By Steve McMullen
(The following account was originally sent to Wayne Gates, a Niagara Falls city councillor and president of Local 199 of the Canadian Auto Workers, on July 19. It was written by Steve McMullen whose 75-year-old mother Marion McMullen is still battling a C. difficile outbreak and, as of the July 28 posting of this account, was back in the St. Catharines General Hospital emergency room area again waiting for a regular hospital bed. Both Wayne Gates and Steve McMullen have agreed to share this account with Niagara At Large, believing that the public at large needs to be informed of what patients and their families are going through with this deadly superbug.)
Dear Mr. Wayne Gates –
I would like to thank you for organizing the rally (near the Greater Niagara General Hospital site in Niagara Falls) on July 6,2011, bringing
to light the serious nature of the C. difficile outbreak.
Marion McMullen still battling C. difficile superbug. Photo courtesy of McMullen family.
I was out of town so I was unable to attend the rally but my family have seen first hand the devastating affect that C. difficile has had on our 75-year-old mother.
My mother, Marion, had finally been properly diagnosed with C. diff. this past June 15 although she had been fighting the symptoms of this since she was discharged from the St Catharines General Hospital on May 16th after her colon surgery on May 6, 2011.
We are all aware now that this outbreak had started back when she
was initially in hospital after her surgery (May 6-16). The following is what
has happened to her since.
She was re-admitted on May 18 after she and her family could not help
her control the diarrhea and other issues she had after her release.
She was placed in a ward room and after a few days was moved to a
room with one other person after one of the three other patients was said to have VRE.
She was in there for another eight days and released again, although her
symptoms had not changed. The next night we had to take her back to
emergency, she was diagnosed with dehydration due to the diarrhea and
sent home again the next morning. She was never told she could have any
kind of virus that she could pass on to her family or anyone else while she
was out in the community.
My mother continued to have the problems. We read the (St. Catharines) Standard every day and were aware that there was an outbreak and people were dying. After another 16 days of dealing with this at home and continuing denials from her surgeon that she didn’t have C. diff., I had had enough of our inadequate health care system. We were basically watching our mother die at home and nobody was doing anything. I phoned the surgeon’s office and said something had to be done as I would no longer sit back and watch my mother deteriorate and die at home while nothing was being done by our health care system.
The receptionist said to take her again to the emergency and the surgeon
would see her. She was placed in a consultation room in the emergency
with no washroom or call button and had very little care looking in on her.
She had to deal with her diarrhea and colostomy bag in the public
washroom in the hall.
The next day a nurse questioned why she was using that washroom. What choice did she have? She was continuing to be told she did not have C. diff. and just had complications from her surgery. Why, after the fourth time of having her in the hospital for these same symptoms over the last five weeks, they did not isolate her with her own washroom in the emergency is beyond me. Do they not look back at her history and see there is a good chance she had it?
The following day, they did swab testing which they had never previously
done and admitted her again after 24 hours in the emergency. The following day (June 15), those test results came in and she was finally diagnosed with C. diff. They finally found a bed for her on the fourth floor and then moved again the next day to the third floor where they had isolated all those cases.
My mother spent another nine days in hospital and released saying she was cleared, although her symptoms still continued. We took her to her family doctor a few days later, who had another culture tested, which came back positive, meaning she still had C. diff. She was put back on antibiotics again.
She continues to have the same symptoms. Her family doctor said she would not be cured by any antibiotic and needs to keep hydrated, and try to get some kind of nourishment in her, which is next to impossible.
We are basically left with crossing our fingers and hoping that she gets
through this without dying. Dealing with what my mother has been going through, I have no doubt as to why we have an outbreak of C. diff and 26 people have died.
The Niagara Health System administration needs to move quickly to change how they deal with these outbreaks and how they admit to there being one. I feel that if the NHS had made the C diff. outbreak public sooner, the outbreak consequences and number of deaths would not have been so severe.
The frontline hospital workers are not to blame for this outbreak, but
the inaction by the administration of NHS hospitals raises questions. If it is
a matter of money for more testing, cleaning or staff, this needs to be
addressed to help prevent this.
