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Author Topic: Bring on the fecal transplant!  (Read 14320 times)
Angiepkd
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« on: January 03, 2017, 06:55:10 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. 😅
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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 #1 on: January 04, 2017, 04:59:44 AM »


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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iolaire
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« Reply #2 on: January 04, 2017, 05:02:51 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Jean
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« Reply #3 on: January 04, 2017, 06:27:00 AM »

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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Simon Dog
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« Reply #4 on: January 04, 2017, 07:09:09 AM »

Are you going with a living donor or are you on the waiting list for a turd?  :o
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MooseMom
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« Reply #5 on: January 04, 2017, 08:28:44 AM »

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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"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."
Kathymac2
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« Reply #6 on: January 04, 2017, 08:30:47 AM »

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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Angiepkd
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« Reply #7 on: January 04, 2017, 09:10:04 AM »

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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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 #8 on: January 04, 2017, 05:36:52 PM »


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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Angiepkd
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« Reply #9 on: January 04, 2017, 06:56:19 PM »

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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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 #10 on: January 05, 2017, 05:15:15 AM »


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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Charlie B53
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« Reply #11 on: January 05, 2017, 05:55:12 AM »


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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iolaire
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« Reply #12 on: January 05, 2017, 06:05:53 AM »


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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Angiepkd
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« Reply #13 on: January 05, 2017, 11:42:43 AM »

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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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!
iolaire
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« Reply #14 on: January 05, 2017, 11:52:50 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Charlie B53
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« Reply #15 on: January 05, 2017, 04:12:23 PM »


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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SooMK
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« Reply #16 on: January 05, 2017, 05:49:29 PM »

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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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Simon Dog
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« Reply #17 on: January 05, 2017, 06:22:25 PM »


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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Jean
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« Reply #18 on: January 07, 2017, 11:22:41 PM »

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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One day at a time, thats all I can do.
Angiepkd
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« Reply #19 on: January 09, 2017, 03:07:38 PM »

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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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!
cassandra
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When all else fails run in circles, shout loudly

« Reply #20 on: January 10, 2017, 04:34:32 AM »

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 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
Charlie B53
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« Reply #21 on: January 10, 2017, 06:10:51 AM »


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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iolaire
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« Reply #22 on: January 10, 2017, 06:43:33 AM »

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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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #23 on: January 10, 2017, 07:38:15 AM »

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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"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 #24 on: January 10, 2017, 05:03:52 PM »

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;
Logged

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!
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