Friday, August 30, 2013

The saga of my pancreas..feet..microbiome ..blood.. liver - part 1

Well, this just keeps going - on and on and on.  I thought I would be able to write a post when it was all done.  But clearly not.  So below is part 1 of an ongoing tale about me - my microbiome - my pancreas - my feet - my liver - my blood - and more.

Medical Record from my being admitted to
the hospital in 1984.
This particular saga started - I guess - in 1984.  That was when, at 15 years old, I came pretty close to dying before being diagnosed with type I diabetes.

My immune system had betrayed me by killing the beta cells in my pancreas. Thanks a lot immune system. Anyway - this is not supposed to be a post about diabetes. So - flash forward to a few weeks ago. Diabetes for almost 30 years and no major complications to note. Many annoyances. Some minor complications. But overall, I am doing OK.  Obsessive checking of my blood sugar and trying to keep my sugar in control and trying to regularly exercise seems to have kept the diabetes gods appeased. Eyes generally always have looked good. Feet HAD always checked out. Kidneys always seemed good.  Knock on wood - all was as good as I could hope for.

But then ... something came up.  A month and a half or so ago I kept noticing this funny feeling on the bottom of my right foot. Near the toes. Exactly the same kind of feeling one gets when one has a bandaid or tape stuck to my foot (which, given I have two kids both of whom put bandaids on every minor scratch and then leave them lying all over the house and our pool deck - is not too rare).  I thought - maybe the feeling will go away. But it didn't. It was lurking there. And after a week or so I decided I should get my doctor to check it out. So I put in an electronic request for an appointment on 7/21:


Appointment request.

I love this MySutterOnline system. After a few messages back and forth I set up an appointment for 7/31. Seemed reasonable. Nothing here seemed urgent.

Appointment info.

I did not want to see another doctor since, well, my doctor is awesome.  Best doctor I have ever had.

And on 7/31 I headed on in.  First I saw my doc's assistant.  She asked a lot of questions as always.  I tried to explain the feeling on my foot.  Not numb.  Not pain.  Just weird.  Like something was stuck there.  She did not quite get it.  Kept asking about whether it felt numb or not.  But eventually the doctor came in.  And he asked some questions with his assistant there and explained to her that what I was experiencing is actually a pretty common thing in diabetics - not pain - not numb - just weird.

So - on to the foot exam.  He did a series of tests of my feet - circulation - feeling - and more.  And all looked good.  No detectible issues.  Except one thing.  Dermatophytes.  Veritable bucketloads of them. One my toenails.  And in the cracks between toes.  And right at the spot where I was feeling the weird feeling.  Oh - I should explain.  Dermatophytes are a kind of fungus.  On one's feet they are generally referred to as "Athlete's Foot."

Athlete's Foot fungus.
And my doctor explained - I have a decent case of this Athlete's Foot.  And the weird feeling I was having could be caused by these fungi rather than the thing I feared - diabetic neuropathy.  So he said - he recommended that we first try and treat the fungal infection and hopefully the weird feeling in my foot would go away.  And getting rid of the dermatophytes would probably be a good things anyway.

So - how to get rid of them?  Oral antifungals was what he recommended.  A long long dose - three months or so.  With one issue - the antifungals could damage my liver.  And thus it was a good idea to screen my liver before, during and after the treatment.  So he ordered a liver panel test and also sent off a prescription for the antifungal terbinafine.  So - I left the office and decided - this was not so bad.  If my foot issue was caused by the fungi then perhaps it could be eliminated.  But of course I was worried about the effects on my liver.  And I was also wondering - what happens to my microbiome (the fungi and the others) when one takes antifungal drugs.  So in the medical office parking lot I googled around looking for information on microbiome studies after antifungals.  And I could not find too much.  So I decided perhaps some microbiome researchers might want to study me while I went through the treatment.

