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.”

 

 

Life’s Challenges Are A Challenge

How amazing it is that we accomplish and survive as many things that we do, not only in one day, one week, one month, year, decade, but through our lives. The next time a barrel full of TNT begins to roll your way — roll your sleeves up, roll your eyes and prepare to jump because you’ve got this –you’ve been through worse to see the better.

C. diff. Survivors Raise Their Voices On February 14th To Raise Awareness Worldwide

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Join us on February 14th with fellow C.diff. Survivors who openly share their

journey with the world and talk about how they are managing today.

www.cdiffradio.com

 

C. diff. Spores and More Global Broadcasting Network™

Brought to you by VoiceAmerica and
sponsored by Clorox Healthcare.

C. diff. Spores and More is–An educational program that is dedicated to  C. difficile Infections  and more–

Live Broadcasts air on Tuesdays at the following times:
10a PT,    11a MT,   12p CT,    1p ET

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

***** If you or someone you know would like to participate on February 14th program or upcoming episodes, please contact us at info@cdifffoundation.org   or  telephone  919 – 201- 1512.

 

 

C. diff. Patient Experience — Never Giving Up Hope While Advocating For A Family Member

Hi,

My name is Kelly.

My Father contracted C.diff .when he was taken to the hospital for a stroke.

He was placed in a stroke ward.  I knew he had loss stool before he was discharged. I even cleaned up his bathroom there because he had an accident. I really didn’t know about C.diff. Now thinking back the hospital staff should have! They discharged him anyway never testing for C.diff..

The next morning at home he was so weak he couldn’t even sit up in bed.we call for ambulance. So it begins! He was in and out of hospital and rehabs for about a year. Only being home maybe a week tops in between. None of medications could keep it a way.

We found out about fecal transplants from our own research and through me talking with a customer where I work who had C.diff.  an had also done the fecal transplant.

My dad didn’t seem to have the serious pain in belly but he had deteriorated in many other ways. Every time he would get well enough for rehab it either came back or his insurance said it was time to go. This was his new base line,     NOT EXCEPABLE……BUT thank God the fecal transplant worked and we were looking forward to recovery.

It’s been over six months and so far so good…. During all this and with a lot of pushing they discovered a gall stone very large blocking his bile duct so they removed that. I always wonder if that had any thing to do with the recurrence.but never could get anything out of Dr about it. We brought him home from rehab in December,  but again do to all the muscle break down he had a fall in the bathroom and fractured his hip.back in hospital and 3 pins later then back to rehab.In January we brought him home for the first time in like a year it year and a half we finished all his therapy at home.

By the way — home for him is still my house not his because I can keep him on one floor. This was an exhausting experience on him, mom and me plus my husband and kids…..but what irks me the most was felt so alone.. Drs acted like no big deal or they just didn’t have much to say and God forbid you ask questions or doubt them…..sometimes I think we knew more then them.they don’t treat the patient just the c-diff or symptoms…we got more answers from research, other people and the C Diff Foundation then ever at the hospital.   Gosh and trying to explain every time it was not from antibiotic use but hospital acquired……we have also finally found a 2 great GI Doctors .

He just recently had a breathe test because of loose stool,which has not been C. diff.. He has a abundance of bad bacteria in his intestines…so being treated for that and never giving up his Probiotic ……thanks so much for listening.

PS. One day while outside the ER I CALLED the C Diff Foundation Hot-Line (1-844-FOR-CDIF) — I was so upset we were here again and didn’t know what to do. A woman (Triage Nurse) talked to me and led me though it with info on what to do and ask for and support…..I don’t remember her name but she did more for me in that one call then anyone else including hospital staff….she will never know how grateful I am

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 *

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4-11-16 C Diff Foundation

C. diff. Survivor Shares How Life Is Not the Same After Losses

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It could be Spring, it could be Summer the seasons really don’t matter anymore. 

A loss is a loss in life.  We loose more than we anticipate with any long-term illness and wellness draining diagnosis.  We loose even more deeply and permanently when our loved ones pass away from a multi-diagnosis treated either long-term or short- term  ~ it really doesn’t matter because bottom line — it’s a loss.

