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Author Topic: Bring on the fecal transplant!  (Read 14307 times)
Charlie B53
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« Reply #25 on: January 10, 2017, 05:08:34 PM »


It would prove my old man wrong when he once said I wasn't worth shit!
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Michelle2016
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« Reply #26 on: January 11, 2017, 11:18:34 AM »

C-diff is acquired from the hospital and through hand contact in most of times. So, make sure to wash hands with soap and warm water before touching food.
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Jean
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« Reply #27 on: January 11, 2017, 02:12:34 PM »

All kidding asside, we will be praying your procedure will work. You will think you are the healthiest person in the world without that. Good Luck Honey.
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One day at a time, thats all I can do.
Angiepkd
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« Reply #28 on: January 11, 2017, 05:24:28 PM »

Feeling like my old self today!  If this continues, I may turn back into a normal person. I went to dinner tonight with friends and ate my whole meal without running to the bathroom after 3 bites. So far, I am impressed.  Thank you for the responses!  Michelle, I am always a hand washer and germ-a-phobe lol. I also scrub everything with bleach. Hopefully there are not any C diff germs left alive at my house, and I have no intentions of ending up back in the hospital!  Fingers crossed I continue to feel this good!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
kickingandscreaming
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« Reply #29 on: January 11, 2017, 05:33:28 PM »

Fingers crossed.  I think I was the first person to suggest a fecal implant for C. diff-- to the response of "Eeww!"  Glad you overcame your eeww factor and I hope the change is a lasting one.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #30 on: January 11, 2017, 06:43:42 PM »

I have to admit my first response was that same 'Ewwwwww!"   But after reading and thinking about it I realized just how much sense this makes.  This WILL become a huge area of study.  Every microbe will eventually be identified, isolated, and classified what it is, what it does, and how it affects a human.  Hopefully one day we will be able to take each one as a slowly desolving pill, that will make it past the stomach before desolving and set up a colony to help everyone that needs it.

Like I've always sai.  We still have so much to learn.  But it has begun.   Finally.






sp mod Cas
« Last Edit: January 12, 2017, 12:35:45 AM by cassandra » Logged
cassandra
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When all else fails run in circles, shout loudly

« Reply #31 on: January 12, 2017, 12:38:27 AM »

Fantastic to read that Angie!

Keep strong, love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kickingandscreaming
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« Reply #32 on: January 12, 2017, 11:36:08 AM »

Good dog!

Man's best friend, bacteria's worst enemy: dog sniffs out superbug in Canada hospital

Angus the English springer spaniel is believed to be only
canine hospital employee in the world trained to sniff out
notorious bacteria Clostridium difficile

Hospital ID badge dangling from his neck, Angus considered the empty bed in front of him. After a few strong sniffs, he moved on.

Nearing the next bed, his floppy ears perked up before he stopped dead in his tracks, tapping his paw and eyeing his handler expectantly.

The two-year-old English springer spaniel is believed to be the only canine hospital employee in the world trained to sniff out the notorious superbug Clostridium difficile, or C difficile.

The seeds of Angus’ unlikely career were planted three years ago, after Teresa Zurberg, a Vancouver resident, suffered a C difficile infection. Her bout with the bacteria – which attacks people whose immune systems have been weakened by antibiotics – left her in the hospital for five days and she lost 20 pounds.

-snip-

Hospitals normally use ultraviolet light to find the bacteria, but Angus can move much more quickly and efficiently through rooms. Once he detects the bacteria, the area is cleaned with a robot that uses ultraviolet light to disinfect 99.9% of the C difficile spores.

-snip-


Read more: https://www.theguardian.com/world/2017/jan/12/clostridium-difficile-infection-canada-dog-detective
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #33 on: January 12, 2017, 04:57:38 PM »


Angus can save a lot of man-hours for that hospital.

I know the VA Columbia has one of those really neat 'zapper' machines specifically designed to kill  ALL bacteria, including the notorious C-Diff.  The Guy that operates it has to 'clean'  EVERY room as they are emptied before the next patient is allowed in.  This leaves a big backlog of empty rooms for him to clean before another patient may be admitted.  This machine is VERY expensive.

Having a dog like Angus could save a huge amount of cleaning time and clear many of these rooms for use with much greater speed.

Someone had a great idea, and credit needs to be given to Hospital staff for recognizing the importance and implementing Angus to help.
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Angiepkd
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« Reply #34 on: January 12, 2017, 09:02:34 PM »

The dog is an excellent idea!  I have felt so awful the past few months and attributed it to my transplant failing, strong anti-rejection meds and being back on dialysis. I had no idea it was mainly the C diff causing my issues. I felt like I was going to die, and half the time was willing to, just to get some relief. Since the fecal transplant, I am feeling so much better!  I cannot imagine suffering through this as an older or sicker person.  I hope the research continues until no one has to get this horrible ailment!  And we have got to find a more cost-effective way to get the donor stool. Not everyone can pay $500, and my doctor wouldn't do the procedure until I paid up.  I did read that the poop bank my doctor used has pills available, but they are more expensive and have a lower success rate.  I have to wait 4 weeks before being declared "cured", so I booked a flight to Florida on Tuesday. If I have to wait, I want to wait where it's warm!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
MooseMom
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« Reply #35 on: January 13, 2017, 09:00:45 AM »

Fingers crossed.  I think I was the first person to suggest a fecal implant for C. diff-- to the response of "Eeww!"  Glad you overcame your eeww factor and I hope the change is a lasting one.

Yes, you were, k&s!  I was so surprised and happy that someone else had heard of this procedure and was not put off by the ewww factor.  When you think about it, the whole idea of having a dead person's organ plopped into you can be seen as having a major "ewww" factor. 