So - I text messaged Rob Knight - the guru of all things related to the human microbiome and one of the key people behind the American Gut project.  And I asked:

Text messages with Rob Knight
And eventually he told me that there were some studied going on but unlikely to be able to enroll in them.  He then suggested perhaps I could sign up for the American Gut Project and collect some samples via them.  And so - after I series of emails I volunteered to sample my self.  All seemed good.

Finally got around to getting the blood drawn 8/8.

Yes, I had my blood drawn.

And when I got back from the lab I found a nice surprise waiting for me.  

Package from the American Gut project.
And I decided to post a bit about the whole saga.  I posted to FB rather than my blog for many reasons.  I did not yet feel comfortable making all of this fully public but I wanted friends and family to know.  And secretly I was hoping that one person who I knew - who was a family friend - who I knew read my FB posts - and who was a MD working on antimicrobial compounds - might see the post and offer some advice.  I did not want to ask directly I guess so this was a way of trying to get some input without asking.
Lemons to lemonade for summer 2013. 
Well, without making this a TMI post, let's just say I am having some foot problems that I hope are NOT due to a serious type I diabetes complication (~30 years of type I and no known major complications - lots of minor annoyances but nothing major). So I am hoping that my issues are caused by athlete's foot. And to try and deal with that I will be most likely be starting on a long term antifungal treatment next week. There are risks of side effects - such as liver damage - so I am getting some blood tests done first and will be monitored during the three months I will be on the AF.

So where you may ask is the lemonade? While on the way home from the doctor's last week after deciding to do the AF treatment I volunteered to be considered to be a subject for a microbiome study of the effects of AFs on the microbiome. Still have to do some paperwork for that, go through informed consent, and such. But hopefully I will have my microbiome studied for the first time and with a real potential use other than microbiome gazing. Stay tuned for more details. Going to be documenting the whole thing.




So - I was going to finally study my own microbiome.  And I could do it with a cool project - the American Gut Project.  Seemed like a good thing.  And it is ... but one minor complication.  I wanted to not yet start sampling myself until after getting the liver test done.  Seemed like a formality.  Except of course ... it wasn't.

On 8/11 or 12 I got a message saying the test results were back.  I was busy and did not check until on 8/13. I logged in to see what they were.  Lipid profile looked OK (well, LDL cholesterol was a little high but not much).  But the liver panel was disconcerting:

Liver Panel #1
Uggh.  I have had many liver panels done over the years.  And none showed any abnormalities.  Until now.  So - I spent the whole night googling and learning about what elevated ALT and AST could mean and what could have caused that.  And was mostly freaking myself out.  But I realized this meant I should probably not start on the antifungal drugs.  Which was probably good since 8/14 I headed out with my family on a camping trip.

Just before heading out I sent a message to my doctor.

Messaging my Doc.

And I tried to ignore the liver thing.  But I admit that the few times I turned on my phone I used it to google about ALT and AST.  And also so a message back from my doc's office.

Message back.
And when I returned from the camping trip I scheduled a follow up appointment with my doc and before the appointment he had me do some additional tests - based in part on email discussions between us.  One test was for hepatitis - which could have caused the elevated liver enzymes.  And the other test was to redo the liver panel.

Yes .. had blood taken.

Outside of Sutter labs.

I had the tests done just before my appointment so we did not have results yet when I met him.  And at that appointment he also ordered an ultrasound test.  I scheduled that for 8/26 and went on in.

Waiting for the ultrasound.
I never had had an ultrasound done before.  It was weird in that it reminded me of all the ultrasounds my wife went through for pregnancies.  And I got that goo all over me and my clothing.  The technician was nice but would not give me any information on what she was seeing.  But she seemed so upbeat that all must be good right?

Then I got a bit of good news.  The hepatitis tests were all negative.  And strangely and nicely - the ALT and AST in the re-test were now in the normal range.

Liver Panel #2

Hmm.  Weird.  What did that mean?  Was it a bad test?  Or were my enzymes spiked temporarily?  So I spent a lot of time googling and looking around to try to understand the meaning of temporary increases in ALT and AST.  Not really helpful since I still did not know if the elevated levels were real or an error.  But I guess it was good news that the second test seemed normal and that the hepatitis tests were all negative.

