Tag Archives: Nursing

C. diff. Patient Experience — Never Giving Up Hope While Advocating For A Family Member

Posted in Survivor Experience by

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. Global Tele-Support Program Welcomes C. diff. Survivors, Patients, Families, Clinicians and All

Posted in Healing by

CdiffGlobalSupportFThe  C. diff. Global Community Tele-Support  program was developed for patients diagnosed with this gastrointestinal infection, for their families, clinicians, C. diff. survivors continuing their recovery from a prolonged illness and any individual seeking support and information are welcome to register.

 

 

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.

These tele-support sessions are focused on:
Nutrition, Mental Health, The Who – What – Where of C. difficile infections,
Fecal Microbiota Transplant (FMT) general information, and more.

The support sessions are lead by fellow-C. diff. Survivors and Healthcare Professionals
with first hand experience and knowledge of topics being discussed.

This program is beneficial to families, patients, and healthcare professionals alike.

Please feel free to offer this program information to others to listen in or participate.
Share the page with friends/family members afflicted with a C. difficile infections
and many other long-term illnesses.

This program is free of charge and available Nationwide and is accessible from 57 Countries.

*To view the complete Country/City Listing please visit the C Diff Foundation Website http://www.cdifffoundation.org  and it can be located under the Top Tab Heading “C diff Support.”

 

Support is never singled out to one diagnosis and is only a phone call away

For the month of  MARCH  the following  Support Sessions are available:

Monday, March 7st:  Host – Angela Martin, a  retired healthcare professional and
fellow-C. diff. Survivor.  Topic:  The session will provide general  information and support related to Fecal Microbiota Transplantation (FMT) as an alternative and promising treatment (not yet FDA approved with clinical data pending), for C. difficile infections (CDI).  Discussions will be focused on information for pre- and post-FMT and failed FMT’s for patients, families, and clinicians worldwide.   Join Angela’s support session on the first Tuesday each month
via: Teleconference at 1:00 p.m. Central Time

Wednesday, March 9th: Host – Lisa Hurka-Covington, a fellow-C. diff. Survivor.
Topic: The session will provide mutual support related to depression and anxiety created by long term illnesses.  Join Lisa to discuss the importance of supporting mental health with physical healthcare on the second  Wednesday each month via: Teleconference at 2:30 p.m.
Eastern Time

Friday, March 11h: Host – Scott Battles, a fellow-C. diff. Survivor.   Topic: The session will provide answers to questions with the introduction to a C. diff. infection.  Join Scott with fellow patients, families, and C. diff.
survivors on the second  Friday each month  via: Teleconference at 7:00 p.m.
Central Time

Colorado Physical Venue Support Group:  Colorado C. diff. Support Group,  Hosted by  a fellow-C.diff. Survivor, Roy Poole,  on the Third Tuesday of each month.  The session will provide discussions about C. diff. introduction, C. diff. Research and development in progress, and hope.  Join Roy and fellow patients, families, and C. diff. survivors  on March 15th at  the Arvada Covenant Church,  5555 Ward Rd , Arvada, CO from 5:30 p.m. – 7:00 p.m
Mountain Time.

Thursday, March 17th: : Host – Karen Factor, MS, RD   Topic: The session  will provide discussions focused on  Nutrition during a C. diff. infection (CDI) and how to manage nutrition and hydration.  Join Karen  the third Thursday each month  via: Teleconference at 7:00 p.m.
Eastern Time

Monday, March 28th: Hosts – Dr’s Caterina Oneto, MD & Dr. Paul Feuerstadt, MD
Topic:  Doctors Oneto and Feuerstadt will discuss C. difficile Infections; The What, Where and How .  There will be opportunities to ask a  brief question to the physicians.  We appreciate Dr.’s Oneto and Feuerstadt for donating their time to discuss C. difficile Infections and to provide information regarding prevention, treatments available, and environmental safety products available.   Join their support session via: Teleconference at 6:00 p.m
Eastern Time

NOTE:  The Physicians will not prescribe, diagnose, or provide medical assessment answers to any individuals participating in their support session.  Please contact the Physician providing care for a C. diff. Infection or other diagnosis that are being treated.    Thank you.

