I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Angiepkd on January 03, 2017, 06:55:10 PM
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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. 😅
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I know what I will be looking up today while in the chair.
I never heard of such a thing. And am amazed that someone would have considered this as a treatment, much less, able to have talked anyone into letting him try it!
I had long thought that samll appendix was a simple repository, a bank sort of, saving samples of all the good bacteria that colonize the intestinal tract.
Many raw foods contain much of this same bacteria. Probiotics are a source but there are just so many bacteria it is difficult to believe that one product contain them all.
This is going to take some reasearch. I will be following this thread closely.
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I've read at times fecal transplants can "cure" obesity. Somehow they might help get different organisms into your body which help to process food differently.
https://www.washingtonpost.com/news/innovations/wp/2016/01/14/eating-poop-pills-could-make-you-thin-seriously/?utm_term=.56f1b2943223
and on the flip side might cause obesity:
https://www.scientificamerican.com/article/fecal-transplants-may-up-risk-of-obesity-onset/
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Wow, kiddo, I thought I had heard it all, but a fecal transplant??????? You can be sure there will be a bunch of us following this post. I wish you good luck my dear.
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Are you going with a living donor or are you on the waiting list for a turd? :o
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I knew it, I knew it, I knew it! And I am glad for you! Like I mentioned previously, I saw a news piece of TV about this. It might have been on 60 Minutes or something like that. The journalist followed a couple of fecal donors to learn more about the process, and it's all pretty much like any other donation. The donors are run through the system just like, say, a bone marrow donor would be.
By what I remember, the procedure itself is not much different from a colonoscopy.
The patient featured in this piece made a complete recovery from C.Diff, and I hope you will get the same result.
Did your docs give you any idea when they might do it? I don't want to see you suffer for longer than necessary.
I'm excited for you! :yahoo;
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Angiepkd,
I'm keeping my fingers crossed that this treatment works well for you. From what I've read the success rates curing c diff with fecal transplant are pretty good.
I'm currently dealing with my first c diff infection and it's no fun. I just finished twenty days of flagyl following a hospitalization for gi bleeding and dehydration. Things are still not right but I am praying for a cure vs reinfection.
If this bug comes back I would definitely consider any and all treatment options including fecal transplant.
Best of luck to you. I'll be following your story with great interest.
Kathy
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Thanks, everyone. I am hoping to hear from the doctor today about scheduling the procedure. I laughed pretty hard at the thought of needing a donor, until I saw that they sometimes DO need a donor. I can't imagine asking someone to donate me a turd. I will keep you posted. 😝😝😝
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Since I had time while in the chair today, I Googled "Fecal Transplant - C Diff'
3/4 page of links to articles. I read them ALL.
Wow. Yet in a way, it is so simple.
I have always believed that many of the bacteria within our system beneficial in some way or another. Studies are proving this to be very true.
Antibiotics are not necessarily a good thing. Granted, AB's do kill off many bad bugs, but at the expense of wiping out great groups of 'good bugs'. If this were a war, you could call it 'collateral damage'. Is it worth it? Most often NOT.
Researchers are beginning to identify these bugs, but they are outnumbered. We do not know just how many there are, what each does, and so on.
But they have pretty much proven that a biomass transplant can be an effective treatment for C diff, with a success rate over 90%. And that is worth paying attention to.
There has been a couple of drawbacks. One Lady received a sample from her Daughter. Unknown to Dr's the Dau developed later weight gains, which must have also been transferred to Mom as Mom also gained weight. Strange, but yet another example of the hidden power of these bugs. They can help control, or un-control, other issues with health.
We still have a very lot to learn.
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Very insightful, CharlieB53! I completely agree. When I was researching, I found that the practice of using feces has been around since the 1800's. Although the methods of administering have greatly improved (thank goodness), the results are promising. At this point I am willing to do whatever it takes to rid myself of this cursed Cdiff. The over use of antibiotics has hindered our bodies from being able to heal themselves. Since my transplant, I can't count the number of times and different types of antibiotics I have been placed on. Maybe this "transplant" will work wonders for me. I can't imagine it getting worse. Dialysis is becoming an issue, as I am stuck in that chair for 4 hours+ without easy access to a bathroom. Today was nearly catastrophic lol.
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My years on PD were a breeze. With enough hose I had the run of half the house. Not so much sitting in the chair now.
It appears from most all the articles that you have to find your own donor. Choose wisely. I would suggest a resonably fit person, not too thin, but not over weight either. One that has a great health background, that never seems to get sick, rarely even gets a common cold. This person would most likely have the strongest most well balnced 'colonies'.
Long before Dialysis I was that type. No so much any longer. I attributed my health, or better stated, resistance, to eating everything, and being outdoors, work and play, outdoors a lot. Fishing, hunting, rode my motorcycle to work daily. The constant exposure grew far better tolerances. We could eat as much of whatever we wanted and NOT gain weight. Finding someone you know that fits most of these categories may help increase your odds of success.
I wish you well in your search. I expect this to benefit far more than just getting rid of this C Diff.
Take Care,
Charlie B53
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It just dawned on me, that I had met the perfect candidate donor yesterday. To bad I didn't realize it and get contact information.
This is a 98 y.o. farmer.
What better candidate? His biomas has helped him achieve a ripe old age. protecting him not only from major medical issues but from aging badly as he is still very active.
Think is this as another of your donor requirements. A much older active person that doesn't look near their age.
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It just dawned on me, that I had met the perfect candidate donor yesterday. To bad I didn't realize it and get contact information.
This is a 98 y.o. farmer.
What better candidate? His biomas has helped him achieve a ripe old age. protecting him not only from major medical issues but from aging badly as he is still very active.