But alas, the good news would not last. On 8/27 I got the following results: (with the text and the screen shot ...)
Ultrasound results

PROCEDURE: US ABDOMEN COMPLETE, 8/26/2013 1:02 PM

COMPARISON: None

CLINICAL INDICATION: Elevated liver enzymes. 

TECHNIQUE: Transverse and sagittal transabdominal sonograms of the upper abdomen, aorta and IVC were performed in conjunction with color Doppler.

COMPARISON: None 

FINDINGS

Liver measures 134 mm in vertical dimension. There is a 19 x 18 x 21 mm hyperechoic focus in the right lobe of the liver. No intrahepatic biliary tree dilatation. CBD measures 2 mm in diameter. Gallbladder is unremarkable. No gallstone. No pericholecystic fluid. No ultrasonographic Murphy sign. Hepatopedal portal venous flow.

Spleen measures 118 mm. No focal splenic lesion.

Midline structures including pancreas, IVC and abdominal aorta
are not well seen and grossly are unremarkable.

Right kidney measures 111 mm and left kidney measures 122 mm. No definite echogenic stone. No hydronephrosis. No definite focal renal lesion seen.

No ascites. 

IMPRESSION:
1. No gallstone. No biliary tree dilatation.
2. Hyperechoic lesion in the right lobe of the liver as discussed. Further workup with contrast-enhanced CT or MRI may be considered further characterization is of clinical interest.
3. No renal stone. No hydronephrosis.
4. No ascites.

Now I have never looked at ultrasound results before.  But certainly one thing in there caught my eye ---  "There is a 19 x 18 x 21 mm hyperechoic focus in the right lobe of the liver."

Well that did not sound good.  And googling did not make me feel any better.  And so ...  Liver enzymes might be off. Or might have been off.  And I have a focus / lesion on my liver.  Fuck.

Today I talked to my doc and emailed with and talked to few others.  And the plan now is for an MRI or CT scan to look at the focus / lesion more carefully.  Could be nothing.  Could be something but mostly harmless.  Could suck.

So - this PM I had to go in for another blood test to check my kidneys to make sure they can handle the "contrast" dye to be used.  I await the results and tomorrow will be scheduling the imaging ...

Another blood draw.

Sutter Lab
And STILL I have not sampled my microbiome.  But in emails with the folks from American Gut we decided that getting a good baseline of "before" before I go on any antifungal would be a good thing.  So I am going to start sampling, maybe tomorrow.

Oh - and I forgot to mention the parallel track here. Just after I made the Facebook post discussed above I did indeed get contacted by the family friend MD who had amazingly useful things to say and to do about the fungal infection.  But more on that later.  Probably soon.  I am not having an easy time sleeping.  So I write ...


UPDATE 9/11/2013

Well, I had my liver MRI today.  It was pretty freaky - have never had an MRI before.  First, I had to fast for four hours, which was OK.  As a diabetic, I frequently don't eat for long periods of time if my blood sugar is too high.  And then I went in to the Sutter Clinic in Davis.  I had pondered taking some sort of anti-anxiety medication or sedative as I can get claustrophobic but when I called the clinic they suggested I wait to do that until I talk to the MRI people because they might not recommend it.  Big mistake.  But I will get to that.

So I drove over to the clinic for my 11:40 AM appointment and parked and took a few pics on the way in.

Parking area at Sutter Davis


I had to fill out a collection of forms about medical background and whether I had any metal inside of me:

Forms

I asked again about the antianxiety meds at the front desk and they again said to wait until talking to the people doing the MRI.  As I pondered just taking something (I brought some lorazapam) anyway, I was called into the back within a minute or so.  Maybe I was out of order for the better:

Not everyone in order ...

In the back they told me I could put on a gown and some very posh medical shorts in a little changing area and I could lock up all my stuff in a drawer in there.

