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.”

 

 

Clostridium difficile (C. diff.) Infection; A Patient’s Spouse Perspective Living Through a “C. Difficult” Nightmare

HandsTouchingSun“Through better or worse, richer or poorer, through sickness and health — we survived not one but two separate C. diff. infections”  stated Angelo Ortiz, a C. diff. Survivor.

*the patient’s name has been purposely omitted for privacy.

C. difficult is an excellent term used to partially describe
the experience living through a Clostridium difficile infection with a partner,
a soul-mate, or a significant other.

A way of regarding this situation objectively ; a point of view shared with fellow C. diff. survivors also walking this path with their loved ones.

Interviewer:  Angelo, did you know what a Clostridium difficile infection was, also known as C. diff. ?

Angelo:  Yes, being in Nursing I have cared for patients diagnosed with C. diff. infections.  However; I did not surmise that my wife was suffering from this infection.  Usually patient’s bowel movements will have a significant obnoxious odor that can alert healthcare providers to surmise a C. diff. infection.  This is not always the case anymore.  Over the past decade healthcare professionals have noticed changes in symptoms, treatments, and the overall microbiology aspects of this infection.  The lack of odor in patients diagnosed with a C. diff. infection is one of them.

Interviewer  Had your wife been on Antibiotics or in a hospital being treated for an infection prior to being diagnosed?

Angelo:  No, she was not ill, had not been on antibiotics and not been a patient in a hospital.  Nevertheless; working in a hospital and being in close proximity with patients being treated for this infection may have played a big role in her acquiring it.

Interviewer:  Did the healthcare environmental operations utilize a EPA Registered product with a
C. diff. kill claim?

Angelo:  In 2009 Clorox Commercial Solutions Ultra Clorox Germicidal Bleach ® was named the first and only product to obtain Federal EPA registration for killing C. diff. spores on hard, non porous surfaces when used as directed.  Before then there weren’t any products available addressing
C. difficile spores and C. diff. spore elimination through disinfecting.  Since that time, we have come a long way and the available products EPA Registered addressing C. diff. and also UV Disinfecting systems available to healthcare facilities fighting major healthcare-associated infections.

Interviewer:  What were the symptoms your spouse was experiencing on a daily basis?

Angelo:   Where do I begin?  There was pain, so much pain that it made my heart break.  I cried when she cried and screamed.  Talk about feeling helpless.  Watching my beautiful wife lay curled up in a fetal position in a hospital bed that we had to rent and place in the living room because she was too weak to climb the stairs in our townhouse.  It wasn’t pain she would tell me, it was her intestines twisting and turning and we could hear the whooshing and active bowel sounds.  They were so loud and audible we didn’t need our stethoscopes to access them.  If a half of a sandwich was ingested, it was eliminated within 45 minutes.  Maintaining hydration was a challenge every single day.  The docs had my wife following a clear liquid diet and with each office visit she would tell each doctor assessing her, “I can’t eat, everything I eat just runs right through me.”  They would tell her to not worry about it, stay on the liquids, eat what you can.  There wasn’t a lot of nausea or vomiting, no fever, but there were times where she would shiver and complain of feeling cold.  Falling into malnutrition and also mal-absorbtion also  caused G.I. system complications later on, too.

Interviewer:   What healthcare providers were visited and rendered care?

Angelo:   It took six months of weekly visits complaining of the G.I. symptoms and pain, to receive a concrete diagnosis by the Primary Care Physician.   After three months, after being diagnosed with a CDI and after the algorithm of treatments were not making a difference, the referral to be assessed by a Gastroenterologist came about.   During the next six months my wife was seen by all fourteen Gastroenterologist’s in the one practice without any significant improvements noted under their care.  After the six month of weekly visits and continued changes in medications, the physicians recommended a referral to Hospice.

Interviewer:   Where did the next level of care take you?

Angelo:   A Physician studying Clostridium difficile, suggested getting a second opinion by a Gastroenterologist at Duke University Hospital in N.C..   I met with the benefits coordinator at work who assisted in the process to obtain the approval for the second opinion.   Just to let everyone know, always call the customer service phone number on the back of the ID card and speak to the Case Manager working on the care in progress to learn of “how to” obtain a second opinion or visit the benefits coordinator at work to learn more about this option.  It is good information to know and if it weren’t for the one Physician suggesting this option to us I wouldn’t have a wife to talk about today.

Interviewer:   What was done differently at the new Physician’s office at Duke?

