C Diff Foundation and C diff Survivors Alliance Network Winter 2017 Bulletin

 

Greetings from the main office of the C Diff Foundation and the C diff Survivors Alliance Network located in New Port Richey, Florida.  As we close 2017 we mark the 5th anniversary of the two organizations. We want to share with you a summary and reflection on this year’s events and campaigns moving our mission forward and message delivered worldwide. The mission and promoting C.diff. Awareness has been shared this year alone with over 81,453 listeners during Season III on C. diff. Spores and More Global Broadcasting Network (www.cdiffradio.com),  5,000+ visitors during global events, 9,600+ residents and business owners throughout villages and communities by our dedicated volunteer patient advocates, over 1,000 clinicians received up-to-date data expanding their knowledge during workshops and local symposiums offered worldwide, 3,000+ incoming national hot-line calls, with thousands of e-mails seeking information.

After each event, workshop, meeting — we thank the individuals for the five years of opportunity to provide the life-saving data educating and advocating for C. difficile infection prevention, treatments, environmental safety and support worldwide.  The mission of the C Diff Foundation is the momentum of charity that has proven effective and grown over the past five years.  A single act of charity grows into more and greater charity worldwide.  The work each member of the C Diff Foundation with the hundreds of Volunteer Patient Advocates, promote the Foundation’s mission which never stops with a single act.  Instead, it builds, it grows, and it expands into an exponential impact of good in the world helping to save lives.  We thank you for your continued support and encourage you to continue your journey, proposing three verbs important to the C Diff Foundation and the C diff Survivors Alliance Network in general.

The first of these verbs is “to promote” C.diff. Awareness. It is the first step that opens doors in educating individuals, clinicians, communities in learning more about this life-threatening infection which causes a great amount of pain and suffering around the globe.  It is essential and it is the compass in reaching shared goals.

The second verb is “to heighten awareness” across the nation to continue proclaiming November Clostridium difficile infection awareness month. The Governors proclaimed November C. difficile (C.diff) infection awareness month in 2017 and we encourage them “to welcome” this proclamation in 2018 with more than a yearly executive order of greeting or inviting their residents to take notice.  We look forward to working with delegates, with your support, to make this proclamation statement nationwide and welcome the importance of the time, education, programs, and agenda in place addressing this life-threatening infection.  The C Diff Foundation advocates and supports the individuals and families suffering during and after being treated for a C. diff. infection.

Finally, the third verb that the C Diff Foundation and C diff Survivors Alliance Network propose is “to go.”  Here we are all challenged to do something with the gifts we have been given and what we are able to do.  With the unity of members with volunteers with the patients, families, and clinicians we can make a difference with enthusiasm and simplicity to get up and go.  We can do for others what we could not do for ourselves during our illnesses, during the isolation, during the losses, during the pain and suffering.  As members of the C Diff Foundation we know that our enthusiasm  for our mission is the desire to bring awareness and
promote C. difficile infection prevention, treatments, environmental safety and support worldwide.  We witness the change by delivering the data and information within villages,  through major cities and  small communities — it is only by taking this path that we gain satisfaction knowing that the news is delivered with enthusiasm “to promote, to heighten awareness and to go” with the members and volunteers in the C Diff Foundation and C diff Survivors Alliance Network.

We are truly grateful for your continued dedication, efforts and support and thank you again for making this year’s November anniversary such a special occasion through the growth and advances made worldwide.   Let’s carry the mission into the New Year, carving new paths to witness the decline in newly diagnosed cases of Clostridium difficile (C.diff., C. difficile) infections and saving lives worldwide.

“None of us can do this alone ~ All of us can do this together.”

 

 

C. difficile Infection (CDI) It’s One Day, One Hour, And One Step At A Time

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Health, defined by the condition of being sound in body, mind, or spirit; especially :  freedom from physical disease or pain.

It can’t be bought, is usually taken for granted, and not easily restored.

