From a Patient’s Perspective: The Ureteral Stent: Friend or Foe?

Even though different people respond to stents in different ways, I suspect anyone who’s ever lived with a ureteral stent remembers the experience.  I have had two, and both were, indeed, memorable.

Prior to undergoing a pyeloplasty, (a surgical procedure to correct a urinary tract obstruction) I was informed that a stent would be in place for about seven weeks.   I also recall being told, or perhaps reading, that such stents cause “discomfort” in some patients.  In my mind the term “discomfort” equates to nothing more than an annoyance or a nuisance, so going into the surgery I was not overly concerned.  For the first couple of days following surgery, perhaps because of post-surgical pain killers, it seemed the stent would be absolutely no problem.  I could hardly feel it.  “This will be a piece of cake,” I thought.

Then, shortly after going home, I became increasingly aware that some apparently sharp object was attempting to drill a hole through the wall of my bladder.  In fact, the image of a shish-kabob skewer came to mind.  At the same time, there was the sensation that something was tugging on my right kidney, trying to pull it down from its usual location.  It was difficult to find comfortable positions…and it felt as though gravity was becoming my worst enemy.  Urination was frequent and painful, and my urine continued to be bloody for the entire seven weeks.  Involuntary tears came to my eyes and waves of nausea were common.  Finally, I discovered that sitting in a recliner and tipping it back approximately half way seemed to relieve the worst of the pain, and that allowed me to get a little sleep at night.

After seven long weeks, I welcomed the removal of that first stent.  A generous application of lidocaine made the procedure entirely tolerable, and I watched on the monitor as the stent was grabbed and the upper curly-cue began its descent down through the ureter.  Once I was free of the stent, the relief I felt far surpassed the minor discomfort associated with its removal.

About a month later, I accepted a second stent with guarded optimism.  This one was placed following lithotripsy for a 1+ cm stone in my left kidney.  It seemed logical to me, since this ureter was not compromised or swollen, that this stent should not hurt nearly as much as the first.  Unfortunately, I was wrong about that. Once again, the same familiar painful and distressing physical sensations returned.  And once again I sought relief in the recliner.   The stent allowed stone fragments to pass, but I was elated to be rid of it after only three weeks.

The second stent experience left me with a new determination to do everything I could to prevent future stone formation.  If making a few adjustments, such as drinking much more water each day, can prevent new stones and another stent placement sometime down the road, then I was ready to change old habits.   Accepting the inevitability of new stones, then treating them as they become problematic, is no longer acceptable.  My new plan is to be well-informed and pro-active and do all I can to discourage new stone formation.  In fact, it’s the vivid memory of previous painful stents that continues to be the most powerful motivator.  In a way, then, those stents are still serving a most valuable purpose, and I should remain grateful for them.

Editors note: Bonnie writes about her experiences as a stone patient in her posts. If you have experiences as a patient you would like to share, feel free to add a comment or send her an email at: ask@kidneystoners.org

 

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186 Responses to From a Patient’s Perspective: The Ureteral Stent: Friend or Foe?

  1. Liza says:

    Ok so I don’t totally belong on this site– I’ve never had a stone In my life, my ureteral obstruction is from cancer. But as I lay in bed trying to distract myself from my stent-induced misery, I came across this posting, the title of which is exactly what I’ve been wondering. As background, I’m 43, a doctor (a nephrologist, ironically enough), and have not let my cancer or its treatment interfere with my active life including parenting my 2 young kids. But this stent has left me mainly bed-ridden since I’ve gotten it (admittedly only 2 days ago, so things will hopefully improve). The pain for the first 18 hrs was the most severe I’ve ever had in my life. The urologists office was useless, with nothing to offer except repeating the advice to take Tylenol and the belated warning that this may last a few days to a few weeks. So I ended up researching it myself and got a friend to prescribe flomax and Detrol (and vicodin). Today I no longer need the Vicodin, but the detrol has left me with dry mouth and a clouded brain. And if I get out of bed, I have an overwhelming bladder pressure that makes me feel like I’m about to pee in my pjs. So here I am, only mildly uncomfortable but stuck in bed and barely functional, certainly not living my life or parenting the way I want to.
    Which brings me back to the title of this post. What I have come to, after my own experience and reading about others’ is that this approach to managing ureteral obstruction is primitive and ridiculous. Is a-few-sizes-fit-all stent really supposed to work for people of all shapes and sizes– really??? The variety of experiences that people have post-stent speaks, I believe, to the relative appropriateness of the stent for that individual. And given my own and others’ experiences with urologists not thinking about the patient experience (not warning about pain appropriately and not managing it appropriately), it makes me wonder how much thought the urologist is giving to matching the stent with the individual patient.
    My options going forward are to continue to get a new stent every few months, or to let the tumor obstruct my ureter and shut down that kidney. As a nephrologist, I can’t believe I would even consider giving up a kidney without a fight. But if my next few weeks continue like the last 2 days, I may choose that route. It’s not the fight I’m afraid of, it’s the days spent lying in bed unable to live my life on my terms. As a cancer patient my terms have taken some new definitions, but they are not so elastic to include this.
    In closing, I will just say that, with all the smart people with amazing ideas in the world, it’s unfortunate that those of us who require a tool to keep our ureters open are left with such a terrible one. Can’t some smart person come up with something better?