Angelo:   This visit bought my wife her fourth Colonoscopy and Endoscopy, however; we didn’t fight it.  If it was going to help the physician diagnose and treat this infection, we’re all in.   The results were on the positive side, no noted new changes or new diagnosis and another negative Celiac/biopsy was done via: endoscopy.  The Physician made a decision to utilize a medication being clinical studied for C. difficile that was already FDA approved for a different gastrointestinal diagnosis.  The cost of the medication was, as they would show on a menu, $$$$$.  We were extremely happy that this physician had the medication samples available.   Ten days of taking the medication prescribed there were noticeable changes taking place.  There was less bloating, less cramping, a lot less pain, the explosive – watery stools that were >15 x’s in a day were decreasing.  We had not witnessed any positive changes in almost a year.
This was a down right miracle in our book.

Interviewer:   You mentioned the medication expense.  Did you encounter other financial expenses during this infection?

Angelo:   Financial Expenses?   We drained our savings first after my wife was forced to resign from her job.  You can’t work in Nursing when you are tied to the bathroom, they don’t go together really in any job.  You just can’t work and shouldn’t work if you are being treated for an active CDI because it is a contagious infection.  That is why in the hospitals and healthcare facilities isolation precautions are implemented to help stop the spread of the infection.  So we go from being a two income family to a one income family over night.  Is anyone really prepared for that kind of a financial change over night?  The 401K was utilized to cover healthcare costs, prescriptions, co-pays, emergency room fees, specialists, travel, outpatient diagnostics, and the monthly hospital bed rental.  The mortgage was based on our income — joint, the vehicles were purchased separately, there weren’t many monthly recurring bills — it was all of the new bills being created by this illness.   Now we’re faced with the medical bills, and how do we pay for the living expenses all on one salary coming in?  You do what you have to do, we drained all of the retirement funds and the golden nest egg was scrambled.

Interviewer:   How long did it take your wife to get back on her feet and back to work?

Angelo:   It took her almost two years to feel strong enough to re-enter the work force.  From being ill so long and bed ridden from exhaustion, there was physical therapy, there was working with two Registered Dietitians from the hospital to retrain the gut after being on a clear liquid diet for over a year.  There were weekly visits to specialists who were monitor all the systems that were affected by the negative impact of this infection.  Hematologist, Gastroenterologist, Cardiologist, Endocrinologist, and P.T., and so much more.

Interviewer:   Do you have any message that you would like to share with others who are the  spouse/partner/significant other with another diagnosed with a C. diff. Infection?

Angelo:   Sure.   Don’t give up!  There were so many days that were darker than nights and we didn’t think there would ever be a light at the end of the tunnel.  It’s through our faith, our hope, and support of friends who weren’t afraid to visit us, along with reaching out to dedicated professionals and the Foundation’s that work with these professionals that care and know how to maneuver through the thorn bushes that brought us forward and through this nightmare.  We’ll always be dedicated and supportive to the C. diff. community and the C Diff Foundation and their members for their continued help.

 

We thank Angelo for his time and for sharing this journey through a C. diff. infection with a spouse, partner, soul-mate, or significant other.

 

To hear more about C. difficile infection prevention, treatments, clinical studies, environmental safety products and home care —  access  the C. diff. Spores and More Global Broadcasting Network Podcast library and listen to topic experts share educational information focused around C. diff. and other healthcare-associated infections.
please  click on the logo below *

cdiffRadioLogoMarch2015

 

 

 

 

 

4-11-16 C Diff Foundation

C. diff. Global Tele-Support Program Welcomes C. diff. Survivors, Patients, Families, Clinicians and All

CdiffGlobalSupportFThe  C. diff. Global Community Tele-Support  program was developed for patients diagnosed with this gastrointestinal infection, for their families, clinicians, C. diff. survivors continuing their recovery from a prolonged illness and any individual seeking support and information are welcome to register.

 

 

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.

These tele-support sessions are focused on:
Nutrition, Mental Health, The Who – What – Where of C. difficile infections,
Fecal Microbiota Transplant (FMT) general information, and more.

The support sessions are lead by fellow-C. diff. Survivors and Healthcare Professionals
with first hand experience and knowledge of topics being discussed.

This program is beneficial to families, patients, and healthcare professionals alike.

Please feel free to offer this program information to others to listen in or participate.
Share the page with friends/family members afflicted with a C. difficile infections
and many other long-term illnesses.

This program is free of charge and available Nationwide and is accessible from 57 Countries.

*To view the complete Country/City Listing please visit the C Diff Foundation Website http://www.cdifffoundation.org  and it can be located under the Top Tab Heading “C diff Support.”

