, Central Nervous System adverse events that can be prevented when a Physician properly prescribes.

[Joyce should go to Jail]

As Regional Chair she did Nothing Out Loud to let the Public Know about Going's on