  2. Chaze says:

    I am 21 years old, extremely active, weighing in at 150 pounds, and standing at 6’0″. About a week ago, bright and early in the morning, I doubled over with the worst pain I’ve ever experienced. Rushing to the ER, I did something I had never done before: begged for help. I’ve broken vertebrae, fingers, toes, torn tendons and muscles, and even had an infection that solidified my joints temporarily… hell I’ve even been stabbed. But nothing has ever hurt like this kidney stone.

    After four days of narcotics, moaning, and groaning… I demanded another checkup. Turns out the stone had lodged itself nice and tight. I went under the next day, having lithotripsy conducted and receiving a stint. Immediately after my discharge that day, I went shopping at the grocery, cleaned my room, and taped a water bottle to my hand (figuratively).

    My pain had completely subsided. I’ve completely stopped taking pain pills, waned of chewing tobacco, and have increased my water intake by nearly 400%. I do have a bit of discomfort, as I can actually feel the stent within me. I void (pee) about once an hour; at times a bloody and uncomfortable battle. But other than that I’m maintaining quite well.

    Every individual reacts to stints differently. For some it’s a personal hell, for others it’s a mere nuisance. I do smoke weed very often, and that has helped with pain, discomfort, and negativity. I’m not ashamed of this, and don’t condemn me with nonsense as it has clearly not affected me negatively (I can iterate better than many posters present). I only brought this up for those looking for a last-ditch effort to subside their pain.

    I will be having a follow up in a week, and hopefully will be returning to normal. I hope everyone out there going through this can keep their heads up. Remember, there is an end to this.

    • shane says:

      I’ve currently got a stent. The pain was fine for the first week but it has gradually gone down hill since. Now it hurts to walk. I can’t sleep well at night. I’m constantly running to the toilet. Still have another 9 days till the stent is removed.

  3. Chaze says:

    I am 21 years old, extremely active, weighing in at 150 pounds, and standing at 6’0″. About a week ago, bright and early in the morning, I doubled over with the worst pain I’ve ever experienced. Rushing to the ER, I did something I had never done before: begged for help. I’ve broken vertebrae, fingers, toes, torn tendons and muscles, and even had an infection that solidified my joints temporarily… hell I’ve even been stabbed. But nothing has ever hurt like this kidney stone.

    After four days of narcotics, moaning, and groaning… I demanded another checkup. Turns out the stone had lodged itself nice and tight. I went under the next day, having lithotripsy conducted and receiving a stint. Immediately after my discharge that day, I went shopping at the grocery, cleaned my room, and taped a water bottle to my hand (figuratively).

    My pain had completely subsided. I’ve completely stopped taking pain pills, waned of chewing tobacco, and have increased my water intake by nearly 400%. I do have a bit of discomfort, as I can actually feel the stent within me. I void (pee) about once an hour; at times a bloody and uncomfortable battle. But other than that I’m maintaining quite well.

    Every individual reacts to stints differently. For some it’s a personal hell, for others it’s a mere nuisance. I do smoke weed very often, and that has helped with pain, discomfort, and negativity. I’m not ashamed of this, and don’t condemn me with nonsense as it has clearly not affected me negatively (I can iterate better than many posters present). I only brought this up for those looking for a last-ditch effort to subside their pain.