In the MRI changing room

The MRI lockbox

And then I asked about the antianxiety meds and they said something like "well, you should have done that a while ago since they take thirty minutes to kick in and we are ready to go". Hmm.  Then they told me that I would not be going completely into the machine - my arms would stick out.  And my head would be near the opening.  So it sounded OK.  So I lay on the table and they put in an IV (for the contrast dye) and they got me nice and comfy with all sorts of pillows.  And they gave me earplugs.  And then they slid me into the machine.  Something like what is in this picture (I did not take any pics in the machine ...)

From http://www.hfmhealth.org/?id=2255&sid=1

but with my arms over my head and my head a bit further into the machine.  In one hand I had a little squeeze ball to use if I needed to come out or needed their attention.  I seemed fine and then made a big mistake.  I opened my eyes.  And I could see nothing but the inside of the tube.  I felt trapped.  I shut my eyes again.  I tried to think of something else.  Baseball.  Movies.  Homeland (I had watched an episode from Season 2 the night before).  Anything.  But all I could think about was how close the tunnel walls were.  So - I squeezed the ball.  It took a few seconds for them to start to get me out - which felt like an eternity.  And I said - I don't think I can do it.  And they said, well it may not be possible to do it today since it would take a while for the drugs to kick in if I took them.  And so they tried putting me in again and I lasted seconds.  Back out.  Fuck.  I needed to get this done.  So I asked - what if I took the lorazapam and maybe they could fit me in if the schedule was light?  And kindly they said they would look into rearranging the schedule - and a few minutes later they came back and said that as long as I had someone who could pick me up afterwards, they should be able to "squeeze me in" (their words) in their schedule after 30 or so minutes (so the meds could kick in).

So I took the lorazapam, and then spent thirty minutes in a side waiting room reading Sports Illustrated and trying to relax.  Actually, the 30 minutes of relaxation was possibly as useful as the drugs.  And then we started over.  Reconnected the IV.  Set me up on the ned.  And rolled me into the machine.  And I kept my eyes shut.  I thought nice thoughts.  And I made it.  An hour or so in the machine.  Breathing in and out.  Holding breath.  Over and over.  The technician was completely awesome - perfect soothing voice and soothing style.  Always telling me what was going on and how long each image run would take and asking how I was doing.  And then, as my arms started to get sore (they were awkwardly positioned over my head) it was over.  Phew.

Except, not phew.  Now I had to worry about the results.  I went home.  I worried.  I faded in and out (the lorazapam really did have some effect).  I napped.  My kids came home.  We hung out (though I was asleep through much of it).  And life went on.

UPDATE on 9/13/2013

Thursday I spent most of the day working on a grant proposal and waiting for a phone call from my MDs.  It never came.  I called the imaging center, sniffing around to see if I could get the results sent directly to me.  Nope.  I emailed my primary care doc's office ... and wrote

Email to my docs

I then puttered around and hoped for a return message.  Nothing that day.  Uggh.  So I spent Thursday night a bit stressed, shall we say.



Friday 9/13/2013

Tried to relax.  Biked with my kids to their school.  

Biking to school w/ kids & wife

Came back to the house.  Was going to call my doctor.  And then I got an alert saying I had a message from the health care team online.  So I logged in and found this:



1st message back

Not what I was looking for.  So I puttered around the house some more.  Pondered how to hack into the MRI database and download my results.  Decided that was a bad idea (for now).  And then I got another message a few minutes ago saying I had a notification online.  So I went and logged in again and got this:


The good news

Well.  WHEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE.  Certainly is good news.  Apparently. the MRI showed nothing wrong with my liver.  Not sure what was going on.  But boy this was much better news than I expected.  I figured I had some sort of problem at the least.  Maybe I still do.  But at least nothing apparently showed up in the MRI.  And now I can get back to what began this whole saga.  My feet.  Stay tuned.  Going to start some microbiome sampling today for the "before."



