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

Surviving C. diff. Infections (CDI) – Knocked Down But Not Out

cdiffbody

A C. diff. Infection may have knocked us down – but not out; Left us crying but still breathing, Broken us but made us braver than before.

We’re still strong enough to survive this and we will!

 

 

C. diff. Survivors Possess the Warmth and Light For Others

candlelantern

Winter is in full force now, the colder, shorter days of January remind us of the warmth and light that so many individuals yearn for, but sadly cannot find.

Do you know of someone in need?  A spouse, child, parent, neighbor, or co-worker, who may be struggling right now with loneliness, doubt, fear, or fighting a C. diff. infection? Maybe they have lost their job, their home, their health, their family, a loved one………….

As a C. diff. survivor you possess the warmth and light that another so desperately needs.  You can turn winter’s drab branches into the bright blooms of spring.  How?

You can share your story and suggestions with them!  You can bring them light far brighter than any they can imagine – you are the light of hope for others.

By your participation in the C. diff. Survivors Alliance Network – you are a survivor’s light.  It is a gift that is given and received each and every day here at the C. diff. Survivors Alliance Network and C Diff Foundation.  It is countless inquiries, emails, phone calls, personal correspondence, visits from a CDF Volunteer and the support you share through your stories that give others the hope they so desperately need.

Here is an emotional note received from a fellow C. diff. Survivor:

Dear C Diff Foundation, Your letter and information you shared has re-ignited the sparks of hope within me which had long been dormant and cold, overwhelmed by grief, trauma, and losses. Too much sickness, too little happiness.  I had to take a deep breath to hold back the tears upon receiving the support you have all given me.  It was more than I had hoped for.

This is the kind of life saving impact that you have here at the C. diff. Survivors Alliance Network.

Please continue your participation on our site this year as a guiding light for others to see. We invite you to send your stories, suggestions, and healing words ………  a glimmer of light and hope from and for a fellow C. diff. survivor.

www.cdiffsurvivors.org

Hope For The Holiday Season

candleThere Is Hope For The Holidays

 

If you or a loved one has been affected by a catastrophic illness or the fight of combating a C.diff. infection, or any long-term illness, the holiday season might not feel like the “most wonderful time of the year.”

 

Instead of joy, one may be struggling with sadness, grief, or anxiety that you won’t be spending the holidays in your own old fashion ways. There may be worries about money, time, or energy to partake in the holidays. There are ways to help make the most of the holiday season.

Begin with setting realistic goals, starting new holiday traditions, and calling for help when you need it is the first step in helping one to cope. Below are several tips from mental health experts that we hope will be useful to anyone in distress while fighting any illness.

Set Realistic Goals: This may not be the best holiday but with a positive outlook, and the support of family and friends, one can still make the most of it. Adapting to setbacks after or during an illness can cause stress, anxiety, and sadness. Try to be realistic about gift-giving and affordability and what can be done around the holidays, and share your thoughts with friends and family. Being honest about feelings and the present circumstances can help you better cope and give everyone the chance to have a better understanding. Make time to have a conversation will be very beneficial.

Start New Traditions: If you are celebrating the holidays away from your own home or away from loved ones, start a new tradition to help yourself and your family adjust to the changes. Activities like singing holiday songs or reading books aloud can help you maintain a positive outlook. Trying something new can create positive results. The new traditions will help create something special.

Surround Yourself with Support: The holidays can be a difficult for adults and children. When an individual is feeling down, lacking energy, in pain, combating an infection of any kind – one tends to isolate themselves. Do the best to avoid too much alone time, and talk to someone about how you are feeling. You are not alone and there are local numbers available in all areas to call for confidential crisis counseling and emotional support.

CONTACT USA (CUSA) is a network of crisis intervention helpline centers across the nation providing help by telephone and online chat for those in need of help.

http://www.contact-usa.org/programs.html

 

Treat Yourself with Care: It is important to pay attention to your own needs and feelings. Doing so will help you cope with stress caused by the holidays. If you are a parent or caregiver, it is important for you to take care of your needs first. Then you will be better able to take care of those who depend on you.

Reach Out for Help: Recovery takes time after a loss and even an illness – it is common to feel a lot of different emotions – anger, sadness, anxiety, confusion, guilt, and bitterness.  You are not alone.

 

Take it one-day-at-a-time………. live life in the moment and take it one step at a time.