Reinfection question

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Zapper
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Reinfection question

Postby Zapper » Mon Jun 12, 2017 4:45 pm

Hi guys,
Most of you know me. I'm a multiple relapser with 2 recent FMTs.
Remember that bad coincidence with Norwalk virus after my first FMT? Well, it wasn't related to c diff at the time so I never said anything but I also gave Norwalk to my 74 yr old stepfather which caused him to tear his esophagus (long story short he's in the ICU 35+ days intubated and sedated).
ANYWAY.... found out yesterday he is now c diff positive. And now I am terrified. I'm afraid to visit him. I don't think I can be there anymore. Also, I'm afraid of my family members not following proper isolation procedure and bringing home spores. Is it possible to be reinfected and ruin my FMT progress without antibiotics?

Thank you guys...

beth22
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Re: Reinfection question

Postby beth22 » Mon Jun 12, 2017 7:17 pm

I would call your doctor and ask these questions, but as far as my own experience goes, FMT did not get rid of my c diff spores and I got c diff again after I took antibiotics. Many people have c diff spores in their intestines, but the good flora keeps it in check. It is important that you try to do what you can in order to maintain that good flora. Obviously, no antibiotics unless absolutely necessary. I take probiotics, but if you had a recent FMT, check with your doctor to see what his or her views are on that. Do you live in the same household as your stepfather?

georgina
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Re: Reinfection question

Postby georgina » Tue Jun 13, 2017 12:22 am

Zapper
Although you had a successful FMT , you didn't get rid of all spores , some of them are still there dormant waiting for a chance to be reawakened , usually that happens after a course of antibiotics. In my opinion , I don't think you can get reinfected with something that already lives inside you. And even though you are taking so many precaution measures , you cannot stay away from Cdiff spores as they are all around us , everywhere , in soil , public toilets , on money (and you cannot stay away from those!!). My point is that , even though your family takes the proper hygiene measures when they visit your father in ICU and they perform hand hygiene before entering and immediately after leaving a patient room ,wearing personal protective equipment etc , spores will still be around you , they enter your house weather you like it or not. If we wanna be truly safe , we have to live in a bubble.

amyc
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Re: Reinfection question

Postby amyc » Tue Jun 13, 2017 1:44 am

Wow, I really feel for you. I wouldn't visit him until he stops having D, and wouldn't touch anything in his room when you do go visit. I also wouldn't want family members coming to my house the same day after they visit him. It's OK to advocate for your own health.

Zapper
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Re: Reinfection question

Postby Zapper » Tue Jun 13, 2017 8:26 am

Yes Beth, we do live in the same household. Currently not as he is in the ICU but my mother who also lives with us visits him daily.

Thanks guys. It's hard not to overthink the situation and stress on it. I'm trying my best to focus on the fact I've made it 19 days without c diff and that's the longest time without medicine since November 2015. GI says if I can make it 2 months he would be highly optimistic that I am over it.

linnyg
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Re: Reinfection question

Postby linnyg » Tue Jun 13, 2017 9:15 am

I was told to not go near a hospital for as long as possible, by both my GI and my infectious D doctor- not just because of the c-diff exposure risk, but for other illnesses as well. Getting sick and having to take an antibiotic could be devastating for me. Just stress to your mother the importance of proper hand washing, and not to eat anything when she is at the hospital.

Ril
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Re: Reinfection question

Postby Ril » Tue Jun 13, 2017 9:30 am

Linnyg is probably correct but I would check with the dr who did your FMT. Then you can quote him as well for the reason for not visiting and for reinforcing importance of your mom- or others- following directions you give.

And early hopeful congrats...

Rita

Zapper
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Re: Reinfection question

Postby Zapper » Tue Jun 20, 2017 10:33 pm

GI advised me to stay away and to make family members wash their hands first thing when they come home.
I have not visited him. Fathers Day passed and the family gave me a lot of guilt about not visiting. People just don't understand the risk I guess. Would I like to sign up to lose 19 months of my life to c diff again? No was Jose.
Anyway. It's been rough. He's still there and c diff positive as well.
They switched him to vanco but he's also on antifungals. Don't know if that affects the treatment or not. Really concerned now that it's been 45+ days. Still not progressing.

I would hate to see c diff take his life after just a couple weeks after seeing me battle it for so many months. Sigh!

beth22
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Re: Reinfection question

Postby beth22 » Wed Jun 21, 2017 2:04 am

Can they try Dificid and/or FMT?

Lisa33
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Re: Reinfection question

Postby Lisa33 » Wed Jun 21, 2017 8:45 am

So sorry for what you are going through. You are in a really tough situation, but I think staying away from the hospital is definitely in your best interest right now. I'm sure your family will understand, especially if a doctor is saying it. I feel for your stepdad as well. Hopefully, things will start to improve for him soon. Hang in there. You seem to be on your way in recovery, so that is a very optimistic sign. Sending you and your stepdad well wishes.

Lisa

Zapper
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Re: Reinfection question

Postby Zapper » Wed Jun 21, 2017 1:34 pm

I have been relaying information and advise to my mother but she doesn't seem to see the urgency in the situation.
He has a fever, high heart rate, septic, still having diarrhea. So instead of switching meds... they just put a bowel system in (aka a tube) so that his skin doesn't break down from all the diaper changes.
I'm not there and don't have medical POA so all I can do is tell my mother what I think she should do but she isn't taking my advise at all. Says the doctors know what they are doing... but I beg to differ.

Ril
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Re: Reinfection question

Postby Ril » Thu Jun 22, 2017 12:58 am

You are in a precarious position and without direct contact with the drs can't be sure of the situation and can't do anything except what you are doing. The ICU drs are usually good about calling in ID drs when pts are septic but I'd check with your mom to make sure there is one consulting.

Rita

amyc
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Re: Reinfection question

Postby amyc » Thu Jun 22, 2017 5:46 pm

The year of vancomycin you were on may have given you vanco resistant C diff, which he may have caught from you. If vanco doesn't improve his condition they need to switch to Dificid. The doctors and nurses caring for him need to know that. Have you called the ICU to talk to them? They need to know for their own protection, and to start working on getting approval for the Dificid.

grandma7
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Re: Reinfection question

Postby grandma7 » Fri Jun 23, 2017 6:27 pm

I don't really have a question at this moment.I wanted to thank all for there comments and how something might have helped them.It is Good to know I am not alone, though I would not want anyone to have cdiff.
I am in reinfection mode.Going to start Vanco.I was previously on Flagyl.Seemed to be gone,uh oh it is not!
I originally was on Flagyl and Cipro for diverticulitis. Cipro the culprit for c diff.
Glad there is somewhere to find info and talk,if needed.

Zapper
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Re: Reinfection question

Postby Zapper » Sat Jun 24, 2017 11:01 pm

Yes, he does have a new infectious disease doc (we was transferred to long term acute hospital) they are meeting with my mother on Monday. She still hasn't told them at the hospital. And asking me to basically step back and let her handle this... though she doesn't seem to understand the severity of the situation. He is on day 12 of 14 vanco treatment with a low grade fever, 20+ diarrhea bms, and high heart rate. I am very worried about him and that she is not making the right decisions.
I am not next of kin and really don't have any say. It's just hard to watch. Thanks for all the advice. I really appreciate everything you all do!


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