 

Clostridium difficile (C. diff.) is gram-positive, anaerobic, and a spore, rod/spindle-shape,  a common bacterium of the human intestine in 2 – 5%. C diff. becomes a serious gastrointestinal infection when individuals have been exposed to antibiotic therapy, and/or have experienced a long-term hospitalization, and/or have had an extended stay in a long-term care facility. However; the risk of acquiring a C diff. infection (CDI) has increased as it is in the community (community acquired) and can be found in outpatient settings. There are significant higher risk factors in patients who are immunosuppressant, ones who have been on antibiotic therapy, and the elderly population.

We know and understand “what” a C. difficile infection is, what we can not understand is what this, and many other healthcare-associated infections,  can do to our lives. 

The acute onset of a C. difficile diagnosis is received, treated, resolved only to have a re-occurrence of the same illness from which one has previously recovered, moving into a the long-term (chronic) debilitating illness.  It’s not the same for everyone as C. diff. is a very individualized diagnosis, as many other infections. 

The landscape of Clostridium difficile has changed over the decades; there are new strains, there are a lot more questions, and increased research is actively taking place worldwide.

The geriatric population used to carry the higher risk of acquiring this infection, however; that has also changed.  It is being diagnosed across the life-span.

C. diff. knows no boundaries, this infection can be acquired by anyone, at any location, at any age.”

 

A loss is a loss in life.  We loose more than we anticipate with any long-term illness and wellness draining diagnosis — one like C. difficile.

Life is not the same after experiencing a loss; The loss of a loved one, the loss of employment, the loss of how the body used to just function without a care in the world.  The Gastrointestinal system endures more than it should especially after encountering three, four, five, six, seven, eight, nine, ten recurrences.

C. diff. claims lives,  rips away dreams and the families are changed forever.

The seasons and the holidays come and go, the healing takes time both emotionally and physically.  The losses are many from an infection — one that we can all try to prevent

 

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PREVENTION:

Hand washing is so important, before and after meals, after using the restrooms, before cooking and touching food, after handling pets, and often.  It is the first defense of stopping the spread of germs and increasing personal safety.

Special contact precautions for prevention of the spread of infection can vary from strict isolation of the patient and such measures as wearing gloves, and a gown and healthcare professionals must use care when handling infectious material and soiled linens.

No matter what the diagnosis or status of the patient, hand washing for everyone – before and after each contact is imperative.

 

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In the care of patients for whom special precautions have not been assigned, gloves are indicated whenever there is direct contact with body fluids. Gowns are worn over the clothing whenever there is a positive stool test for C. diff. infection, and the possibility that one’s clothing/uniform could become soiled with infectious material.

When a definitive diagnosis of an infectious disease has been made and special precautions are ordered, it is imperative that everyone having contact with the patient adhere to the rules. Family members and visitors will need instruction in the proper techniques and the reason they are necessary.

 

 

PatientwashinghandswhelpOffering the patient a basin of water with soap, and a dry towel,  to wash their hands will also help. The patient is not exempt and this important infection prevention method will reduce the spread of germs and also reduce the reintroduction of the germs to your loved one — the patient.

 

Pill-bottlesAnd limiting the use of Antibiotics — discussing the diagnosis with the healthcare provider and knowing when they will be helpful treating  symptoms will also curb antibiotic resistance and prevent acquiring  C. difficile.

To listen to a live broadcast with Dr. Hicks and Dr. Srinivasan from the CDC and their discussion on  “How to use antibiotics wisely and how everyone can help in the fight against antibiotic-resistance,” on “C. diff. Spores and More” Cdiff Radio click on the following link

http://cdifffoundation.org/2016/02/10/using-antibiotics-wisely-how-everyone-can-help-in-the-fight-against-antibiotic-resistance-worldwide/

 

For more information on Infection Prevention, Antibiotic Resistance, Advocating for a loved one,             C. difficile information on “home care” and more ~ please visit the C Diff Foundation website     www.cdifffoundation.org

 

Life will not be the same for us and we can all make a difference from today forward in helping others save lives and prevent  C. difficile infections worldwide.

 

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