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.”

 

 

C. difficile Infection (CDI) It’s One Day, One Hour, And One Step At A Time

one-day-at-a-time

Health, defined by the condition of being sound in body, mind, or spirit; especially :  freedom from physical disease or pain.

It can’t be bought, is usually taken for granted, and not easily restored.

 

Being diagnosed with a Clostridium difficile infection (CDI) or better known as C. diff., wasn’t too terrible.  The directions were received from the doctor, medication was ordered and picked up at the pharmacy and recovery was right around the corner.   So we thought.

It’s not an infection  I want to talk about at the bowling alley with my friends, the family doesn’t understand it, not too sure the doc fully understood the road I was about to travel either.

The countless hours began sitting behind the computer searching, reading, freaking out at the copious amounts of negative words describing this bug.

So now I have a pile of information, a sick – sick stomach, bottles of meds, a few bills attached, the jumbo pack of T.P., and an on-line order of products that kill the spores that live in the fecal matter that cause the nightmare.

How in the world did I get this?  Antibiotics?  Out in the community?  While visiting a friend in the healthcare building?  Maybe at the local gym?  Off a contaminated surface somewhere?

The possibilities are many.

It took over three months and three different meds to break the cycle.

Not what they call infected anymore but you tell my G.I. system that.  Still living with the now and then symptoms and upsets.  Never sure when the 100 yard dash is going to take place and always careful about eating out at social functions.  Only four weeks post-C. diff. but I wanted to share a few words with everyone going through this.

Don’t give up and speak up because as the old saying goes the squeaky wheel gets the oil.  Thanks to the C diff Foundation for the information and support.  They understood the pain and suffering when others shunned me and walked away.

Steve C.,   Survivor

 

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

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

 

C diff Survivor Roy P. Shares His Journey With Fellow Survivors

CdiffSurcicorsLOGO2015

In January, the prostate biopsy required both Levaquin and Gentamycin.  One month later, a five-hour oral surgery required ten days of Clindamycin.  Four days after completing the Clindamycin, the C diff symptoms started.

Saw my PCP who prescribed Clarithromycin.  Within three days the diarrhea was worse.  Returned to the PCP, who said I should get to the ER and have lab tests and a CT scan.
One hour after my arrival in ER, I was admitted for C. diff.  I was severely dehydrated. Along with I-V fluids, I got an I-V of Flagyl.  For the next two days, I was connected to the I-V for fluids, but began to eat again, and be able to take the Flagyl in pill form (not an easy thing to do!)
Prior to this event, I had never been admitted to a hospital in my 63 years.  I did not know what C. diff was, nor had I ever heard of it.

On the fourth day, I was released from the hospital and understood I was still infectious.  I continued 12 more days of Flagyl.  Three and a half weeks after the symptoms began, I provided a sample to my PCP who had it tested and the results indicated C. diff toxins were negative.
Since then, I’ve learned more about C. diff and the support available.

I’ve been taking daily probiotics with 10 strains; eating mild foods to allow my colon to recover from the injuries; trying to stick to gluten-free to minimize the challenges to the colon while it heals; and taking inulin fiber to encourage microbe growth.

I sleep well at night, deal with “issues” for an hour or so in the morning, and live a pretty much normal life. I lost a lot of weight during the infection, and I’m swimming and water-walking in the fitness center pool to rebuild those skinny legs. A lot of friends have asked me what happened, and I tell them of the effects of antibiotics, especially when there are multiple applications.  Since most of them are in my same age group, I encourage them to be careful with antibiotics, and to look after their colon and the microbes through probiotics.

My journey’s not over, but I feel I received great medical care at the hospital, have incredible loving support from my wife, and know that there are many people who are there for me.

Surviving C. diff. Infections (CDI) – Knocked Down But Not Out

cdiffbody

A C. diff. Infection may have knocked us down – but not out; Left us crying but still breathing, Broken us but made us braver than before.