To register for any of the above sessions please provide us with the following information and  you will receive an e-mail in return with the support session Teleconferencing number and Conference ID number.

Or Telephone the office to register   U.S. Hot-Line:  1-844-367-2343,
International: 1-919-201-1512

Thank you for providing your Support Session Choice  to participate in a community support session.

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

 

Warm Holiday Greetings From the C diff Survivors Alliance Network

Posted in support by

chrsitmascardnal

 

The holiday season is upon us; A time to share warm holiday greetings while reflecting upon the many individuals combating a C. difficile infection.

We especially call to mind those who have passed away from a Clostridium difficile infection and/or
C. difficile involvement while fighting other diagnoses simultaneously.

 

 

The all-encompassing nature of chronic illness and its disruption of life and plans can elicit a wide range of emotions. These responses include: stress, grief, anger,fear,depression, and anxiety.  Be kind to yourself.  Take time for you during the holiday season.

Try experimenting with different ways of managing stress and painful emotions. When you find a technique that works, try to incorporate it into your daily or weekly routine. Some ideas include exercising, walking, yoga, listening to music, deep breathing exercise, meditation, cooking, reading, writing in a journal, and spending quality time with family and friends.

We would like to take this opportunity to say that during the year it has been truly appreciated to stand along-side the many patient focused and educational organizations, healthcare professionals, and scientists researching and developing new preventative measures, and treatments to combat C. diff. infections along with the long list of  “superbugs.”

Through continued education and advocating for C. diff. infections and Healthcare-Associated Infections (HAI’s) positive effects are taking place in raising awareness  in prevention, treatments, and environmental safety worldwide.

In 2016 we look forward to releasing newly developed tools for patients, “C. diff. Survivors,” families, healthcare professionals. and residents in every community while  working toward a shared goal in witnessing a reduction of newly diagnosed  C. diff. and Healthcare-Associated Infection (HAI’s) infections.

None of us can do this alone…..all of us can do this together.

Thank you for your continued support and from all of us at the C Diff Foundation, and we wish you and your family warm holiday greetings.

