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