 

Being diagnosed with a Clostridium difficile infection (CDI) or better known as C. diff., wasn’t too terrible.  The directions were received from the doctor, medication was ordered and picked up at the pharmacy and recovery was right around the corner.   So we thought.

It’s not an infection  I want to talk about at the bowling alley with my friends, the family doesn’t understand it, not too sure the doc fully understood the road I was about to travel either.

The countless hours began sitting behind the computer searching, reading, freaking out at the copious amounts of negative words describing this bug.

So now I have a pile of information, a sick – sick stomach, bottles of meds, a few bills attached, the jumbo pack of T.P., and an on-line order of products that kill the spores that live in the fecal matter that cause the nightmare.

How in the world did I get this?  Antibiotics?  Out in the community?  While visiting a friend in the healthcare building?  Maybe at the local gym?  Off a contaminated surface somewhere?

The possibilities are many.

It took over three months and three different meds to break the cycle.

Not what they call infected anymore but you tell my G.I. system that.  Still living with the now and then symptoms and upsets.  Never sure when the 100 yard dash is going to take place and always careful about eating out at social functions.  Only four weeks post-C. diff. but I wanted to share a few words with everyone going through this.

Don’t give up and speak up because as the old saying goes the squeaky wheel gets the oil.  Thanks to the C diff Foundation for the information and support.  They understood the pain and suffering when others shunned me and walked away.

Steve C.,   Survivor

 

C Diff Foundation Opens a New Avenue – C. diff. Nationwide Community Support Program

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The C Diff Foundation introduces the                                                                 C. diff. Nationwide Community Support (CDNCS) program beginning in November for patients, families, survivors and for anyone seeking information and support.

C. difficile (C. diff.) infections caused almost half a million infections among patients in the United States in a single year, according to a 2015 study by the Centers for Disease Control and Prevention (CDC).

In addition, an estimated 15,000 deaths are directly attributable to C. difficile infections, making them a substantial cause of infectious disease death in the United States. (See note below [i].)

As of 2015, there is an absence of professional C. diff. (CDI) support groups in America. The                         C Diff Foundation has pioneered a collaborative plan and developed support groups in a variety of availability and locations to meet the needs of individuals seeking C. diff. information and support.

“We found it to be of the utmost importance to implement this new pathway for support and healing after speaking with numerous patients, family members, and fellow-C. diff. survivors,”

The C Diff Foundation now speak for the thousands of patients within the United States who, each year, are diagnosed with a C. diff. infection. This growth, in part, reflects the value C. diff. support groups will provide, not only to patients, their spouses, and families who are living with and recovering from a C. diff. infection, but also to the countless number of individuals who will become more aware of a C. diff. infection, the importance of early detection, appropriate treatments, and environmental safety protocols. There will also be Bereavement support group sessions for  C. diff. survivors mourning the loss of loved ones following their death from C. diff. infection involvement.

Beginning November 2015 the CDNCS groups will be available to all individuals via: Teleconferencing with some groups advancing and adding computer application programs in 2016. CDNCS groups will provide support and information  to 15 participants in each session.

The CDNCS program sessions will be hosted via: Teleconferencing with leaders and fellow C. diff. survivors  from Maryland, Florida, Missouri, Colorado, Ohio, and Oregon.

The Colorado CDNCS group is offered at a public venue and will be hosted in Arvada, Colo. every third Thursday of each month, beginning November 19th. The Meeting will start at 5:30 p.m. and end at 7 p.m lead by a C Diff Foundation Volunteer Advocate and C. diff. survivor  Mr. Roy Poole.

To participate in any CDNCS group being offered during each month, all interested participants will be asked to register through the Nationwide Hot-Line (1-844-FOR-CDIF) or through the  website http://cdifffoundation.org/ where registered individuals will receive a reply e-mail containing support group access information.

  • The Support Registration Page  will be available on November 1st.

