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

 

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

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. 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.