MJ's Story

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MJsSupport
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Posts: 65
Joined: Sat Aug 23, 2014 1:20 pm

MJ's Story

Postby MJsSupport » Sat Aug 23, 2014 6:12 pm

Hello, All, I am MJ's partner of 16 years, and I'm sharing her story of c-diff in hopes it may help someone else.
MJ is a 66 year old female (extremely computer averse!) who is now entering her 10th month of dealing with c-diff.
Let me start by saying that prior to the occurrence of c-diff, MJ had not be a healthy person for a good long time, possibly even her entire life. Prior to my meeting her she nearly died from Crohn's Disease (undiagnosed for many years), she has had cancer of the parotid gland (acinic cell), suffers from tri-geminal neuralgia, and also has severe GERD. Honestly, this is just the tip of a very large iceberg.
A year ago September she began feeling extremely weak, and got to a point (fairly quickly) where she could no longer walk because her legs simply wouldn't support her. I ambulanced her to the hospital, where she was diagnosed with hyponatremia, likely brought on by a combination of the meds she was taking for her trigeminal neuralgia and drinking too much water.
While in the hospital for resalination (? I may have just made that up, but that's what they were doing for her), she tested positive for a UTI. She was given a broad spectrum antibiotic, maybe Cephaloxin, and sent home after 48 hours. The UTI went away, and though she said she wasn't feeling very well, I thought she was okay. A week after the first hospitalization, we went shopping and had planned to go out for lunch. After shopping, MJ said, "I'm tired, let's just go home." If you knew how much she loves eating out, you'd know this should've been a sign to me.
She slept for seven hours straight, and though I was somewhat concerned, I let her sleep and just kept an eye on her.
The next morning (8 days from her original hospitalization), she was again unable to support herself, and I was barely able to get her into the car and to the emergency room. We were actually originally headed to the lab to get her sodium levels checked, but I realized quite quickly that she needed to go straight to the ER.
When we got there, she was whisked in, and within hours had been taken to an isolation unit. At that point, no one was quite sure what was going on, but she'd had a CT-scan of her guts, and an mass of inflammation was noted. They weren't sure if it was a Crohn's flare, diverticulitis, or c-diff colitis at that point, and of course the lab didn't want to test for c-diff because she didn't have D (they will only test if there's D... big mistake). The infectious diseases specialist finally convinced the lab to test for c-diff, and of course it came up positive. At this point she had a fever of 103+, was barely coherent, and in severe pain. The docs, bless their hearts, had decided to treat for c-diff even before the test came back, so both Flagyl and Vanco were started the afternoon of that first day.
Her white blood cell count continued to rise, to the point that 48 hours later she was in sepsis (if that's the right term). I was asked, as her medical power of attorney, to sign permission for them to open her up and remove whatever portion of the colon had to be removed. I felt pressured, and I signed.
Just as they were preparing to take her to surgery, our Hospitalist pulled me aside and told me what the actual stats of her surviving the surgery were, and told me I did *not* have to do this. I opted for her not to have the surgery, we took her off all meds but pain and Vanco (on the off chance it might actually finally kick in) and prepared for her to die.
Miraculously (and though I am not a religious person, I really do believe this was a miracle) after 72 hours the Vanco started working, and her white count dropped by half overnight. In total, she spent ten days in the hospital and thirteen days in rehab building her strength and beginning to walk again.
She continued with the standard Vanco taper, ending the Vanco approximately six weeks after she was first diagnosed.
Exactly two weeks to the day, in fact, practically to the hour, that she stopped taking Vanco, the c-diff came roaring back with a vengeance. She was again hospitalized, this time for four days, and sent home on Vanco, starting at the beginning again, i.e., four doses per 24 hours.
She continued tapering the Vanco, finished the 2nd to last week of January, and exactly one week from the day she stopped, the c-diff came back. She avoided the hospital this time, started back on the Vanco, did a very long taper which ended the last week of April. Shortly after she stopped the Vanco, she was having extreme weakness again, was readmitted to the hospital, was rehydrated and tested (test came back negative, I asked them to do it again, they said no), and sent home. Not two days after leaving the hospital (where she'd received Vanco for two days), the c-diff symptoms were back, and, of course, she tested positive.
This time, the Doc decided to try pulsing the Vanco. Within 48 hours of finishing the pulsing, the c-diff was back, for a 4th time. She was put back on full dosage, with hopes of finding a donor for the FMT before the c-diff came roaring back. This time (fifth recurrence), symptoms began when she got down to two pills per day. Doc said up the Vanco back to three, and since we'd found a compatable donor, to schedule the FMT.
FMT done on Wednesday, August 20th, and now we wait, and hope, and pray. She is exhausted, depressed, and all but actively suicidal. I am trying to keep my head above water and keep my job because we need the excellent health insurance my job provides (and, I happen to like my job, as well).
It has been, and is being, a rough go. Perhaps I'll add more later, but this at least gives you a sense of what the past 10 mos has been like, for me, as primary caregiver, and for her, as c-diff (+ others) sufferer. I'm extremely glad to have found this forum. I hope our experience may be of some help to others. I will keep you updated on the situation.
Thank you so much for listening.