The C. diff. Nationwide Community Support group leaders will provide a menu of topics being shared each month on the C Diff Foundation’s website ranging from Financial Crisis Relief, Bereavement, Nutrition, Mental Health, to C. diff. infection updates and everyday life during and after being treated for a prolonged illness. Both Community based sessions and Teleconference sessions will host healthcare profession topic experts

There is evidence that people who attend support group meetings have a better understanding of the illness and their treatment choices. They also tend to experience less anxiety, develop a more positive outlook, and a better ability to cope and adapt to life during and after the treatment for C. diff.

There is a Purpose:

A diagnosis of a C. diff. infection is unexpected and almost always traumatic. As a result, it is not uncommon for newly diagnosed patients to experience a wide range of emotions including, confusion, bewilderment, anger, fear, panic, and denial. Many people find that just having an opportunity to talk with another person, who has experienced the same situation, to help alleviate some of the anxiety and distress they commonly experience.

Individuals also find that they benefit not only from the support they receive, but also from the sense of well-being they gain from helping others. It has been said “support is not something you do for others but rather something you do with others.”

“None of us can do this alone – all of us can do this together.”

Follow the C Diff Foundation on Twitter @cdiffFoundation #cdiff2015 and                                        Facebook https://www.facebook.com/CdiffFoundationRadio.

Note/citation: [i] http://www.cdc.gov/drugresistance/biggest_threats.html

C. diff. Survivors Shared Their Journey Through a C. diff. Infection (CDI) On C diff Spores and More, C diff Radio

 

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What’s new in the C Diff Foundation?

Let us introduce you to the first internet radio talk show dedicated to C. diff. and more……

C. diff. Spores and More”

 

On  Tuesday, May 12th  C diff survivors shared their unique journey through a C diff infection and discussed how it changed their lives forever

According to the Centers for Disease Control and Prevention (CDC) report published in
February 2015, almost 500,000 C.diff. infections occurred in the U.S. in 2011, with 83,000 recurrences.

Our guests – all  C. diff. survivor’s –  have been touched by this horrific
and life changing infection.

Heather Clark, Veronica Edmond, Renetta Dudzinski, and Lisa Hurka Covington bravely share their unique journey through a C. diff. infection that forever changed their lives.

 http://www.voiceamerica.com/show/2441/c-diff-spores-and-more

 

Listen in to live broadcasts every Tuesday:  11a Pacific, 12p Mountain, 1p Central, 2p Eastern time

We are pleased to share  “C. diff. Spores and More” with you because, as advocates of C. diff., we are excited about what this cutting-edge new weekly radio show means for our Foundation’s community worldwide.

Hard Facts: Deaths and illnesses are much higher than reports have shown. Nearly half a million Americans suffered from Clostridium difficile (C. diff.) infections in a single year according to a study released today, February 25, 2015, by the Centers for Disease Control and Prevention (CDC).

• More than 100,000 of these infections developed among residents of U.S. nursing homes.

Approximately 29,000 patients died within 30 days of the initial diagnosis of a C. diff. infection. Of these 29,000 – 15,000 deaths were estimated to be directly related to a
C. diff. infection. Therefore; C. diff. is an important cause of infectious disease death in the U.S.
Previous studies indicate that C. diff. has become the most common microbial cause of Healthcare-Associated Infections found in U.S. hospitals driving up costs to $4.8 billion each year in excess health care costs in acute care facilities alone. Approximately
two-thirds of C. diff. infections were found to be associated with an inpatient stay in a health care facility, only 24% of the total cases occurred in patients while they were hospitalized. The study also revealed that almost as many cases occurred in nursing homes as in hospitals and the remainder of individuals acquired the Healthcare-Associated infection, C. diff., recently discharged from a health care facility.