We’re still strong enough to survive this and we will!

 

 

Remembering All C. diff. Survivors With Warm Thoughts and Gratitude In The New Year

2014 is coming to a close and 2015 is just a few hours away.CDIFF2015wordss

 

As the New Year approaches, our thoughts turn gratefully to those who have helped us in our progress and the progress of our communities.  It is in this spirit we say, simply and sincerely,  thank you.

 

 

Thank you for everything big and small you do to help make the C Diff Foundation a better resource in the lives of others, providing support, and for joining us in raising C. diff. awareness to the millions of families, healthcare providers, communities, and friends worldwide.

We are a giving Foundation and a lot of that giving is facilitated through each of you.  Giving makes a difference and there are so many different ways to give.  Whether it is through presentations at a conference,  sharing your journey with others, joining the Foundation’s volunteer program, or donating time in November for the “Raising C Diff Awareness” campaign in communities across the globe the partnered efforts and contributions are greatly appreciated. Through the many facets of giving and charitable support, the Foundation’s mission continues to move forward in educating, and advocating for C. diff. prevention, treatments, and environmental safety worldwide.

From all of us to all of you and your families,  we send our best wishes for a peaceful, happier, healthier, and successful 2015!

Thank you and Happy New Year.

C. diff. Survivor; Kristin Evans

Kristin’s C. diff. Survivor Story:
I contracted c.diff. when I had my gallbladder taken out in July of 2012. I was experiencing a lot of abdominal pain and diarrhea but attributed it to my body adjusting without the organ I went to the ER around 21 times over a year and a half before I was finally diagnosed with C.diff.
After that began the real journey, after loosing over 100 pounds in a year which took me from a size 10 to a size double 0 my doctor decided the repeated rounds of Vancomycin were not fighting the infection he suggested a fecal transplant. I was very confident in this procedure as I had only heard amazing and positive things about it.
I had the transplant done and waited a month to be checked again as I was told to by my doctor. I went in and of course the transplant failed. I was then put on more vanco and told to stay on it for another month then they would check me again.
Another 2 weeks went by and I was emergency admitted to the local hospital because my body had begun to shut down and my organs were beginning to fail. I was on full isolation for 2 weeks until the declared me c.diff. free. I was told sent home with a new problem caused by the c.diff. though.
I now had enlarged lymph nodes and they would not go down so I had an oncologist look at them and told me I had a possibility of Hodgkins Lymphoma and was scheduled for a lymphectomy a month later. After surgery I was cleared from cancer but I had contracted c.diff. back because of the surgery.
I was then diagnosed with chronic c.diff. and told we would try another transplant to try and kill the infection that was slowly killing me again.
The second *fecal transplant was again a failure and I was put on vanco for another year before I told my doctor I was going to die if he didn’t help me.
I had survived almost 3 years fighting this battle and my body was physically and mentally drained. I was tired of fighting, so he made the decision to hospitalize me again to try and cure this once and for all. I was in for almost a week before I was declared once again C.diff. free.
It has now been less than a month since my release and I am learning to deal with my new medical problems caused by c.diff. including gastroenteritis, ulcerative colitis, severe chronic IBS and permanent bowel damage.
I have been to the ER a total of 46 times throughout my journey with c.diff. and am still continuing to get my body back to way it needs to be with my weight and my eating which has become difficult due to the bowel damage.
But i will not give up and i will survive and fight this if it ever returns i will not let c.diff. take my life. Thanks for reading my story guys.

C. diff. Survivors Alliance Network Officially Launched

 

CDiffSurvivorsRibbonII

The C. diff. Survivors Alliance Network, an affiliate of the C Diff Foundation,  is dedicated for providing healing support for individuals coping with both physical and mental pain, the complex treatments, psychosocial losses and alterations, and the excruciating grief with complex emotions that accompany the loss of a loved one.
 
We hope that you will find resources here to help you cope with, and eventually heal from, what may well be the worst pain experienced from an infection.