Category Archives: Survivor Experience

An Opportunity For C. diff. Survivors To Discuss Their CDI Journey That Will In Turn Help Others

Posted in Announcements, Clinical Trials, Survivor Experience by

 

We’d love for C. diff. Survivors to describe any history that may have led to the C. diff. infection  (CDI) (e.g. taking antibiotics just prior?), the diagnosis – particularly how long this took and any specialists that had to be involved, the various treatments involved and most importantly, the impact it had on you, your family, your daily life and any lasting effects, with the Summit Therapeutics organization.

 

♥ HELP THEM TO HELP OTHERS ♥

 

If you are interested in volunteering to discuss YOUR journey and information with the Summit Therapeutics organization, please contact:

Michelle Avery, Senior Director Investor Relations & Patient Engagement

Summit Therapeutics

Michelle.Avery@summitplc.com

D +1 -617 225 4455

 

Recurrent C. diff. Infection; Begins With An Antibiotic and Ends With a FMT

Posted in Survivor Experience by

Name: Melissa cabral

Email: melissacabral918@yahoo.com

Your Story: I developed c diff colitis in July 2012 following clindamycin for a root canal. The first time I was in the hospital for 8 days. I had recurrent c diff after that until I finally had a fecal transplant. My husband was going to be my donor but he tested positive for c diff as well. My mother ended up being my donor and I’ve been c diff free ever since.

 

Recurrent C. diff. Infection Forces a Healthcare Professional Into Early Retirement

Posted in Survivor Experience by

Name: Angie Martin

Your Story: I am a retired healthcare professional, I could not even begin to tell u what I have been thru the last 4 -1/2 yrs….from my FMT’s – to all going on now with my digestive system…IBS/ulcerative colitis, acid reflux and a few polyps that was benign..to having to be very careful with antibiotics. Allergic to quite a few..very slim margin for me for antibiotics..so I don’t get c diff…I dealt with it for almost 3 yrs. A neg result is good news for me…I have been having problems now for the last 6 weeks. But don’t let it get me down. On rocky rd now…I can test neg in stool but yet be positive for it. I have changed my diet..a lot of changes in the last 5 yrs. Please never feel guilty. God made each and everyone of us unique..enjoy life the best we can.

Kudos to this group and the C Diff Foundation   Cdifffoundation.org

College and A C. diff. Infection; A Note From a Student Beating the Odds

Posted in Survivor Experience by

Name: Rebecca

C.diff.Survivors Name/s: Rebecca

Comment: I have beaten two rounds of c diff! While this was going on, I still managed to work on my college degree, make deans list, and help others. God put it on my heart to say this: when you put your mind to it, you can beat this!

Every day is a new opportunity and miracles happen every day!

C Diff Foundation Celebrates National Volunteer Week Worldwide

Posted in C diff Nationwide Community Support Program, C. diff. Radio, Survivor Experience by

National Volunteer Week, April 23 – 29th

The C Diff Foundation celebrates National Volunteer Week, April 23 – 29 to recognize more than 150 members of the C Diff Foundation Volunteer Members worldwide, including Volunteer Patient Advocates, who have collectively donated more than 20,000 hours of volunteer service to the Foundation last year. The theme for this year’s celebration is “Sharing Time, Touching Lives.”

“Through the years the C Diff Foundation Volunteer Members have served as ambassadors of goodwill, service and compassion,” said Angelo Ortiz, C Diff Foundation’s Treasurer and Chairperson of  the Volunteer Patient Advocate Program

The C Diff Foundation, a 501(c) (3)  non-profit organization, established in 2012, and comprised of 100% volunteering professionals dedicated at supporting public health through education and advocating for C. difficile infection (CDI) prevention, treatments, environmental safety, and support worldwide

Not only do the volunteer members provide financial support for the C Diff Foundation’s programs — it is through their dedication and passion that continuously expands the Foundation’s mission.  Some volunteer patient advocates have their own unique C. diff. Survivor Journey which is shared with compassion, dedication, and caring hearts touching patients, students, fellow healthcare professionals,  and residents in the community every day.

Volunteer members will be recognized on November 9th & 10th  during the C Diff Foundation’s
5th Annual International C. diff. Awareness Conference and Health EXPO being hosted
in Las Vegas, NV.  During the annual event the “Volunteer Shooting Star” awards will
be presented along with numerous Volunteer Patient Advocate certificates for service hours.