I once again thank you (Wayne Gates) for organizing the July 6 rally. This issue needed to be brought to the forefront. To the Ontario Hospital Association president (Tom Closson), who questioned why our regional and provincial politicians would be protesting the NHS’s handling of this outbreak, I ask this. How would he feel if it was his mother or himself who contracted this deadly virus while receiving what we thought was routine surgery at our local hospital? That is why we elect our regional and provincial politicians, to speak on our behalf for matters that concern their constituents. If this doesn’tconcern him, I don’t know what would.
I just hope that after all the investigations that this type of outbreak will not happen again. Our community deserves better from our NHS system and the administration should be held accountable for how they handled it.
I realize that having C. difficile is not uncommon in society, but knowing its
affect on the elderly and that the number of cases and the number of deaths that started after entering an NHS site, the number of deaths, they had to have known an outbreak had started in their facilities and acted sooner then they did.
Knowing now that the province tracks all hospitals for numbers of
reported cases, was this how the NHS tried to stay under the radar, by
denying to report an outbreak?
I read that healthcare professionals have finally been brought in from
the province, who wants to interview the families of patients who have
died. Why not interview the patients who have dealt with this and
is to hear what they know about their loved ones illness and circumstances.
I’m glad this has finally been done, but feel that rallies like yours are the
only thing that helped push this to being responsibly dealt with.
No one has ever asked my mother or her family any questions about her
C. diff diagnosis even though she seems to have gone through this ordeal
in the NHS throughout this outbreak. Maybe they don’t want to have to
count her as a former patient who is stricken with this disease. We have
had only denials up until recently.
My mother has kept an extensive diary of her story and I would be more
than willing to share her ordeal with investigators now, rather than after an inquiry into the deaths of all the C. difficile patients.
Steve McMullen is a resident of St. Catharines, Ontario who is sharing his family’s story out of concern for the way the Niagara Health System is dealing with the C. difficile outbreak at its Niagara hospital sites.
(Niagara At Large encourages you to share your views on this story in the comment boxes below and we continue to ask you to encourage your friends and associates to become regular visitors to the news and commentary posted on this site at www.niagaraatlarge.com.)
Niagara At Large 
As soon as the symptoms appeared she should have had a stool culture done, particularly in the view that there was an outbreak going on in the area. This is inexcusable as was the inappropriate follow up.
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God bless you and your family. My heart breaks for you all, and particularly your poor mother. I hope this doesn’t sound callous, but I honestly would encourage you to contact a good class action suit lawyer (likely out of town and maybe from Toronto as you don’t want any firms with attachments to the NHS). I normally don’t support lawsuits for people making honest mistakes, but this whole C.difficile problem is created by a long list of negligence….and maybe the only way the NHS and province are going to learn is to have a huge lawsuit launched. I am so glad to hear your mother kept a thorough diary. This will be useful. My deepest sympathies to you and your family.
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It amazes me that the medical profession will stick with medication that they know will not work on these super bugs when many are well aware of a natural substance to which all of these super bugs have no resistance for. Chalk another one up for Big Pharma.
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Steve, My thoughts are with you and for your mom, my old friend from RV camping days. Keep up the fight against the seemingly-inept medical community that has been inflicted upon us. Their main concern is “to put this behind us and move forward.” Bah.
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We are friends of Marion’s – I have known her for more than 40 years! We have been concerned about her, and are disturbed that this has happened to her. Marion is a stalwart fighter and has overcome many odds. We are fully behind you in your struggle for your mother’s health.
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Our prayers are with you and all the families keeping bedside vigils fearing their loved ones will be the next NHS statistic.
CDiff is only symptomatic of the larger problem that the HIP created. Until it is reversed more problems will surface.
Thanks to you and people like Councillor Morocco for speaking out . The climate of fear has changed and Doctors, staff and families are now standing together to demand systemic change, Its time for the elusive Board of Trustees who are supposed to be Community representatives to be heard from.
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Hello Steve: We too have known Marion for many ears. Your and her story is one that certainly demands change. How helpless this situation must feel for your family and for any of us who would or are needing hospital care.