    I will be having a follow up in a week, and hopefully will be returning to normal. I hope everyone out there going through this can keep their heads up. Remember, there is an end to this.

  4. misty says:

    I am currently pregnant and had to get a stent placed back in January 2015. I have serval replacements done since. I am relived to know I am not alone. It is very painful and I also had blood in my urine.

  5. debbie says:

    I am having my stent out on Monday. I have been off work all week so I thought I would try and go in today. I lasted about 30 minutes at the most. I really thought this stent wouldn’t be that big of a deal, but boy was I wrong. I can’t sit in a normal chair. It has to be a recliner or just lay in bed. The bladder spasms are so nauseating and painful. I have only had mine in for a week and that’s plenty long for me! I really feel for you people who have had to have one in for months. I just can’t imagine! How do you work?! I too have had blood in my urine this whole time plus a constant achiness. I just want it done and over with. I’ve been fighting this stone for about 3 weeks now. It got better and I thought it had passed, then it got really really bad and I ended up in the ER. I just want to figure out what I need to do to keep these from reoccurring. Good luck to all of you!

  6. kathy says:

    Thank you for these comments. It has been a comfort and also made me laugh. This is my 2nd stuck kidney stent. Dr does not listen that this hurts and burns and I just cant wait for it all to be out. I find that I really cannot work because I am so uncomfortable and having to run to the bathroom all the time (not to say anything of the alternating constipation and diaharrea from the meds) . Frustrating with the Dr and work.

  7. manadrain says:

    Back in mid January 2015 I had abdominal surgery because they found a mass pressing against my kidney/ureter. To make a long story short they found a benign tumor. However me ureter was getting blocked because of this and my urologist had to put a stent in me during the surgery. I had to have a second abdominal surgery because my wound opened up near the end of January. However this stent did not solve the problem and in early February I had to go back into the hospital to have this stent removed and a larger stent put in. This time I had the stent in me for about 6 or 7 weeks. The first day after the procedure I would have very painful urination and a fair amount of blood. This lasted for about two days. I found if I would drink lots of water it would help. Things were good for a few weeks and then I would start to have pain again when urinating. I would get burning sensations and it would be red colored. This went on and at times I would have trouble sleeping. I got the stent removed in near the end of march. I chose to get this one done in the office. Just let me say I will never do that again. Worst experience ever. I would say on a pain scale I would give it a 7 or 8 and on a discomfort scale I would give it a 10+. The first day after it was removed I had the normal symptoms that I expected. Very painful urination and blood. I flooded myself with water to try and force this out and the second day was good. However on the third day I had some pain and found that I would run to the bathroom. I could not make it most of the time and as soon as I would stand up I would just start to urinate. I stated to run a fever and ended up almost sleeping for two days. After that everything was fine. I had to get a ultrasound to check my kidney two weeks ago and it still showed it was blocked. My urologist had me get another test done…I believe it was a Renal Scan and I just got a call yesterday saying that the test is still showing it is blocked so the only real option is to put another stent in me. It is very frustrating because I don’t want to do this again. However I don’t have much choice so in the near future it is back to the OR to have another stent put in me and have to deal with this for the third time.

  8. Diane says:

    Hi I only have one kidney as my right one was removed 5 years ago as a giant stag horn kidney stone had stopped it from working. I have felt fit and well until I got a bad kidney infection a month ago another stone 13mm was causing a blockage in my remaining kidney which had caused urine to be trapped in my kidney and was full of infection. So I was rushed in to hospital as an emergency I can only praise the surgeon for his brilliant work. I was awake in theatre after having a local anesthetic he described what he was doing and I could see the stent being positioned on a screen I saw the built up urine and infection being flushed away. All the time I felt no pain after the stent was in place I felt the odd twinge but nothing major I didn’t take pain relief which was offered as I was in no pain. I was sent home after 2 days of being pumped with antibiotics I cant tell I have a stent I drink a few litres of water a day to keep it flushed I do have urgency to go to the toilet but no pain on urination. I have not seen any blood at all in my urine even when I fist came back from theatre. I am even going on holiday with the stent in place and that includes flying, for a week then when I get home I will be having the stone removed. I can only say what a brilliant surgeon I had and I have had no complications at all.

