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

Clostridium difficile (C. diff.) Infection; A Patient’s Spouse Perspective Living Through a “C. Difficult” Nightmare

HandsTouchingSun“Through better or worse, richer or poorer, through sickness and health — we survived not one but two separate C. diff. infections”  stated Angelo Ortiz, a C. diff. Survivor.

*the patient’s name has been purposely omitted for privacy.

C. difficult is an excellent term used to partially describe
the experience living through a Clostridium difficile infection with a partner,
a soul-mate, or a significant other.

A way of regarding this situation objectively ; a point of view shared with fellow C. diff. survivors also walking this path with their loved ones.

Interviewer:  Angelo, did you know what a Clostridium difficile infection was, also known as C. diff. ?

Angelo:  Yes, being in Nursing I have cared for patients diagnosed with C. diff. infections.  However; I did not surmise that my wife was suffering from this infection.  Usually patient’s bowel movements will have a significant obnoxious odor that can alert healthcare providers to surmise a C. diff. infection.  This is not always the case anymore.  Over the past decade healthcare professionals have noticed changes in symptoms, treatments, and the overall microbiology aspects of this infection.  The lack of odor in patients diagnosed with a C. diff. infection is one of them.

Interviewer  Had your wife been on Antibiotics or in a hospital being treated for an infection prior to being diagnosed?

Angelo:  No, she was not ill, had not been on antibiotics and not been a patient in a hospital.  Nevertheless; working in a hospital and being in close proximity with patients being treated for this infection may have played a big role in her acquiring it.

Interviewer:  Did the healthcare environmental operations utilize a EPA Registered product with a
C. diff. kill claim?

Angelo:  In 2009 Clorox Commercial Solutions Ultra Clorox Germicidal Bleach ® was named the first and only product to obtain Federal EPA registration for killing C. diff. spores on hard, non porous surfaces when used as directed.  Before then there weren’t any products available addressing
C. difficile spores and C. diff. spore elimination through disinfecting.  Since that time, we have come a long way and the available products EPA Registered addressing C. diff. and also UV Disinfecting systems available to healthcare facilities fighting major healthcare-associated infections.

Interviewer:  What were the symptoms your spouse was experiencing on a daily basis?

Angelo:   Where do I begin?  There was pain, so much pain that it made my heart break.  I cried when she cried and screamed.  Talk about feeling helpless.  Watching my beautiful wife lay curled up in a fetal position in a hospital bed that we had to rent and place in the living room because she was too weak to climb the stairs in our townhouse.  It wasn’t pain she would tell me, it was her intestines twisting and turning and we could hear the whooshing and active bowel sounds.  They were so loud and audible we didn’t need our stethoscopes to access them.  If a half of a sandwich was ingested, it was eliminated within 45 minutes.  Maintaining hydration was a challenge every single day.  The docs had my wife following a clear liquid diet and with each office visit she would tell each doctor assessing her, “I can’t eat, everything I eat just runs right through me.”  They would tell her to not worry about it, stay on the liquids, eat what you can.  There wasn’t a lot of nausea or vomiting, no fever, but there were times where she would shiver and complain of feeling cold.  Falling into malnutrition and also mal-absorbtion also  caused G.I. system complications later on, too.

Interviewer:   What healthcare providers were visited and rendered care?

Angelo:   It took six months of weekly visits complaining of the G.I. symptoms and pain, to receive a concrete diagnosis by the Primary Care Physician.   After three months, after being diagnosed with a CDI and after the algorithm of treatments were not making a difference, the referral to be assessed by a Gastroenterologist came about.   During the next six months my wife was seen by all fourteen Gastroenterologist’s in the one practice without any significant improvements noted under their care.  After the six month of weekly visits and continued changes in medications, the physicians recommended a referral to Hospice.

Interviewer:   Where did the next level of care take you?

Angelo:   A Physician studying Clostridium difficile, suggested getting a second opinion by a Gastroenterologist at Duke University Hospital in N.C..   I met with the benefits coordinator at work who assisted in the process to obtain the approval for the second opinion.   Just to let everyone know, always call the customer service phone number on the back of the ID card and speak to the Case Manager working on the care in progress to learn of “how to” obtain a second opinion or visit the benefits coordinator at work to learn more about this option.  It is good information to know and if it weren’t for the one Physician suggesting this option to us I wouldn’t have a wife to talk about today.

Interviewer:   What was done differently at the new Physician’s office at Duke?