Marion has always been determined to stay well. Her recent story removes hope and faith in our local health system. Having recently followed the hospital care of a loved one, paper work seems to take precedence over both common sense and responsible action in patient care. Much could be said further to this. Our family remains hopeful and expects that solutions and positive directions develop now in the prevention, diagnosis and care for patients. We support your efforts.
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As someone who has had c. difficile not once, but twice, and each time for 6 months, I have learned considerable about this particular anaerobic bacteria–and nothing good. I had more than one negative test while suffering with this bacteria and that, I believe, is why it is called difficult. It is difficult to diagnose. Lots of bleach and frequent cleaning ensured no one in my household became ill. Managing to stay hydrated kept me out of hospital (albeit, I did lose 30 lbs the first time). Also, I had an excellent infectious disease specialist–and that, I believe, made all the difference. I wish you well and hope you overcome a very dangerous bacteria.
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this story needs to be given to the supervisor looking over the nhs.
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After being admitted to hospital April 27, with pneumonia, my mom spent 7 weeks in hospital. She is 81. Once her “pneumonia” was getting better they moved her to a re-hab ward where they were working on getting her stronger for her return home. She lived alone and was walking her dog everyday and living a normal life. She was discharge June 7, and several hours later I had to call an ambulance as she was vomiting, and defecating herself. Upon admission to Hospital she had a pulse rate of about 44 and her bp was 70/46. WE mentioned the C. Difficile and she was tested. One week later she was released again and the day we got home we found out in fact she had come up positive for the bacteria. June 30th, I received a call from her PSW stating she wasn’t well. When I went to see her she was disoriented and defecated all over the house and was soaken wet with urine. I took her to my house where I kept her for the night and then in the morning she went back to hospital. Again C. Difficile and another 2 weeks in the hospital. 2 more weeks and my mom called me to say she had diarhea. Hard to believe, but I went over and simply said we are going to Emerg. Again she was admited and test positive for C. Diff. By this time my mom is 84lbs and there is nothing left to her. Finally her meds were changed from Flagyl to Vancomycin. Again she came home. On August 22, I spoke to her on my way to work and she seemed bright spirited and happy. Later that day I couldn’t get hold of her, so I went by her house. I found her in bed and she had passed away. I called 911, and they did their best, but it was no good. Her heart had an arrythmia or she’d had a stroke the coroner said. It wasn’t the C. Diff. that killed her. (ya right). There is a hole in my heart a mile wide and I cannot get the last image of my mom out of my head. She did look peaceful. But I am positive if she had’t gotten this horrible thing in the first place she never would have passed away. She was an identical Twin and mom, a gramma and the most lovely human being. What do I do from here!?>
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My father died last week after contracting C-Diff, seemingly as the result of being transferred from one hospital to another. He went into the Welland hospital with a minor heart attack and got shingles, but was sitting up and growing stronger, eating food, and chatting with everyone, and then they transferred him to Fort Erie where he got sick with C-Diff and died within three weeks. It was excruciating to watch him waste away, lose his power of speech, and suffer in this horrible fashion. I was beside him when he passed away and feel so robbed of so many opportunities to love him. He never should have died.
(Niagara At Large is bending a rule here on requestion full first and last names here due to the tragic relevance of this comment to the larger community.)
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I was telling my mom’s story to a new employee I work with. She has a friend who is 50 and hasn’t been able to work for 9 months now after contracting C. Diff. Her case was contracted in the hospital after having had surgery. Well, she was in the same hospital as my mom if we do the math they were there at the same time. My mom didn’t make it. I found her at home August 22/11, after battling this bug for months and it depleted her and wore her down to nothing.
November 7, 2011 her identical twin passed away after complications from a twisted bowel. Forever, missed, Jean and Joan. This will be a difficult Christmas.
So sorry to hear about your father. It is a very difficult time and thing to watch.
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So many poor health outcomes and families who lose loved ones to the deadly CDiff. I encourage you to share your NHS stories with the office of Ombudsman Andre Marin. They have an open file and will respond to your situation. info@ombudsman.on.ca
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