  9. lucas says:

    i recently suffered a blockage in ureter and have had a stent in and like you am experiencing the same discomfort,the pulling the stinging etc etc,but it has affected me in other ways i often feel sick with no appetite,the smallest job has become so tireing i just do not feel i can do my job as a landscaper until this stent has been removed,i also understand i have 6 more stones in my kidney and dread them moving,the one thing that i am suffering is something i have never had and that is depression im so use to being active and feel that even to walk to shop is a challenge,the last 2 nights ive felt so low i pretty much cried myself to sleep,i just need someone to tell me this will get better thank you

    • suzanne says:

      Lucas,
      I have finally found someone who is feeling the way I am. I have so much pain and pressure .I am tired ALL the time!. It makes it nearly impossible to do my job and I too have cried many times at bedtime and even during the day….. Unfortunately for me my stents may have to be permanent. I don’t know what I will do…….

      • Eileen says:

        I have two stents in that are replaced about every seven month
        I do no bleed I live with the discomfort. I do run to the bathroom every couple of hours It’s not pleasant but what are my choices. None! Sometimes I feel no pain other time it’s very annoying. I do not put a limit of on what I can put up with
        As you can bear an awful lot if you have to

  10. Annie says:

    I have to say that some of these posts had me laughing out loud and just laughing is painful. This will be my second time around with a kidney stone. The first one was 5mm and came out on its own with a ton of pain meds and a medication that expands the urethra. ( I think that’s what the Dr said.) This one however was almost 10mm. How in the hell do they get so freaking big I want to know! Well I went into the ER last weekend in excruciating pain. It was almost as bad as giving birth. And I don’t take this lightly. They did a CT scan and found out how big and where it was located and found that it was blocking my Urethral tube causing fluids to back up. So into emergency I went. Well to make a long story short, the Doctor told me beforehand about putting in a stent but because there was zero time to read up on what exactly that meant I can tell you that it was quite a bigger deal than what he said would be pretty “easy” First off for most people it the most uncomfortable thing you can go through after surgery. It was like having cystitis every day. I couldn’t even sit normal because it felt like I had a tampon shoved in my pee hole. Bending over was almost impossible because when that happened it felt like needles being poked in my bladder. I had to pee every 30 minutes and along with the burning it felt like an elephant was sitting on my bladder because of the pressure. Don’t even get me started on the bladder spasms. Which causes me to almost pass out when one would come on. They put me on Norco for pain, pyridium to numb the bladder, antibiotics and a stool softener. Apparently constipation can make this even worse. I don’t think anything could make it as bad as it already is. Then the Doctor wants me to drink 3 yes 3 liters of water a day. Which means for me peeing all night long with little sleep. I guess I’m one of the sensitive people that they warned me had more difficulty with stents. Ya think?? After 2 days and nights of this, I called the Doctor to complain and he said the only thing he could do was to call me in a prescription for meds that take away the bladder spasms but can cause you to no be able to urinate at all which would then cause me to have to go back to the ER so they could put a catheter in. Excuse me? Why would I want to trade one horrifying thing for another that’s way worse. He also said that if he didn’t put a stent in, that my urethra would balloon up and cause me to lose the ability to urinate. So I had a talk with myself and agreed to just suck it up for 10 days until he could take this little monster out. I can’t wait for that one either. I had to be put to sleep to put it in and now he wants to take it out with a little numbing. I’m thinking to myself that he must be one sick psycho if he thinks he’s just gonna yank a foot long spaghetti tube out of my pee hole with nothing but a numbing agent?? Wth is wrong with these doctors? Are we just a bunch of guinea pigs that they can’t find an easier way to deal with Kidney stones that can’t pass on their own?? All I can say is I don’t care if I have to drink an entire lake to keep from having one of these things again. I’m doing it!

  11. jesse says:

    Hello fellow sufferers of the God awful extensive, unbelievable pain associated with kidney stones, but if thats not horrific enough to withstand, ahh the ancient method of stent placement, this is my second stent and i tell you all and thank you all because we are not alone, i thought the first time my face would be permananently stuck in petrified pain, there really is little to no relief from this thing..not to mention the anxiety that comes with it so you end up having more meds in your cabnet then your parents or grandparents..
    All i can say iswhen you find that temporary relief and i do mean temporary!.. Rejoice, and thank God for every little thing in your life, the blood yes pours everyday it may not seem normal but it actually is with this barbaric procedure..i have 3 weeks to go and i know not every moment will cause me suffering and i am reassured that like all else in life this too shall pass no pun intended i wish all of you my deepest sympathies as we go though this together..may God bless you and keep you, and for your sake force your life style to change and except what were going through we dont have much choice..and cry cry like a baby it feels better..all my love my distant friends heal fast!