UPDATE Sept. 17, 2013

Well, I suppose it was a bit premature to be perfectly content with the message from my doctor ...  I wrote to my doctor's office asking how I go about getting a copy of the actual MRI scan so I would look at it myself and share it with some other medical professionals (and possibly even post it here).

Asking for the MRI scan

I still have not gotten the scan, but they did post the official MRI report from the radiologist.  Not quite as clean as I had imagined ...

The full results



The key part is here:

The key parts

So - apparently  - the ultrasound was actually spot on.  I have multiple foci that "show characteristics of benign hepatic hemangioma".  And they certainly aren't tiny.  Now if these really are benign that is fine.  But now I am obliged to start digging around to see how often things that seem to be benign hepatic hemangiomas end up being something else ... Uggh ... it continues ...


22 comments:

  1. good luck!hope everything works out well.have t1d myself and take part in the ubiome thing, so always interested in what you have to say.cheers from germany.
    till

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  2. Thank you so much for sharing your "saga" here. I am currently going through some medical complications after an ANS Test my doctor ran at my last check up came up with some peculiar results. Hang in there, and I look forward to following the rest of this post as it develops! xoxo

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  3. Sorry to hear about all that.
    Hope you are going to feel better soon!

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  4. If I were you, I would be doing everything I could to nutritionally support your liver while this is going on. Not an expert(yet) though. Good Luck, Skill, etc.

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  5. FWIW (and I'm no doctor) my understanding is that imaging of the liver past a certain age will almost always show 'abnormal' features that could be serious, but may mean nothing; not worth stressing out over 'til a doc truly pinpoints something concerning.
    We've become a nation of medical testing & number addicts -- give anyone over a 45 a large enough battery of medical tests and most will panic over some of the numbers that result... my doc stopped routinely using the PSA years ago because of its unreliability, and I suspect that will be the case for a lot of the testing we use today, where precision & reliability (and even validity) are lacking.
    Anyway, good luck...

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  6. The Google link you provide for 'hyperechoic lesion' looks quite reassuring to me. It says that by far the most common cause is a benign hepatic haemangioma, and the link from this says that most of these are incidental findings on ultrasounds, and they are usually asymptomatic.

    So here's hoping your worries turn out to be unfounded.

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    1. Thanks - I know that the most common things are not so bad (error, hemangioma) ... but if you look at papers on the %ages the fraction that are bad things is not so low ...

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  7. I miss mySutterOnline. Here if you have tests done you only get notified if there is a problem. I liked being able to see all results negative/positive, etc.

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  8. I appreciate your sharing this journey, Jon. It was similar to mine in some ways, and I read parts of this with great worry, and then great relief at the end.

    Last year, I had some kind of horrific cervical vertebrae problem---my arms and fingers went numb from time to time (wrong side for cardiac issues) with significant shoulder and neck pain. Heck, I couldn't type for several months.

    And I had lots and lots of waiting while the doctors sorted things out. First ultrasound, then MRI. And I am pretty claustrophobic, but I don't have anti-anxiety meds. But it worked out fine for me! I was frankly surprised. When I opened my eyes during the procedure, all I saw was the surface of the white tube, a couple of inches away---just as you describe. And since, ahem, I am not small, this had all kinds of psychological impacts. Yet I didn't get super nervous. I too had to hold an arm at a funny angle for an hour. The earphones were worthless, but I noticed that the banging magnets sounded JUST like the intro to the Beatles' "Helter Skelter," and that helped me.

    Sure enough, I have a blown disk. Neurologist recommended surgery. Scary reading. I made appointment with neurosurgeon for consult. ALL of these things took time. Meanwhile, my symptoms abated.

    Neurosurgeon met with me, did tests. Second MRI. Neurosurgeon said "I think you are resolved. No need for surgery." I pointed out that my GP and my neurologist were pretty adamant I would need to have disk repair. He laughed. He went over the tests with me.

    So far, so good. I sincerely BOTH you and I have a calm sail through these kinds of medical waters. Thanks for your update and best wishes to you and your lovely family.