This new study finds that 1 out of every 5 patients with the Healthcare-Associated Infection (HAI), C. diff., experience a recurrence of the infection

Older Americans are quite vulnerable to this life-threatening diarrhea infection. The CDC study also found that women and Caucasian individuals are at an increased risk of acquiring a C. diff. infection. The CDC Director, Dr. Tom Frieden, MD, MPH said, “C. difficile infections cause immense suffering and death for thousands of Americans each year.” “These infections can be prevented by improving antibiotic prescribing and by improving infection control in the health care system. CDC hopes to ramp up prevention of this deadly infection by supporting State Antibiotic Resistance Prevention Programs in all 50 states.”

“This does not include the number of C. diff. infections taking place and being treated in other countries.”  “The  CDF supports hundreds of communities by sharing the CDF mission and    raising C. diff. awareness to healthcare professionals, individuals, patients, families,  and communities working towards a shared goal ~  witnessing a reduction of newly diagnosed            C. diff. cases by 2020 .”   ” The CDF Volunteers are greatly appreciated as they create positive changes sharing their time so generously worldwide aiding in the success of our mission and raising C. diff. awareness.”

C. diff. Spores and More” spotlights world renown topic experts, research scientists, healthcare professionals, organization representatives, C. diff. survivors, C Diff Foundation board members, and their volunteers who are all creating positive changes in the C. diff. community and more.

Through these interviews, the CDF mission will connect, educate, and empower many.

Questions received through the show page portal will be reviewed and addressed  by the show’s Medical Correspondent, Dr. Fred Zar, MD, FACP,  Dr. Fred Zar is a Professor of Clinical Medicine, Vice HeZarPhotoWebsiteTop (2)ad for Education in the Department of Medicine, and Program Director of the Internal Medicine Residency at the University of Illinois at Chicago.  Over the last two decades he has been a pioneer in the study of the treatment of Clostridium difficile disease and the need to stratify patients by disease severity.

 

Join us Tuesdays in listening to the educational episodes of C. diff. Spores and More”

Missed any episode?  It’s okay, each episode becomes a pod-cast which you can access from the program page and listen to the educational information at your leisure.

View the programs and radio information and access pod-casts by clicking on the link below:

www.voiceamerica.com/show/2441/c-diff-spores-and-more

 

Take our show on the go…………..download a mobile app today

http://www.voiceamerica.com/company/mobileapps

C diff Survivor Sharon Shares Her Journey With Fellow Survivors

CdiffSurcicorsLOGO2015My story all started with an emergency room visit for a blockage in my common bile duct in October 2014. Things catapulted into a nightmare that is still continuing today. I had an ERCP to place a stent into my bile duct at Stanford. I developed Sepsis, Pancreatitus and I went into full organ failure as a result. I was in ICU for 48 hours.

A week later I had my gallbladder removed with a full surgical cut. I then developed pneumonia. My hospital stay was almost 2 weeks. I went home completely unconditioned and very weak. I spent the next two months healing. In mid December I had my incision burst open from an abdominal wall abscess. I had to have the incision opened up all the way to  the abdominal wall and it had to heal all over again. For all these ailments I was treated with a slew of antibiotics via IV and tablets. I did not know I was being dosed into hell.  Near the end of December I went back to Stanford for them to remove my  stent via an ERCP procedure. This makes me so angry and upset when I think about it. About 8 days later I started having stomach pain and unstoppable diarrhea.

My GI Doc did a stool sample and blood work and gave me the diagnosis that I had contracted C.diff. I did not realize just how serious this can be. He prescribed Flagyl and I took it religiously and followed all doctor’s orders on taking the exact probiotic etc. I finished the Flagyl and four days later the diarrhea started all over again. I was going 20 times a day. I called him right away and he put me on Flagyl again. This time for a longer period. I finished that course and again I was clear for about 5 days when the severe diarrhea took hold. I was again going about 25 times in a day. I lost 7 pounds in 3 days. I got hold of him and he wanted me to do a Sigmoidoscopy. He prescribed Vancomycin and 2 doses took away the harsh symptoms. By the time I did the Sigmoidoscopy there was not a trace of C.diff. or any kind of colitis. So I diligently finished the vancomycin after 21 days. I was free for exactly 4 days when I started having gas and nausea. By the third day I was again in the bathroom 20 plus times but this time I was in excruciating pain.

