Tag Archives: C diff survivors

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

 

C. difficile Infection (C. diff.); A Survivor’s Perspective with CDI Introduction by Teena Chopra, MD,MPH,FACP,FIDSA,FSHEA

Posted in C. diff. Radio by

Join us on Tuesday, May 26th at 1:00 p.m. EST

C. diff. Spores and More Live Broadcast

www.cdiffradio.com

With Doctor Teena Chopra, MD,MPH,FACP,FIDSA,FSHEA
Associate Professor of Medicine,Division of Infectious Diseases,
Corporate Medical Director,Infection Prevention,Epidemiology,and Antibiotic Stewardship ,DMC and WSU Director,Infection Prevention,Epidemiology and Antibiotic Stewardship,Vibra Hospital

 

Dr. Chopra will lead the discussion with an overview of a C. difficile infection followed by Alba Muhlfeld, and Renata Johnson, C. diff. Survivors both sharing their journey and providing key-points to our global listeners.

 

Unable to listen to the live broadcast?

Access the C. diff. Spores and More Library
www.cdiffradio.com
and listen at your leisure.

 

 

 

C. diff. Spores and More is sponsored by

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

Posted in Loss of a Parent, Survivor Experience by

Flowers22

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. 

 

handwashingnurse

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.

 

cdiffInfControl

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.

 

CandleLostLovedone

Outstanding Article — Georgia Writer’s Battle With Deadly Superbug — Clostridium difficile

Posted in Inspiration, Survivor Experience by

http://specials.myajc.com/fixing-to-die/

We do not usually share articles written focused on C. diffiicle infections, however; this piece is outstanding.

It tells a story of a man – acquiring C. difficile – a fight for his life.

How many of you can relate to this scenario?

YES — we know YOU CAN!

There will be parts of this article that will pull at your own heart strings, your memories will swing back through the closed door of this painful time in your life, and this man on the mend will one day stand shoulder to shoulder with the many of us — a C. diff. Survivor.

We send out our sincere get-well wishes to this patient recovering from all he has endured (C. difficile, Sepsis + more) and let us all keep him and all of us in our thoughts with good wishes and support.

 

C diff Survivors Alliance Network

 

It’s Not All About Twinkle Lights and Bows During the Holidays

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

After battling a year’s worth of illness and nine rounds of Vancomycin antibiotics to rid the body of recurring C. difficile infections — the holiday season was more of a struggle than a joyous time of the year.

 

 

Without working and knowing what a paycheck looked like after a year how was I supposed to celebrate the holidays with family and friends?  The jewels of diamonds and rubies had been sold to pay for the extreme cost of antibiotics to treat this never ending infection, the IRA’s used to keep a roof over our heads, the 401K used to keep the car in the driveway, and the savings accounts emptied to cover co-pays and medical bills.

Life was not as it used to be with twinkle lights and big red bows.  It was looking more like “brown paper packages tied up with string,” (My favorite things Lyrics by Rodgers and Hammerstein).That too became a positive vs a negative as the value of life became elevated and not the values in life that we collect.  Realizing that family and friends also valued the little things like fresh baked cookies over gold trinkets purchased at the local jewelers, and the boxes of home-made ornaments I created hung elegantly on their walls and holiday traditions instead of the boxes of store bought items that I never really noticed them enjoying or using over time.   We put too much emphasis on the gifts during the holiday season instead of cherishing the times together.  Share time, create lasting memories, give love, cherish moments, embrace smiles, enjoy the hugs, and never miss the chance of taking a photo to freeze frame it all.

After being referred to Hospice and introduced to their organization it was an absolute wake up call.  It was a call to LIVE ~ a time to kick up the sand and give it all I could give because there was way too much more to do than lay down.  Don’t ever give up ~ don’t accept every deck you are dealt ~ seek other avenues and keep reaching for the stars.  Our thoughts are stronger than we think they are and our beliefs are the strong hold in life.  As the saying goes, “Begin each day with a grateful heart.”

The holiday season is right around the corner and so are you with your talents and strengths.  Keep the anxiety down to a dull roar and try not to fall into the depression of dwelling on the “have-nots” when you have SO much ~ so much to give of you ~ so much to share with others ~ so much to embrace.  YOU are special to SO many and focus on the true meaning of the holidays ~ it is not about the packages, twinkle lights and bows ~ it is about YOU and about what you are in the world ~  You are a gift to others.

Try to have an enjoyable holiday season — through the losses, through the struggles, through the treatments ~ we understand and walk beside you each day ❤  You are not alone  ❤

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

 

December’s  support sessions are open for registration. Don’t delay

and register for a group today.  Registration is through the C Diff Foundation’s website

http://www.cdifffoundation.org

Cdiff2015CDNCSPostCard

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

Posted in Announcements, C diff Nationwide Community Support Program, support by

CdiffForRelease-1

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 Survivor Sharon Shares Her Journey With Fellow Survivors

Posted in Survivor Experience by

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. 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