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

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

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