 

Support is never singled out to one diagnosis and is only a phone call away

For the month of  MARCH  the following  Support Sessions are available:

Monday, March 7st:  Host – Angela Martin, a  retired healthcare professional and
fellow-C. diff. Survivor.  Topic:  The session will provide general  information and support related to Fecal Microbiota Transplantation (FMT) as an alternative and promising treatment (not yet FDA approved with clinical data pending), for C. difficile infections (CDI).  Discussions will be focused on information for pre- and post-FMT and failed FMT’s for patients, families, and clinicians worldwide.   Join Angela’s support session on the first Tuesday each month
via: Teleconference at 1:00 p.m. Central Time

Wednesday, March 9th: Host – Lisa Hurka-Covington, a fellow-C. diff. Survivor.
Topic: The session will provide mutual support related to depression and anxiety created by long term illnesses.  Join Lisa to discuss the importance of supporting mental health with physical healthcare on the second  Wednesday each month via: Teleconference at 2:30 p.m.
Eastern Time

Friday, March 11h: Host – Scott Battles, a fellow-C. diff. Survivor.   Topic: The session will provide answers to questions with the introduction to a C. diff. infection.  Join Scott with fellow patients, families, and C. diff.
survivors on the second  Friday each month  via: Teleconference at 7:00 p.m.
Central Time

Colorado Physical Venue Support Group:  Colorado C. diff. Support Group,  Hosted by  a fellow-C.diff. Survivor, Roy Poole,  on the Third Tuesday of each month.  The session will provide discussions about C. diff. introduction, C. diff. Research and development in progress, and hope.  Join Roy and fellow patients, families, and C. diff. survivors  on March 15th at  the Arvada Covenant Church,  5555 Ward Rd , Arvada, CO from 5:30 p.m. – 7:00 p.m
Mountain Time.

Thursday, March 17th: : Host – Karen Factor, MS, RD   Topic: The session  will provide discussions focused on  Nutrition during a C. diff. infection (CDI) and how to manage nutrition and hydration.  Join Karen  the third Thursday each month  via: Teleconference at 7:00 p.m.
Eastern Time

Monday, March 28th: Hosts – Dr’s Caterina Oneto, MD & Dr. Paul Feuerstadt, MD
Topic:  Doctors Oneto and Feuerstadt will discuss C. difficile Infections; The What, Where and How There will be opportunities to ask a  brief question to the physicians.  We appreciate Dr.’s Oneto and Feuerstadt for donating their time to discuss C. difficile Infections and to provide information regarding prevention, treatments available, and environmental safety products available.   Join their support session via: Teleconference at 6:00 p.m
Eastern Time

NOTE:  The Physicians will not prescribe, diagnose, or provide medical assessment answers to any individuals participating in their support session.  Please contact the Physician providing care for a C. diff. Infection or other diagnosis that are being treated.    Thank you.

To register for any of the above sessions please provide us with the following information and  you will receive an e-mail in return with the support session Teleconferencing number and Conference ID number.

Or Telephone the office to register   U.S. Hot-Line:  1-844-367-2343,
International: 1-919-201-1512

Thank you for providing your Support Session Choice  to participate in a community support session.

C diff Infection; I Don’t Want To Feel This Way Anymore

No one understands the pain, the symptoms related to a C.difficile infection (CDI). The symptoms that cause isolation — either because others are afraid to visit or because you’re tied to the restroom or because the body is exhausted from depletion and the constant fluid shift. No, not many truly understand the pain that a body endures during the treatment for a C difficile infection and the healing process —- YOU are not alone and we do understand. For C.difficile infection information and support call the C Diff Foundation’s hot-line and speak with a information specialist today
1-844-FOR-CDIF (1-844-367-2343)

CdiffDontwantto

Warm Holiday Greetings From the C diff Survivors Alliance Network

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The holiday season is upon us; A time to share warm holiday greetings while reflecting upon the many individuals combating a C. difficile infection.

We especially call to mind those who have passed away from a Clostridium difficile infection and/or
C. difficile involvement while fighting other diagnoses simultaneously.

 

 

The all-encompassing nature of chronic illness and its disruption of life and plans can elicit a wide range of emotions. These responses include: stress, grief, anger,fear,depression, and anxiety.  Be kind to yourself.  Take time for you during the holiday season.

Try experimenting with different ways of managing stress and painful emotions. When you find a technique that works, try to incorporate it into your daily or weekly routine. Some ideas include exercising, walking, yoga, listening to music, deep breathing exercise, meditation, cooking, reading, writing in a journal, and spending quality time with family and friends.

We would like to take this opportunity to say that during the year it has been truly appreciated to stand along-side the many patient focused and educational organizations, healthcare professionals, and scientists researching and developing new preventative measures, and treatments to combat C. diff. infections along with the long list of  “superbugs.”

Through continued education and advocating for C. diff. infections and Healthcare-Associated Infections (HAI’s) positive effects are taking place in raising awareness  in prevention, treatments, and environmental safety worldwide.

In 2016 we look forward to releasing newly developed tools for patients, “C. diff. Survivors,” families, healthcare professionals. and residents in every community while  working toward a shared goal in witnessing a reduction of newly diagnosed  C. diff. and Healthcare-Associated Infection (HAI’s) infections.

None of us can do this alone…..all of us can do this together.

Thank you for your continued support and from all of us at the C Diff Foundation, and we wish you and your family warm holiday greetings.

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