Angelo:   This visit bought my wife her fourth Colonoscopy and Endoscopy, however; we didn’t fight it.  If it was going to help the physician diagnose and treat this infection, we’re all in.   The results were on the positive side, no noted new changes or new diagnosis and another negative Celiac/biopsy was done via: endoscopy.  The Physician made a decision to utilize a medication being clinical studied for C. difficile that was already FDA approved for a different gastrointestinal diagnosis.  The cost of the medication was, as they would show on a menu, $$$$$.  We were extremely happy that this physician had the medication samples available.   Ten days of taking the medication prescribed there were noticeable changes taking place.  There was less bloating, less cramping, a lot less pain, the explosive – watery stools that were >15 x’s in a day were decreasing.  We had not witnessed any positive changes in almost a year.
This was a down right miracle in our book.

Interviewer:   You mentioned the medication expense.  Did you encounter other financial expenses during this infection?

Angelo:   Financial Expenses?   We drained our savings first after my wife was forced to resign from her job.  You can’t work in Nursing when you are tied to the bathroom, they don’t go together really in any job.  You just can’t work and shouldn’t work if you are being treated for an active CDI because it is a contagious infection.  That is why in the hospitals and healthcare facilities isolation precautions are implemented to help stop the spread of the infection.  So we go from being a two income family to a one income family over night.  Is anyone really prepared for that kind of a financial change over night?  The 401K was utilized to cover healthcare costs, prescriptions, co-pays, emergency room fees, specialists, travel, outpatient diagnostics, and the monthly hospital bed rental.  The mortgage was based on our income — joint, the vehicles were purchased separately, there weren’t many monthly recurring bills — it was all of the new bills being created by this illness.   Now we’re faced with the medical bills, and how do we pay for the living expenses all on one salary coming in?  You do what you have to do, we drained all of the retirement funds and the golden nest egg was scrambled.

Interviewer:   How long did it take your wife to get back on her feet and back to work?

Angelo:   It took her almost two years to feel strong enough to re-enter the work force.  From being ill so long and bed ridden from exhaustion, there was physical therapy, there was working with two Registered Dietitians from the hospital to retrain the gut after being on a clear liquid diet for over a year.  There were weekly visits to specialists who were monitor all the systems that were affected by the negative impact of this infection.  Hematologist, Gastroenterologist, Cardiologist, Endocrinologist, and P.T., and so much more.

Interviewer:   Do you have any message that you would like to share with others who are the  spouse/partner/significant other with another diagnosed with a C. diff. Infection?

Angelo:   Sure.   Don’t give up!  There were so many days that were darker than nights and we didn’t think there would ever be a light at the end of the tunnel.  It’s through our faith, our hope, and support of friends who weren’t afraid to visit us, along with reaching out to dedicated professionals and the Foundation’s that work with these professionals that care and know how to maneuver through the thorn bushes that brought us forward and through this nightmare.  We’ll always be dedicated and supportive to the C. diff. community and the C Diff Foundation and their members for their continued help.

 

We thank Angelo for his time and for sharing this journey through a C. diff. infection with a spouse, partner, soul-mate, or significant other.

 

To hear more about C. difficile infection prevention, treatments, clinical studies, environmental safety products and home care —  access  the C. diff. Spores and More Global Broadcasting Network Podcast library and listen to topic experts share educational information focused around C. diff. and other healthcare-associated infections.
please  click on the logo below *

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4-11-16 C Diff Foundation

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

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

 

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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.

 

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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.

 

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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

 

A C diff Survivor Shares Her Journey To Help Raise Awareness

December 2, 2015

Deborah Parsons has shared her C. diff. and Cyclic Vomiting Syndrome journey

through a You Tube Video Slide Show created and posted by Deborah.

Deborah has granted the C. diff. Survivors Alliance Network permission to post this video to promote awareness of both diagnosis.

It is a heartbreaking journey, one that no one should have to endure and behalf of the C Diff Foundation we thank Deborah for sharing this video to share with the general public.

Deborah, an active Volunteer Advocate for the C Diff Foundation,  has raised C. diff. awareness through attending and participating at public healthcare events, and through avenues carved by her efforts and participation and we commend her for never giving up and for fighting her way through these catastrophic illnesses.

Thank you Deborah for your video, and forming another way to Raise C. diff. Awareness, along with awareness of  Cyclic Vomiting Syndrome, and for sharing your story with the world.

We wish you continued recovery and the best in life always.

Angelo Ortiz, Chairperson Volunteer Advocate Program
C Diff Foundation

…………………………………………………..

Hi there

I’m Deb and I’m trying to raise awareness about living with Recurrent C.diff. Infections and Cyclic Vomiting Syndrome.

Please help me by sharing my story.
Sincerely,
Deborah Parsons

https://youtu.be/6d6IwGQFltI

 

 

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

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

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