Question on FMTs/donors.

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Zapper
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Question on FMTs/donors.

Postby Zapper » Mon Mar 13, 2017 4:01 pm

Hi all,
28 ye old female with 4 relapses. Originally diagnosed in Nov 2015 and haven't been able to kick it since. Was put on 2 250mg doses for 11 months for pregnancy and postpartum as advised by my ID. Did a vanco taper and relapsed again. Now we are moving forward with the FMT.
My question is: those of you that have had the FMTs, did you use a family member donor or use a service like openbiome?
My insurance will not cover the costs of testing for donors (my husband). I don't have any other eligible family members. Just wondering if it's worth the out of pocket cost to see if my husband can be my donor or if I should just request a random pre-screened donor thru a service.

Thanks in advance for the feedback! I don't know what I would do without this site.

Davidtm
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Re: Question on FMTs/donors.

Postby Davidtm » Mon Mar 13, 2017 4:52 pm

Hey, I'm so sorry you're going through this and that insurance won't cover the testing. It should. i had to use my brother for allergy reasons but you could try openbiome or see if the fmt Doctor will use openbiome. They do all the testing for you on their donor stool.
Good luck and hope you beat this soon

roy
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Re: Question on FMTs/donors.

Postby roy » Mon Mar 13, 2017 6:34 pm

If your Drs up for it a couple of white lies and your husbands insurance will pay for the testing.
"Patient exposed to pathogen" might do the trick.
Can't get old without getting crafty;-)

amyc
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Re: Question on FMTs/donors.

Postby amyc » Mon Mar 13, 2017 7:40 pm

Several folks here have had great results with open biome donations, so I wouldn't be afraid to use them if insurance won't cover testing your husband.

beth22
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Re: Question on FMTs/donors.

Postby beth22 » Mon Mar 13, 2017 8:05 pm

My husband's tests were covered. I think the doctor just put D for a diagnosis and all the stool tests were covered. I think D would cover the blood tests for hepatitis, although not some of the others. I used my husband first time, but it was not a good match (unlike our marriage :), but my daughter turned out to be a very good donor. A person living in the same house may not be the best donor anyway, as your husband may have spores even if his tests come back negative. Others have used OpenBiome with good results.

NanciT
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Re: Question on FMTs/donors.

Postby NanciT » Mon Mar 13, 2017 8:21 pm

Same as Beth, GI put a diagnosis and the test for my husband were all covered. Wishing you the best!
NanciT

MKW
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Re: Question on FMTs/donors.

Postby MKW » Mon Mar 13, 2017 8:58 pm

I just had my first FMT on March 2nd, and mine came from OpenBiome. My doctor explained OpenBiome donors go through quite an extensive screening process, and she expressed complete confidence in utilizing them. I probably don't know anyone that would meet the health requirements to donate to OpenBiome. LOL. ...I was tested beforehand I know for a few viruses like Epstein Barr and Cytomegalovirus, because they make sure your donor doesn't expose you if you have not had these. My response to my FMT has been excellent so far. No problems. I am 45. If I were still at an age where I would consider having more children, I probably would have been more inclined to use a personal donor due to very minimal but possible disease risk.

Zapper
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Re: Question on FMTs/donors.

Postby Zapper » Mon Mar 13, 2017 10:55 pm

Wow MKW, I never even thought about the possibility of contracting anything else from a donor. Scary thought but I guess it's worth the risk at this point. I ant take vanco forever!
I just had my first little one 4 months ago. I want another too. I guess we will see how my health goes.
Thank you everyone for the feedback. I'm so new to this (and young-ish 28) and I really don't have anyone in my family/friend circles that understand what this is and the seriousness.

georgina
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Re: Question on FMTs/donors.

Postby georgina » Tue Mar 14, 2017 1:18 am

If you definitely need to have your donor tested for ANYTHING under the sun before proceeding with FMT. If you cannot get him tested ,the safest way to get a good donation it through Openbiome or clinics that use their own donors like :RDS or Mayo.

Zapper
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Re: Question on FMTs/donors.

Postby Zapper » Tue Mar 14, 2017 9:35 am

How long did it take you guys to have your FMT after the positive test? I am still trying to get a hold of my doctor not sure if I need to just schedule the FMT or I need to request an appt first.

beth22
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Re: Question on FMTs/donors.

Postby beth22 » Tue Mar 14, 2017 1:47 pm

I don't think you can just schedule FMt without an appointment, so make the appointment.

MKW
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Re: Question on FMTs/donors.

Postby MKW » Tue Mar 14, 2017 2:02 pm

The GI Doc I was seeing did not do FMT's. I was on a Vanco taper, so scheduled a consultation appointment with new doc that does the procedure. My procedure was scheduled about two weeks after the consultation appointment - so very quickly. You will probably need a formal appointment to discuss the procedure, your donor situation, risks vs benefits, etc. I don't know if how quickly I was scheduled is common though. The doc I saw runs a specialty clinic for C Diff only on Tuesday and she does FMT's all day every Thursday.

Zapper
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Re: Question on FMTs/donors.

Postby Zapper » Tue Mar 14, 2017 3:06 pm

I scheduled my appt and it's 2 weeks out. They say they are really busy. Plus, apparently the donor bank is closed until June. (Sigh). I was really hoping to get this taken care of ASAP but looks like I'll be waiting for a few months.

I am taking vanco while I wait for the procedure.

Purdy
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Re: Question on FMTs/donors.

Postby Purdy » Wed Mar 29, 2017 1:25 pm

My C Diff was so severe that I battled sepsis in the ICU for several days. I relapsed 6 times( 5 hospital stays) and ended up in a FMT medical trial, supervised by a Dr that sits on a couple of CDC boards. I was told, going in to the trial, that my case was so severe that it is s nothing short of a miracle that I had survived.

I had 2 transplants before I saw results, however a side effect was reoccurring uti's. After 4months of being c Diff clear, I ended up positive again. I was put on a long term Vanc plan. I finished the Vanc in Feb of 2017 and have been good thus far. However, I still battle UTIs and they are now thinking that I have innerstatial cystitis. Very painful. In my experiences this is what I've discovered works best for me..cut dairy, caffeine, alcohol, and strongly limit carbs and sugar. No fun but as long as I stick with that diet structure I do fine...if I slip...bladder issues. In all of this joy I also had to have a diseased gallbladder removed and passed several kidney stones. I live in fear of c Diff and am willing to go out of my way to not have to go through the hell I have survived.

After you receive the FMT, make sure that you are drinking Kefir daily as well as taking a daily probiotic. Drink lots of water!!!


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