MJsSupport
Contributor
Posts: 65
Joined: Sat Aug 23, 2014 1:20 pm

Re: MJ's Story

Postby MJsSupport » Mon Aug 25, 2014 1:38 pm

I realize I should have clarified something which was pointed out recently by our current Doc. MJs c-diff "recurrences" we're not "new" occurrences, but a resurgence of the original infection. The Doc feels that in MJs case the Vanco was simply suppressing the symptoms of c-diff, not killing it.

MJsSupport
Contributor
Posts: 65
Joined: Sat Aug 23, 2014 1:20 pm

Re: MJ's Story

Postby MJsSupport » Sat Sep 27, 2014 12:40 am

Well, as you may have already read, the FMT done August 18th failed exactly two weeks later. Another night in the ER, more intravenous fluids, and back on the Vanco, again. Doc wants to do a 2nd transplant (she had never had one fail before). At present MJ is finishing off her current prescription of Vanco, which she's been taking 4x per day since August 19th, and then will try a round of Dificid. Doc is not hopeful, but is willing to prescribe it. If the Dificid doesn't work, MJ will go back on Vanco until we can get all of our ducks in a row for a 2nd FMT. This Sunday marks the one year anniversary of the hospitalization & prescription of treatment for a UTI that started this nightmare. I am still hoping for a miracle.

MJsSupport
Contributor
Posts: 65
Joined: Sat Aug 23, 2014 1:20 pm

Re: MJ's Story

Postby MJsSupport » Mon Oct 20, 2014 8:54 pm

Today marks day 6 off Dificid. I will not allow myself to hope unless/until she passes the 14 day milestone. Even then, I will only allow myself a teeny weeny bit of hope. Had hopes dashed too many times in the past 12 months.

MJsSupport
Contributor
Posts: 65
Joined: Sat Aug 23, 2014 1:20 pm

Re: MJ's Story

Postby MJsSupport » Fri Jun 16, 2017 5:06 am

Popping in in the wee hours of the morning for a long overdue update. The difficid did not work, and MJ was again in the hospital for four days on October of 2015. At this point her GI Doc told her she basically had two choices, to go ahead and have her colon removed, or try a maintenance dose of Vanco for as long as it lasted. She's been on the vanco since October of 2015, and amazingly, it's still working. Unfortunately, her quality of life is not great. She's no longer able to go out and about on her own due to limited energy, and she still has all of her other medical issues to deal with, making for a challenging life. We have no idea how long he vanco will continue to work, but we'll take what we can get. A few months ago she finally allowed me to gift her with a subscription to Turner Classic Movies and she spends much of her time contentedly watching old black and white movies. So, she is holding her ground. Some days that's about all she can manage, but as we often say, "Consider the alternative." Be your own advocate, get support wherever you can, and laugh if at all possible. Take good care, everyone.


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