“We are fortunate to have such kind and giving volunteers,” said Nancy C. Caralla, Foundress and Executive Director of the C Diff Foundation, “It is an honor to recognize those who have selflessly given so much to help educate, and promote the Foundation’s mission worldwide.”

The C Diff Foundation Volunteer Program was organized in 2012 to provide volunteer services, promote community understanding of Clostridium difficile (C. diff.) CDI  Infection Prevention, Treatments, Environmental Safety and Support and to raise funds for special C Diff Foundation patient/family programs.

The C Diff Foundation Members, with  the Volunteer Patient Advocates, successfully promote
“C. diff. Awareness”  nationwide and in fifty-six  (56) countries and host a
U.S. Nationwide information Hot-Line (1-844-FOR-CDIF) to support health care providers, patients, and families guiding them through the difficulties caused by a C. diff. infection.

Volunteers Members serve in 12 different committees;  Host monthly teleconference support sessions; Provide Education highlighting all aspects of a  C. diff. infection and other  healthcare related topics through workshops, community events, and literature with patients, their families, and residents from villages to cities around the globe; Triage Nurses assist patients, families, clinicians with answers to prevention, treatment, environmental safety and support questions Monday – Friday 9:00 a.m. – 5:00 p.m. EST;  Register support session participants,; Provide IT management; Give clerical and social media assistance to various departments;  Provide a “Global Broadcasting Network” with www.cdiffradio.com with their educational radio
program,C. diff. Spores and More which broadcasts live every Tuesday at 1:00 p.m. EST. We are grateful for our sponsor Clorox Healthcare for making this program possible.  Each episode becomes a podcast and is accessible from the C. diff. Spores and More living library located on the main cdiffradio.com program page. Each November the Volunteer Members gather at the annual conference to both present and provide assistance in making the attendees feel welcome and expand their knowledge base on a variety of health topics that are linked to the main topic ~ Clostridium difficile infections.

For more information about the C Diff Foundation Volunteer Program, please call 919-201-1512 (toll free in USA 1-844-367-2343 ) or e-mail:   info@cdifffoundation.org

C Diff Foundation Volunteers — Helping Us  Help Others and The Beacon Of Light On the Other Side Of Pain and Suffering.

Life’s Challenges Are A Challenge

Posted in Survivor Experience by

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.

Veronice “Raunnie” Edmond, Author, Health Coach, C.diff. And Breast Cancer Survivor Raises CDI Awareness

Posted in support, Survivor Experience by

veronica-edmond

 

Veronica “Raunnie” Edmond, Author, Health Coach,
C Diff Foundation Volunteer Patient Advocate, C. diff. and
Stage 3 Breast Cancer Survivor joined us on
September 20th, 2016, at the
4th Annual International Raising C. diff. Awareness Conference and Health Expo in Atlanta, Georgia.

Veronica bravely shared her tormenting, painful experience encountered with a C. difficile infection while simultaneously undergoing  treatment for Breast Cancer.

We are grateful for her full recovery from this life-threatening diagnosis and infection and for the positive attitude Veronica has in promoting breast health, wellness, and raising C.diff. awareness.

Thank you Veronica and to all fellow C.diff.  Survivors  www.cdiffsurvivors.org  sharing their inspirational journey

“No one can do this alone ~ All of us can do this together.”

C.diff. Survivor

C.diff. Survivor

 

 

 

 

 

Thanksgiving is a great time to reflect on the year’s blessings, reconnect with family, share a big meal and sometimes get indigestion. Often times, the overindulgence of a variety of foods may cause an upset stomach or stomach bug.

To be blunt, the rapid expansion of the stomach and foods rich in creams, sugar, and fat can cause gas, bloating and diarrhea. In most cases, the stomach discomfort is temporary and, with over-the-counter medicine, the symptoms are gone.

When should you be concerned, if the usual remedies are ineffective to control diarrhea?

One of the answers is when the pain from diarrhea, abdominal cramps and fever is so severe that it lands you in the emergency room. In Veronica “Raunnie” Edmond’s case, she was already hospitalized during her second round of chemotherapy for an aggressive form of stage 3 breast cancer.

Please click on the link below to be redirected to this most admirable story shared by Veronica with Marie Y. Lemelle, Contributing Columnist at Wave Newspapers

http://wavenewspapers.com/health-matters-a-case-of-diarrhea-that-almost-turned-deadly/

 

MarieLemelle2016

Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar, or Instagram @PlatinumStarPR. Send “Health Matters” related questions to healthmatters@wavepublication.com and look for her column in The Wave.