He scheduled a colonoscopy but when he saw that my WBC were over 16 000 and my stool sample came back positive he cancelled it. I was in so much pain I actually took Norcor and I was ready to ask my hubby to take me to the hospital. Again with the diarrhea and the colonoscopy prep I lost 3 pounds in a day. He consulted with an infectious disease specialist and he has me on a long course of Vancomycin and it is stepping down the dosage every week until the end of April.

I then have to take another medicine that binds bile salts for a month. This has truly been a nightmare. It rules my life. I have good days and then I have bad days. I am struggling with nutrition because I still have an incision that is not fully healed 5 months after surgery.

I am supposed to be mindful of getting enough protein but the C.diffl takes away my appetite. I get very angry that this has happened because someone did not do their job properly and I was exposed to dirty endoscopic equipment. This has caused me so much misery and pain. I have missed so many things at my son’s school. I have to sometimes ask my hubby to rearrange everything at work so that he can go and pick up the kiddo. It ruins plans for outings and dinner dates as I never know if I will feel strong enough to go out.

This should never happen to anyone. The best was my GI doc canceling the colonoscopy and telling me I am highly contagious and it would be better to not expose anyone having a procedure after me. If only I had been given the same consideration. I am at such a low ebb with this struggle. I am already panicking about it coming back after I am done with this round of Vancomycin.

We will be leaving on a family trip two weeks after I finish this round of medication and I am scared it will come back while I am away from home. I have been having severe panic attacks and I cannot stop worrying about it. I am thankful that I found the C Diff Foundation  on Facebook and webpage.  It has been so helpful.

I have told my GI that next time I am ready to try the fecal transplant option. I just want this to be done. Five months of hell and 3 relapses  and I have lost 30 lb….the only good thing.

C diff Survivor Roy P. Shares His Journey With Fellow Survivors

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In January, the prostate biopsy required both Levaquin and Gentamycin.  One month later, a five-hour oral surgery required ten days of Clindamycin.  Four days after completing the Clindamycin, the C diff symptoms started.

Saw my PCP who prescribed Clarithromycin.  Within three days the diarrhea was worse.  Returned to the PCP, who said I should get to the ER and have lab tests and a CT scan.
One hour after my arrival in ER, I was admitted for C. diff.  I was severely dehydrated. Along with I-V fluids, I got an I-V of Flagyl.  For the next two days, I was connected to the I-V for fluids, but began to eat again, and be able to take the Flagyl in pill form (not an easy thing to do!)
Prior to this event, I had never been admitted to a hospital in my 63 years.  I did not know what C. diff was, nor had I ever heard of it.

On the fourth day, I was released from the hospital and understood I was still infectious.  I continued 12 more days of Flagyl.  Three and a half weeks after the symptoms began, I provided a sample to my PCP who had it tested and the results indicated C. diff toxins were negative.
Since then, I’ve learned more about C. diff and the support available.

I’ve been taking daily probiotics with 10 strains; eating mild foods to allow my colon to recover from the injuries; trying to stick to gluten-free to minimize the challenges to the colon while it heals; and taking inulin fiber to encourage microbe growth.

I sleep well at night, deal with “issues” for an hour or so in the morning, and live a pretty much normal life. I lost a lot of weight during the infection, and I’m swimming and water-walking in the fitness center pool to rebuild those skinny legs. A lot of friends have asked me what happened, and I tell them of the effects of antibiotics, especially when there are multiple applications.  Since most of them are in my same age group, I encourage them to be careful with antibiotics, and to look after their colon and the microbes through probiotics.

My journey’s not over, but I feel I received great medical care at the hospital, have incredible loving support from my wife, and know that there are many people who are there for me.