Tag Archives: Cdiff support

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

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

Posted in C. diff. Radio by

 

cdiffRadioLogoMarch2015

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. Survivors Possess the Warmth and Light For Others

Posted in Inspiration, support by

candlelantern

Winter is in full force now, the colder, shorter days of January remind us of the warmth and light that so many individuals yearn for, but sadly cannot find.

Do you know of someone in need?  A spouse, child, parent, neighbor, or co-worker, who may be struggling right now with loneliness, doubt, fear, or fighting a C. diff. infection? Maybe they have lost their job, their home, their health, their family, a loved one………….

As a C. diff. survivor you possess the warmth and light that another so desperately needs.  You can turn winter’s drab branches into the bright blooms of spring.  How?

You can share your story and suggestions with them!  You can bring them light far brighter than any they can imagine – you are the light of hope for others.

By your participation in the C. diff. Survivors Alliance Network – you are a survivor’s light.  It is a gift that is given and received each and every day here at the C. diff. Survivors Alliance Network and C Diff Foundation.  It is countless inquiries, emails, phone calls, personal correspondence, visits from a CDF Volunteer and the support you share through your stories that give others the hope they so desperately need.

Here is an emotional note received from a fellow C. diff. Survivor:

Dear C Diff Foundation, Your letter and information you shared has re-ignited the sparks of hope within me which had long been dormant and cold, overwhelmed by grief, trauma, and losses. Too much sickness, too little happiness.  I had to take a deep breath to hold back the tears upon receiving the support you have all given me.  It was more than I had hoped for.

This is the kind of life saving impact that you have here at the C. diff. Survivors Alliance Network.

Please continue your participation on our site this year as a guiding light for others to see. We invite you to send your stories, suggestions, and healing words ………  a glimmer of light and hope from and for a fellow C. diff. survivor.

www.cdiffsurvivors.org

Hope For The Holiday Season

Posted in Healing by

candleThere Is Hope For The Holidays

 

If you or a loved one has been affected by a catastrophic illness or the fight of combating a C.diff. infection, or any long-term illness, the holiday season might not feel like the “most wonderful time of the year.”

 

Instead of joy, one may be struggling with sadness, grief, or anxiety that you won’t be spending the holidays in your own old fashion ways. There may be worries about money, time, or energy to partake in the holidays. There are ways to help make the most of the holiday season.

Begin with setting realistic goals, starting new holiday traditions, and calling for help when you need it is the first step in helping one to cope. Below are several tips from mental health experts that we hope will be useful to anyone in distress while fighting any illness.

Set Realistic Goals: This may not be the best holiday but with a positive outlook, and the support of family and friends, one can still make the most of it. Adapting to setbacks after or during an illness can cause stress, anxiety, and sadness. Try to be realistic about gift-giving and affordability and what can be done around the holidays, and share your thoughts with friends and family. Being honest about feelings and the present circumstances can help you better cope and give everyone the chance to have a better understanding. Make time to have a conversation will be very beneficial.

Start New Traditions: If you are celebrating the holidays away from your own home or away from loved ones, start a new tradition to help yourself and your family adjust to the changes. Activities like singing holiday songs or reading books aloud can help you maintain a positive outlook. Trying something new can create positive results. The new traditions will help create something special.

Surround Yourself with Support: The holidays can be a difficult for adults and children. When an individual is feeling down, lacking energy, in pain, combating an infection of any kind – one tends to isolate themselves. Do the best to avoid too much alone time, and talk to someone about how you are feeling. You are not alone and there are local numbers available in all areas to call for confidential crisis counseling and emotional support.

CONTACT USA (CUSA) is a network of crisis intervention helpline centers across the nation providing help by telephone and online chat for those in need of help.

http://www.contact-usa.org/programs.html

 

Treat Yourself with Care: It is important to pay attention to your own needs and feelings. Doing so will help you cope with stress caused by the holidays. If you are a parent or caregiver, it is important for you to take care of your needs first. Then you will be better able to take care of those who depend on you.

Reach Out for Help: Recovery takes time after a loss and even an illness – it is common to feel a lot of different emotions – anger, sadness, anxiety, confusion, guilt, and bitterness.  You are not alone.

 

Take it one-day-at-a-time………. live life in the moment and take it one step at a time.