  12. Helx says:

    Rushed into A&E in November with severe left abdominal, groin & flank pain & after xrays diagnosed with 2 stones. One blocking the tube & the other still in the kidney. After 3 days eventually had op to inserted stent & was home 2 days later awaiting whatever was supposed to happen next. The first week wasn’t to bad with some discomfort but after that things just got worse. I could feel the stent pulling & poking & trying to sit down comfortably became a military exercise.

    Finally got a clinic appointment for January. Christmas came & went with me spending most of it doubled up, looking in a worse state than my 76 year old dad. January arrived & after waiting 3hrs in clinic expecting some sort of treatment I got to see the consultant. They’d somehow forgotten to arrange treatment between November ’14 & January ’15 so, due to the amount of pain being experienced, it was decided to arrange an emergency procedure within to weeks to laser blast the stones.

    Now it got tricky! Due to previously being referred to a Cardiologist for investigations by the chest clinic I was contacted by the pre-Op nurse to inform me the Anaesthetist had declined to do the operation until such time that I’d seen the Cardiologist due to possible complications. This is ignoring the fact that I’d been ok under general anaesthetic during stent insertion a few weeks before & other recent procedures.

    So I received a cardio appointment for February. Which was cancelled a week before & moved to April. Even that has now been moved to May!

    None of the pills I’d been given hardly touched the pain. I’m almost housebound due to the pain walking & driving any distance is nign on impossible. So then the worst happened. In late January my father got admitted to hospital some distance from me and was eventually diagnosed with end stage cancer. Those 3 weeks were the longest of my life and so, thanks to that Anaethetist, when my Father passed away I couldn’t be at his bedside.

    So now after almost 4 months I’m still living with this stent & whatever stones are still stuck and burying my Father. Last week I was in so much pain I was admitted by A&E for the weekend for pain management & to make sure nothing was wrong with the stent. Being informed, basically, that because of the reasons the Anaesthetist declined the operation they can’t do anything unless it’s life threatening. Thankfully with copious drugs I made the funeral & so hopefully am due to see a Cardiologist in May, 6 months after insertion and with no immediate idea when I shall be relieved of stones or stent

  13. Zeli says:

    Had an operation October last year to remove 15mm stone. Inserted a stent in my right kidney. Since then i have had Blood, burning and pain on peeing. Some days are better than other but i just hate seeing blood in my urine. Always wonder why its there if the stone is out. I have tried drinking 3 litter of water a day but i am not sure if it works. Just cannot wait to have it removed.

    • Brigitte says:

      If your still having pain I would call your primary doctor and have him check and see if you have any kind of infection. Like you, I too had a stent placed January 14,2015 and let me tell you this, boy I thought childbirth was horrific but that is nothing compared to the pain of having stent placement. Then to make things worse my doctor tore my ureter with his camera while removing it. And pain meds are only a temporary fix to the excruciating pain you feel. After my surgery I was in excruciating pain for 5 weeks after! Only after getting a second opinion the doctor decided to test me for infection and sure enough I had developed a staph infection. After 10 days of antibiotics I was pain free. I finally get the dang stent removed on the 27th of this month(April). Now the only meds I’m on the oxybutinan for bladder spazzims and Motrin when needed but I really do think had my doctor found my infection sooner I would t have been in so much pain. And just thinking about my doctor telling me how it’s normal to feel burning when I urinate still makes me mad.

  14. Alison Newell says:

    Friend – as it saved my life. Foe as will become apparent. Rushed in with a staghorn kidney stone, went into renal failure and sepsis shock. Inserted a stent, but then I also went into respiratory distress. Stent stayed in for 6 months. Blood, burning and pain on peeing. Felt like I had permanent cystis and I had ongoing infections and on antibiotics for solid six months. Operated and removed my kidney stone through my back, 6.5 hours and lost 8 units of blood and hey ho they put in another stent as they only got 80% and needed to blast 20% left. This one is worse than the first stent as it has wires, feels like I’m being continually stabbed by a spike, which are the bladder spasms. My laser treatment has been cancelled due to staff and bed shortages, had this stent in for 6 weeks now and there’s blood, burning when peeing and incontience with this one. Can’t wait till they remove it. Been the worse 7 months of my life!