Angiepkd, I am thrilled to hear that you are feeling better and am hoping that this transplant will effectively cure you.  I know I've been rabbiting on about the documentary I saw on this subject, so after a quick search, I found it on YouTube.  It was on an episode of Vice on HBO.

https://www.youtube.com/watch?v=e_dF1N-Ckbw

Keep us updated!!  I'm so excited for you!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Michelle2016
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« Reply #36 on: January 13, 2017, 12:02:30 PM »

Hi, Anglepkd:

Welcome to Florida. Winter is over. Today's temp is 80/60. I wear shorts. It will be the same in next 10 days.
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Angiepkd
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« Reply #37 on: January 13, 2017, 06:46:01 PM »

I will check it out MM!  Thanks!  Michelle, I can't wait to get warm.  Flying out Tuesday afternoon. As a special surprise, my daughter-in-law and two grandkids are coming with me!  Not looking forward to flying with a two and one year old, but the flights to Orlando are always full of screaming kids, so my crew should fit right in :lol;  I am a little nervous about the new dialysis center. They could only fit me in on third shift. Fingers crossed the people are good and the place is clean!  Lots of activities planned with the kiddos, so the nice weather will be awesome!  Hoping for some boat time and outdoor fun.
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
MooseMom
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« Reply #38 on: January 15, 2017, 08:58:38 AM »

I hope you have a wonderful time!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Charlie B53
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« Reply #39 on: January 16, 2017, 06:27:27 AM »


The Video does make some good points.  DIY'rs , I don't think I approve but it is a consideration for those that are not willing to pay some of the prices yet.  Hard telling how long before the Insurance Industry accepts this treatment and covers all expenses.

I don't doubt for a minute that there will be many afflictions that may be improved if not cured altogether, once more research is done.  It is going to take a lot of time and study to get there.
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smartcookie
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« Reply #40 on: January 16, 2017, 12:11:10 PM »

This seems like a good place for a poo joke... How does a mathematician deal with constipation?


He works it out with a pencil!   :bandance;  My patients love that joke! 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
PrimeTimer
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« Reply #41 on: January 16, 2017, 06:08:45 PM »

Hope you enjoy warmer weather and...better health! Sometimes you just gotta go uh I mean, get away..
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Jean
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« Reply #42 on: January 17, 2017, 10:40:18 PM »

Dear Angie,

Just this past weekend I found out my beautiful grand daughter has C-Diff and has been terribly ill, so of course, I was able to talk to her about it intelligently. How I would have loved to donate to her, but all of my ailments would have knocked me out of the park. Most people, myself included are so ignorant about this disease that we know nothing. So, thanks for your input, I will spread it every where I can
So, have a good time in Florida and come back all rested.

Jean   :flower;.
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One day at a time, thats all I can do.
MooseMom
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« Reply #43 on: January 18, 2017, 08:05:48 AM »

Oh Jean, I hope your granddaughter is OK!  I'm so sorry to hear she has been ill.  Please let us know how she is doing!  :grouphug;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Angiepkd
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« Reply #44 on: January 18, 2017, 08:08:12 PM »

Thank you all so much!  I hope people will benefit from information about fecal transplantation as much as I did. I feel awful for your granddaughter, Jean. Hope she gets better fast. C diff is no fun.  Thank you all for the funny comments and joke, too.  You gotta laugh about this stuff!  The weather in Florida is perfect, and my first D treatment was fine. It's a much bigger center than I am used to, but no issues, so I am very thankful.
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Charlie B53
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« Reply #45 on: January 19, 2017, 05:39:55 AM »


Ran into G'son's Kindergarten Teacher Lady in front of Wal Mart yesterday.   She ended up retiring very early with many intestinal problems.

Told her to Google Fecal Transplant and to read EVERY article as there is only the one page.   There may be hope for her yet.   She is way too young to have a long life afflicted with chronic diarrhea.


I hope it can help her.
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babycake
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« Reply #46 on: July 02, 2017, 03:55:02 PM »

i have never heard of a fecal transplant
nothing like that was brought up
that could be, that i dont qualify for
a kidney transplant
and  my heart doc wouldnt even consider
to replace  my heart valve it to much
of a high risk
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kickingandscreaming
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« Reply #47 on: July 02, 2017, 04:45:53 PM »

This is not a surgical transplant, and it is not something most conventional doctors promote. And insurance doesn't cover.  But it seems to work.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #48 on: July 02, 2017, 05:26:27 PM »

This is not a surgical transplant, and it is not something most conventional doctors promote. And insurance doesn't cover.  But it seems to work.
Fecal transplant is gaining acceptance in the mainstream medical world, and Blue Cross covers it when indicated: https://www.bcbsnc.com/assets/services/public/pdfs/medicalpolicy/fecal_microbiota_transplantation.pdf

I found another company that covers it after 1/1/15: https://www.cgsmedicare.com/partb/pubs/news/2015/0215/cope28449.html
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Check Us Out At FindAKidneyDonor.Com

« Reply #49 on: November 18, 2017, 03:25:45 PM »

My Cdiff has been back for a couple of weeks now.  Currently on another round of vanc, but not helping. I had an appointment with the infectious disease Doctor today, and he referred me to a specialist for a fecal transplant. Yes, you heard that right....fecal transplant. I glanced at the articles you all sent me, but never dreamed I would have to actually do this. I will know more about what method the specialist will use when they set up my appointment, but none of the methods look especially pleasant. On a lighter note, we did have a really good laugh about the absurdity of this whole thing. I can't get or keep a kidney transplant, but fecal?  Of course I can lol.  If it gets rid of the Cdiff, though, I am all in. I really couldn't make this stuff up. 😅

Good luck buddy. I've been dealing with C Diff for years and am still trying to get a fecal transplant.
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