Kidney stones can be the most horrible pain on earth!
I have had kidney stones for 15 years. I am a kidney stone master! I would like to share what I do to cope when I am passing a stone and also explain a little about why I have so many kidney stones. I have Medullary Sponge Kidney, also known as MSK or Cacchi-Ricci disease.
I had a migraine the night before, but no kidney stone pain, just really grumpy.
Different kinds of pain from a kidney stone
My kidney stone pain can in my back, right over my kidneys, on my side, low in the front near my groin.
It can be constant or intermittent, dull and achy or sharp enough to make it hurt to breath.
I can also get referred pain up my jaw behind my ear.
It can be constant or intermittent, dull and achy or sharp enough to make it hurt to breath.
I can also get referred pain up my jaw behind my ear.
Don't try to tough it out!
A stone can block your kidney from draining and cause permanent damage. If you seek medical help, the diagnostic tests will check the size of your kidney to make sure it is not blocked. While you are there, they can give you something to take away the pain!
Hydronephrosis-A stone blocking your kidney is a medical EMERGENCY!
Pain control during a stone episode.
Sometimes a heating pad is all I need. Usually I need something stronger. I used to go to the ER and they would give me an IV with morphine or some other really strong drug that just drugged me up into a fog. Then one time they gave me something that took away the pain but did not affect my alertness. I was thrilled. It is called Toradol and I ask for it everytime now.
Since I have hundreds of stones in each kidney, my urologist has me stocked with meds so I can treat myself at home for all but the worst pain.
I have Demoral, Dilauded, Toradol and Ativan that I take depending on the severity of the pain. Toradol is my favorite, but you can only use it 5 days.
I always take an ativan with the medicine. It calms me down and I am able to tolerate the pain better.
I use Fenergan for the nausea that the pain meds can cause. I am allergic to percocet and vicodan but they help some people.
Since I have hundreds of stones in each kidney, my urologist has me stocked with meds so I can treat myself at home for all but the worst pain.
I have Demoral, Dilauded, Toradol and Ativan that I take depending on the severity of the pain. Toradol is my favorite, but you can only use it 5 days.
I always take an ativan with the medicine. It calms me down and I am able to tolerate the pain better.
I use Fenergan for the nausea that the pain meds can cause. I am allergic to percocet and vicodan but they help some people.
This little thing?
You gotta be kiddin' me!
How can it be possible that the boulder that stopped you in your tracks with such severe pain ends up being almost too small to see?
Kidney Stone 6.09.05
stone enlarged
Lizard's giant kidne...
Surgery Waiting Room
Hospital Food
IMG_7406
Stone Scale
automatically generated by Flickr
YOUR TREATMENT TEAM
You are the TEAM LEADER
Develop a treatment team: A primary Doctor, A Urologist and a Nephrologist are a good start.
If needed you can add a Pain doctor and an Endocronologist. Your primary doctor keeps communication between your team flowing. A Urologist is for physical stone care and removal surgery. The Nephrologist is going to keep up with kidney function and stone formation prevention. If your doctors are reluctant to prescribe needed pain medications, you may need a Pain specialist. If your stones are caused by a metabolic imbalance you may need an Endocronologist.
If needed you can add a Pain doctor and an Endocronologist. Your primary doctor keeps communication between your team flowing. A Urologist is for physical stone care and removal surgery. The Nephrologist is going to keep up with kidney function and stone formation prevention. If your doctors are reluctant to prescribe needed pain medications, you may need a Pain specialist. If your stones are caused by a metabolic imbalance you may need an Endocronologist.
Have you had a kidney stone
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Try to catch your stone!
If you are able to catch your stone, it can be analyzed. Once the type of stone is identified, you can take steps to prevent further stone formation.
Some ways to prevent more stones.
Drinking 3 ounces of lemon juice from concentrate is supposed to help.Stop the soda! Any of the dark sodas and mountain dew are bad.
If I drink Iced tea I am almost guaranteed to end up in the ER within a few days. JUST SAY NO!
Spinach is high in Oxalate which is in many stones.
Too little calcium can make your body hoard the calcium it does have. That can cause more stones. Don't overdo the calcium but do not restrict it severely.
If you have gout, you may form uric acid stones. Treat your gout preventatively.
Medical Interventions
When you can't just wait it out.
When a stone is too big to pass on it's own, you may have to have it removed. One way is Lithotripsy:
Many times after lithotripsy a stent will be placed in your ureter to keep any stone fragments from blocking your kidney.
My experience with a stent ranged from uncomfortable to painful. Also my urine was full of blood until the stent was removed. This is normal.
Many times after lithotripsy a stent will be placed in your ureter to keep any stone fragments from blocking your kidney.
My experience with a stent ranged from uncomfortable to painful. Also my urine was full of blood until the stent was removed. This is normal.
My Urologist Holding a Cystoscope
Cystoscope is used by the urologist to see into the bladder. It has a camera, a tube for irrigation and a tool to grab things.