  15. Will says:

    Well. I had a 8mm stone laser on Feb 25. Left me with a stent on my left kidney. I was moving around better with the stone than I am now with this damn stent. Luckily I only have to keep it 5 days. But better diet and more water in my future due to this being the worst two weeks of my life!

  16. The country kid says:

    Hello all,

    A view from an Australian with kidney stones

    Kidney stones……….the most painful thing I have ever experienced….ever. My story started at 3:30am, I woke in immense pain thinking someone was trying to remove the lower left section of my back with a butter knife and out of 10 my pain was at 15 with no position able to give me any relief and trying not to vomit whilst praying to The Lord to take me know as I was ready to go and could not cope.

    I thought I would be tough as I have driven myself to hospital with a broken arm before but decided have my lady drive me to the hospital which is 45 minutes away as I did not want to disturb the ambulance drivers. What a mistake that was 45 minutes felt like 3 hours it took 3 nurses to get me out of the back seat and onto a hospital bed in the emergency bay. I was sweating profusely and screaming in pain and also left my lovely lady with vomit through the back seat of the car.

    Rushed into emergency and had 30mg of Trammadol IV,100mg of Morphine IV and 100mg of fentanyl IV over 30 minutes and still had a pain level of 9. I had a CT scan showing a 7mm stone blocking my ureter at the top. I was told the hospital could not perform the procedure required and was transferred to a private hospital in Brisbane via ambulance.

    I arrived at the private hospital and met by a urologist, he was fantastic!!!. He asked if I could have a shower as he would like to perform a procedure now by placing a stent in to allow the stone to be pushed up and out the way to allow the kidney to function correctly and relieve the pain. Even if I had to crawl across broken glass to get to the shower I would have done with a smile just to get the pain gone. I had a shower and down to OR.

    I woke up after the op and straight away I needed to go to toilet…….holy shit I thought they must of hit an artery as I have never seen so my blood coming out of me, and the pain!! I thought someone was trying to pull my kidney out through my bladder by using a piece of barb wire which was on fire. After 2 days in hospital with a lot of pain meds I was able to go home with the promise of laser procedure in 7 days.

    Having a stent feels like some has inserted a bent wire coat hanger inside of you and neglected to trim the sharp ends to say the least.

    The funny thing is that you are told to drink more and more fluids to help the kidney flush itself however trying to urinate every 25 minutes is to say the least is a knee buckling event and I personally tried not to drink anything as the pain was always waiting for me. After several days the pain stayed at a 5 and I made a decision to go back to work in my normal roll as a sales rep. That was also a mistake as I found myself concentrating on where the next toilet facility was whilst trying to deal with the constant irritation and pain not on my customers. Urinating was extremely painful and constant blood was always on display in the urinal, all that pain for such a small amount of urine. I started telling people that I was giving a blood donation to the urinal as there seemed to be very little urine there,I struggled for the 7 days until the laser procedure.

    I woke up from the laser procedure feeling the normal groggy way everyone does only to be met by the doctor, I have to say when the doc says to you ” it went ok but we had to use an expander to get the camera and laser in” you know you in trouble. I was told that they blasted the stone and I would pass a bloody slurry like substance over the next hour or so which wasn’t a problem however because they used an expander I would be in a lot of pain, I could deal with that part with the aid of pain meds. But I was also informed that I would require another stent in for 14 days as the risk of the tube collapsing was quite high due to the damage done with the expander.

    I have again struggled through the discomfort and irritation of the stent and I am due for removal this week. I can’t wait and if I could fit my hands up there or a pair of pliers I would gladly remove it my self

    I have to say that the stent must be the creation of some sick minded person and I strongly believe that all current and future urology doctors have one installed as part of there training so they can at emphasis with what we have to go through. I also must admit that I have enjoyed reading the other stories as some made me laugh and others made me feel for them.

    I will drink more water in the future as I never ever want this again!

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