C. difficile Infection; CDI is More than a Hospital Related Cost

Posted in Survivor Experience by
cdifffinancialburden
In 2008 I was diagnosed with a C. difficile infection,also known as C. diff
(Clostridium difficile).  First course of treatment was  metronidazole
and continued on that path of the toss between metronidazole and Vanco for almost a year.
The PCP referred my care over to a local GI group consisting of fourteen Physicians.
During the course of eight months, I had been hospitalized numerous times, had two endoscopies and colonoscopies, weekly visits to the ED where I was treated for severe abdominal pain and dehydration. During the course of eight months, I was assessed by each of the 14 GI physicians, prescribed different medications to treat the ongoing recurrent (nine) CDI’s and excruciating symptoms associated with it. By November, 2008 I had been turnover and referred to Hospice. I had received  last rites by our Parish Priest, however; through the determination of family members the requests for a second opinion referral was made to the hospital, and the  insurance granted the referral moving me away from the immediate area of care.After a wait of four months — the referral moved the care over to a major university medical center,300 miles east of my primary residency. One GI physician assessed the physical symptoms,
conducted a third endoscopy and colonoscopy and proceeded to treat the CDI with
yet another Antibiotic for 10 days. Two weeks after the completion of the antibiotic, another
stool sample was tested for C. difficile toxins A and B, with negative results.
There were noted decreased G.I.symptoms and a recovery was in sight-  finally.
In 2009, November, nineteen  months after being diagnosed
with the first CDI, solid foods were then  being slowly reintroduced as a
clear liquid diet had been prescribed and the only diet tolerated over 18 months.
During that time during poor nutrition and hydration additional diagnosis of malnutrition,
alopecia, muscle atrophy related to wasting, low hemoglobin, low hematocrit,
vitamin D  deficiency developed while a daily caloric intake of less than 300 calories continued.
After two years of working with four Registered Dietitians at the medical center daily caloric intake
has increased with recovery of most of the new diagnosis which developed during the CDI.
During the active phase of the CDI and post CDI, the G.I. symptoms continued; CDI colitis resulted with
an overall weakened physical state.  In 2009, physical therapy was implemented
by the PCP for endurance and strengthening which continued three times a week for
four months. This intervention also delivered co-pays causing additional patient expenses.
From the first diagnosis in April of 2008, the financial burdens were well underway. The inability
to work during the active phase of CDI, PTO time as sick time, FMLA was
implemented, which is unpaid time off. And then the leave time expired but the
symptoms of the CDI continued. I was left with no other choice than to resign
from my five year permanent employment on the TCU unit at the acute care facility,
an organization I truly enjoyed working with. In late 2009, my husband and I
relocated and expected nursing positions where the G.I.  physician treated
and cured the first CDI. We began orientation process, yet shortly after I began, I
was unable to maintain the pace as the daily G.I. symptoms continued resulting in
yet another resignation and major disappointment.
Co-pays needed to be met for continued treatment. Physicians and pharmaceutical
diagnostics, emergency room visits, so between 2008 and 2010, it resulted in utilizing savings, retirement funds,
investment funds, IRAs, and everything that we had saved to carry on and cover the
salary lost due to this  infection  a  CDI. the bills did not stop but my
ability to work did. The CDI resulted to more than a physical impairment
In 2011, back to  working world.
It took two years to recover from the 2008 diagnosis of a C. difficile infection.  Now I was feeling stronger, I thought no problem, I can do this even living with the CDI colitis,  which only occurs after eating or drinking.  Employment was well underway with working 12 hour shifts as long as I remained NPO.  After three months time of employment, the G.I. symptoms began changing and symptoms were increasing. There was an increase in abdominal pain, diarrhea, regardless of PO intake or not. There was  malaise, fatigue, severe back pain, and the new PCP, assessed, with knowledge of the history
immediately ordered a stool specimen (PCR) for C. diff.
October 2011, PCR results, positive. Positive again for CDI. This was a bad joke!   Pharmaceutical
treatment, Vanco capsules 250 milligrams , with alterations in dosages and duration during
this antibiotic treatment. The course of treatment continued after each recurrence,
which was nine times – until a negative stool test was received a year later in October 2012 , then
followed up with a Movi-prep ,which is an ordered prep before colonoscopies.

The second CDI resulted with another resignation of employment.

The pharmaceutical co-pays were greater than or equal to $1000 each prescription.
There were co-pays for diagnostics, emergency room visits,  PCP’s and specialists.
Between 2011 October and November 20 12, out of pocket healthcare expenses were greater than $15,000.   There went the savings account once again.
Patients without pharmaceutical benefits pay the cash price this came of course from the local pharmacy of   $2704.99 for the Vancomycin capsule  250 milligrams three times daily for 14 days or  Fidaxomicin 200 milligrams twice daily  for 10 days with an out of pocket cash expense of $3370.49
The non-financial losses such as psycho-social changes known to be created from this
infection, as any long term illness and diagnosis, it  is the lack of productivity, not lack
of creativity, it is the inability to attend family functions, unable to participate in social
events, the role reversal from being a very independent individual, to becoming
totally dependent on others for housekeeping chores, all the way to financial assistance.  It’s the unexpected losses, the unplanned catastrophic events that devastate patients and families alike.  No one asks for an infection that doesn’t go away!  No one plans on loosing in life from an infection that can not remain  resolved by medication.
The phenomenal feelings of frustration and disappointments lead to the determination
to make lemonade out of lemons.
Here it is 2014 and the post-CDI colitis remains on a daily basis.
Life is forever changed for thousands of patients being treated for a CDI.
A C. difficile infection is more than just an infection.  It has a greater impact than just
the hospital related costs associated with it – lives are forever changed.
C diff. survivor