    -MM

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    1. I've found that a large spoonful of cough syrup (the DM kind) taken half an hour before an MRI is very effective; I almost doze off to the headbanger noise.

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  9. yikes! Hang in there. You might want to keep in mind that certain bacterial infections can cause the feeling you described.

    The microbiome study may pick them up if you took a sample from the numb area on your feet.

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  10. Great share.
    Yes, adult liver is very different from young rodent stuff you see in labs - virtually impossible (wearing my biochemist hat) to homogenise, for example. So ultrasound will pick up many signals that are close to uninterpretable, but these need to be double checked. This also illustrates two other issues. The first you pick up on - searching on a single term, like "'hyperechoic lesion" drills down to the worst outcomes pretty fast, whereas your great doctor looks at the whole (a true systems biologist), but obviously want to make quite sure. The second, almost a corollary, is that a little knowledge can be quite frightening.

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  11. Great news.

    Love this on a lot of levels:

    1st) No liver problem for Jonathan! Yay!!! (way first and foremost)

    but also:

    2nd (3rd and 4th) You posting so openly about anxiety and how it affects us in a healthcare setting. What a gift you give in describing the anxiety of pre-diagnosis, the anxiety of the procedure in a confined space, and the anxiety of waiting for the results. It's not great for ANYONE, but especially hard for someone with anxiety disorder (whether it's general anxiety, claustrophobia, or any other manifestations of anxiety).

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  12. You have been a bit of a victim of modern medicine.
    Tinea affecting the skin on your feet can be treated by keeping the feet dry or if this fails by a cream which as a local treatment is much less likely to affect your microbiome. Tinea affecting nails is essentially a cosmetic problem but if it bothers you it can be treated with an antifungal laquer. It is best to avoid long courses of potentially toxic drugs it at all possible. You may have diabetic neuropathy but the other common cause of your symptoms is vitamin B12 deficiency - much more likely if you are a vegetarian or vegan. Is your B12 ok ? - keep us posted.

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    1. Well - the issue is not (at least from what I can tell) - cosmetic. As far as I can tell it seems like fungal infections for a type 1 diabetic, with a potential foot problem, are something to try and get rid of. And most of the papers and people I have consulted suggest that the topical antifungals just don't really work. So that is why - after many discussions - we decided to go with the oral AF. But I agree with you that it is best to avoid long courses of such drugs and already discussed with another MD the notion that I would not take the AF for a long time. As for B12 - not sure --- but am not vegan or vegetarian (though for a while I was vegetarian ...)

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  14. Thanks for sharing your story, Jonathan. And you were brave to be in an MRI for that long!

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    1. I felt like such a wimp for begging to get out the first time ...

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  15. Well, GRRRR ... see latest update on 9/17 ... not exactly fine in the full report

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  16. Gudluck! Hope the foci you described are just benign, and everything works out well for you.

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  17. Jonathan, did you end up submitting before and after samples to the American Gut project?

    I commenced terbinafine therapy a few weeks ago to temper the damn dermatophytes in my toenails. I have noticed that my GI tract has been unsettled while on the meds so I took a weekend off and it returned to normal. Then after resumption became unsettled again.

    I am intrigued to find out what effect the terbinafine has on my microbiota. Isn't it true that the vast majority of our microbiota is bacterial, with minor parts of fungi and archaea. My gut may have a higher incidence of fungi (candida) due to my enjoyment of beer.

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  18. Jonathan, did you end up submitting before and after samples to the American Gut project?

    I commenced terbinafine therapy a few weeks ago to temper the damn dermatophytes in my toenails. I have noticed that my GI tract has been unsettled while on the meds so I took a weekend off and it returned to normal. Then after resumption became unsettled again.

    I am intrigued to find out what effect the terbinafine has on my microbiota. Isn't it true that the vast majority of our microbiota is bacterial, with minor parts of fungi and archaea. My gut may have a higher incidence of fungi (candida) due to my enjoyment of beer.

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