C. difficile Infection (CDI) Journey Shared By A Husband And the Toll It Took On His Wife

Posted in Survivor Experience by

C. diff Infection

What is that?

That was my first question to doctors upon hearing my wife’s diagnosis.

I had never heard of C.diff. before.

I did not know what it was or what it was capable of. Over the past several months I have been educated as to how horrific and deadly this infection is. It is literally a game changer…. a life changer. This is something that can quite possible destroy humanity. I am not sure why it is not being discussed more in the main stream media.

This infection kills more people every year than HIV/AIDS and drunk driving combined. It is my goal that every single person is made aware of the dangers of it and is educated about it as I have been. One day while looking at these pictures I realized the powerful statement that could be made with them. I have watched this video several times since I put it together and I still get very emotional about it.

It is amazingly sad what many people go though that is unknown to so much of the population.

Please help – Raise C. diff. Awareness – spread the word and one day additional medical/healthcare methods of prevention, and treatments will be made available that are focused on this dreadful life-threatening infection

Even if only one  person is helped —  we’ve done a good thing. Thank you.

Brian and Tonia

To watch this C. diffiicle Survivor’s  Journey – Please Click On The Following Link:

C. diff. Added To The List Of Illnesses That Broke The Camel’s Back

Posted in Loss of a Parent, Survivor Experience by

 

Remembering the good times spent together during the Summer season.

Dad and I would go hunting, fishing, and boating and spend days together just reminiscing about the good times and the bad times.  We’d talk about the families, how to know when to move forward and when to hold back, when it’s a good time to invest, and the million “what-ifs” that we all experience and wonder about.

Yeah, it’s hard now and missing him more than ever.  It’s been ten years now since he died and it always feels like yesterday.

Sure Dad had heart trouble, his legs were getting weak, bad knees, and ailments that a lot of seniors develop.  It is wasn’t until he contracted a case of whooping cough that really started the ball rolling downhill.  His lungs were never the same, and then there was the pneumonia and in and out of hospitals for care.  It became a domino scenario and eventually the diagnosis of C. diff. was the straw that broke the camel’s back.

We know now that the body can only take so much and the infections mount and the antibiotics in every combination were not working to fight the one bug that went into the new bug that the Infection Disease docs couldn’t even identify.  Super-bug haven and Dad was suffering terribly through each one.  His body was unable to fight the infections any longer and we remember feeling the hopelessness, the grief, the sadness days before he died.  When there’s nothing you can do to help your parent and loved one it tears you up and breaks your heart.  It may be ten years but that pain – the real heart breaking pain will always be remembered and will never really go away.

We get up every morning and we begin our days take care of our families, thrive the best we can knowing that today is going to be better, today we are going to be better, today we are going to be stronger than we were yesterday.  Today is a gift and we have the opportunity to make it better for everyone around us, too.  We can do it and we can help with sharing the information provided by the C Diff Foundation, become an active volunteer and share the brochures and literature to raise awareness.  We can’t bring our loved ones back but we can sure help save lives around us.  With each brochure we give out in the community and tell our stories with strangers who never heard of C. diff. or infections or how to talk with the docs about antibiotics and if it’s really necessary to take one and when we should take one — we can make a difference.  There’s no better day than today to begin making a difference.  It’s not all up to the government and local agencies – we live in our communities – we love our neighbors – so let’s join together and do something pro-active.  Let’s remember our loved ones by doing something to help those living around us.  Raising C. diff. awareness with the C Diff Foundation has found a way in my life, in my families life, and we know that by sharing shows we are caring and I know that my Dad is smiling down upon us from heaven happy that we’re trying to make a difference.  Don’t get me wrong, we’ll always miss Dad, always love him and remember the good times together and no one can take that away or replace him.  We just need to find an avenue to channel the energy and turn it into something positive.

Being a volunteer has become our positive and we do it in our Dad’s memory.  We hope to help other families from loosing their parents to this deadly infection.    Thanks for letting me share my story with others who have walked this hard road and miss their Dads and Moms, too.  Thanks for all you do for others C Diff Foundation, thanks alot.

Yours truly,

 

James Davey

 

 

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

Posted in Survivor Experience by

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