Think is this as another of your donor requirements. A much older active person that doesn't look near their age.
no to mention he probably would have no qualms giving you a sample for free, given he probably is not so squeamish he might even be willing to stick it up where the sun doesn't shine as well....
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I spoke to the nurse today about my upcoming procedure. I now know that there is a poop bank that has frozen, transplantable poop in stock. No need to search for a donor. I also learned that fecal transplantation is not covered by insurance, so I have to pay for the frozen poop and the shipping. This will cost somewhere around $500. I got lucky because they quoted me the 2016 price. 2017 prices have increased. I am wondering where they get these donations? And how much are donors paid? This could be a career opportunity for some of the non-working, tiny-house living millennials in our society. :rofl;
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I am wondering where they get these donations? And how much are donors paid? This could be a career opportunity for some of the non-working, tiny-house living millennials in our society. :rofl;
Just think how much this donating would help you get to a zero footprint lifestyle, now even your poo is recyclable to a value added product.
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I hope everyone else shares my sick sense of humor and manages to find all the laughs buried in this pile.
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Wishing you great success with this. I had read about it and at first, like everyone, I couldn't believe it, but you can't argue with success.
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I hope everyone else shares my sick sense of humor and manages to find all the laughs buried in this pile.
Better laughs than corn :rofl;
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Now wait a minute, here!!! $500.00 for your poop delivery? I will send it to you for no charge for the um products itself and until I got CKD, I was the perfect candidate. Went daily within 10 minutes of awakening and that was it until the next day. No constipation and looked far younger than my age. Lets work on this and see what we can produce, um no, how about, come up with? What do you say??
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Thanks for the offer, Jean! I am told donor poop must be local, not shipped lol. My procedure is tomorrow and I am suffering through the "prep" now. They prescribed me 4 liters of golytely G and 4 dulcolax. I called to remind them I am a dialysis patient who doesn't urinate, so drinking that much would fluid overload me to the point I wouldn't be able to breathe. Not to mention, I have C diff, and have been passing WATER for several months. The nurse told me to just drink what I can and take the dulcolax. I have managed to get a liter down, and think I am finished. Hopefully the procedure still works. The stomach pain is excruciating! I would like to think I am tougher than this, but I am definitely not. Praying I don't mess this up by being a baby. I will keep you posted on how it goes. I am thinking it will be a sh*#~y day. :rofl; :rofl; :rofl;
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Good luck tomorrow/today honey, we're thinking of you, and sure it'll go smoothly
Love, luck and strength, Cas
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I got Faith enough for the BOTH of us. This is going to work, but it may take a few days for the bacteria to multiply to an effective level.
I've read a bunch about this. It makes a LOT of sense. I think the team that thought of this and worked it out needs a lot of Recognition for their work. This is going to be HUGE>
Have Faith.
Take Care,
Charlie B53
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I am told donor poop must be local, not shipped lol. My procedure is tomorrow and I am suffering through the "prep" now.
Please get the details on how to become a Poop donor. Never mind::
http://www.openbiome.org/stool-donation/
Who can donate?
Prospective donors must perform a series of health screens to determine their eligibility to donate stool. Here are the most common exclusion criteria for donating:
•Can you make daily trips to our Medford or Somerville location for at least 60 days?
•Will you be 18-50 years old during the donation period?
•Is your Body Mass Index (BMI) < 30?
How does donating work?
It's different than donating blood: our stool donors go through at least two rounds of rigorous screens that involve blood and stool tests. They must drop off donations five days a week for at least 60 days.
As compensation for this commitment, donors receive $40 for every stool they donate.
....
60-Day Follow-Up
After 60 days of donating, donors must undergo a second round of blood and stool screens. If they pass this round of screens, the stool we collected from them will be released and shipped to treat patients all over the country!
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I am so glad that you are finally getting treatment for this awful condition, and I will be thinking of you all day and will be hoping that this works for you. You have been through SO much, and it is time for the gods to have some mercy on you. I am looking forward to hearing a LOT of good news from you!
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Mission accomplished! The procedure went smoothly , and I don't remember a thing (thank goodness)! The doctor and nurses were excellent and I managed to keep my "transplant" for over 4 hours. The whole procedure took less than 90 minutes. Got there at 12:30 and left at 1:45. They gave me a prescription for the probiotic Florastor to help my new bacteria grow. I know it's probably wishful thinking, but I feel better already. I am scheduled for follow up in 4 weeks. The doc said if I am not feeling significantly better in 2 weeks, they will re-test for C diff. His office has a 90%+ cure rate with the FMT procedure. They also track all of their patients for the first year and I am supposed to call if I am prescribed antibiotics during that time. I agree with Charlie B. If this works as well as they claim, it could be a game changer for people with recurrent C diff, and possibly IBS and other intestinal problems. I am very lucky to have a good infectious disease doc who knew about and referred me for this procedure, and a local GI practice that is experienced in FMT. Thank you all for the prayers and good wishes! I truly appreciate it. I will keep you posted on my recovery.
iolaire, I think the donor payment is pretty good. That's $1600 for 60 days. If I lived close and was healthy, I would do it! I wonder if they advertise? There would have to be a lot of volunteers if they did. :rofl;
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It would prove my old man wrong when he once said I wasn't worth shit!
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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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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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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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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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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
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Fantastic to read that Angie!
Keep strong, love, Cas
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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.
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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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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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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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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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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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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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I hope you have a wonderful time!
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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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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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Hope you enjoy warmer weather and...better health! Sometimes you just gotta go uh I mean, get away..
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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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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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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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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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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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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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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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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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Cool. What platform are you building it on?