My urologist was about to use this to remove a stent 3 weeks after my last stone removal procedure. (I HATE GETTING THEM REMOVED!)
Dr. Perez, my urologist, gave me my stents to show my kids!
More kidney stones
Trevor Blake: Kidney stones. December 2007. Limited edition of eighteen. Vari...
curated content from Flickr
Helpful sites
- A Natural Remedy for Kidney Stones
- A free home remedy! Most sites want cash because they know you are desperate to get out of pain. This site tells you what he does, right on his site! He jumps to work the stone down the ureter in a matter of less than an hour! I have waited much longer than that in an ER.
- Kidney Stones in Adults
Discusses the causes, symptoms, and diagnosis of kidney stones. Reviews prevention strategies and treatment options, as well as information on current research.- OUCH! an animation of the path of a kidney stone.
- eGFR Calculator
- If you know your creatinine, you can check your eGFR yourself. Some Drs.do not mention your eGFR until it is really bad.
It is a measure of how quickly your kidneys are cleaning your blood.
"I have so many stones because I have a congenital kidney defect: Medullary Sponge Kidney or MSK."
Ultrasound of my left kidney loaded with stones!
My right kidney on 8/26/08. I had surgery 9/15/08 and had many of these removed
Ultrasound with Kidney diagram overlay
The white areas are clusters of kidney stones. When I lined up the drawing of a kidney, the pockets align with the renal pyramids.
The renal pyramids contain nephrons. The nephrons are connected to the collecting tubules which deliver the urine to the renal pelvis, which empties through the ureter to the bladder.
In MSK the the collecting tubules, which are in the renal pyramids, are enlarged and urine can pool and stagnate in them, which can cause kidney stones to form.
Kidney stones typically form in the renal pelvis, which is an open area so they can be broken up and removed without damaging kidney tissue.
In MSK the stones are embedded in the collecting tubules. Breaking them up would cause the tubules to be cut up and damaged, causing loss of kidney function and possible kidney failure.
Dr. Wolf, at The University of Michigan, has developed a procedure to remove the stones from the collecting tubules without damaging the kidneys. It is called URETEROSCOPIC LASER PAPILLOTOMY.
Right Kidney Procedure 9/15/08
I had many stones removed from my right kidney on 9/15/08. I still had a lot of left kidney pain and needed narcotic pain relief almost every day. The stent was in for 4 weeks, but I did not feel it for the last 2 weeks. It was removed during the left kidney procedure so I did not feel it this time.
Left Kidney Procedure 10/13/08
I finally had my second procedure done. It ended up being scheduled on my son's 8th birthday. Dr. said he took out about two-thirds of the stones. The new stent is more painful when I am on my feet for more than a few minutes. Can't wait 11/13 I get it out. I do have a big decrease in kidney pain!
"Why would I be thankful I caught the Flu and Bronchitis?"
Loss Of Kidney Function
Antibiotics helped for a while.
A few days after having the last stent removed, I had a blood test. This test showed a dramatic drop in my kidney function. From eGFR went from 69 in June 08 to 53 in Nov. 08.
I was quite scared.
Then in December the entire family caught the Flu. Greg and I developed bronchitis and were prescribed Bactrim. Although I was sick, my kidneys were not painful for the first time in one and a half years. After the Bactrim ran out, my kidneys started aching again. My Urologist agreed to give me 3 months of Bactrim. My kidneys are feeling much better and I am not even passing as many stones.
We think I had a kidney infection that did not culture in the lab.
I am so thankful that I caught the flu. I feel 10 years younger and am active again!
In January my eGFR was improved to 59!
Update July 2009 Kidney function eGFR is down to 57.
Update August 27, 2009 Kidney function is down to 47. I have been in much less pain and I was surprised at these results.
I was quite scared.
Then in December the entire family caught the Flu. Greg and I developed bronchitis and were prescribed Bactrim. Although I was sick, my kidneys were not painful for the first time in one and a half years. After the Bactrim ran out, my kidneys started aching again. My Urologist agreed to give me 3 months of Bactrim. My kidneys are feeling much better and I am not even passing as many stones.
We think I had a kidney infection that did not culture in the lab.
I am so thankful that I caught the flu. I feel 10 years younger and am active again!
In January my eGFR was improved to 59!
Update July 2009 Kidney function eGFR is down to 57.
Update August 27, 2009 Kidney function is down to 47. I have been in much less pain and I was surprised at these results.
Some are smooth and brown, others are crystals growing over the smooth brown stones.
Medulary Sponge Kidney Links
Just don't believe it is asymptomatic, even if you read it online or a Dr. tells you! If you are experiencing pain it is not asymptomatic in your case.
- Medullary sponge kidney
- Medullary Sponge Kidney on Health AtoZ
- Medullary Sponge Kidney Disease (MSK) Help - Forums and Discussions - MedHelp
- MedHelp's Medullary Sponge Kidney Disease (MSK) Help Forum. This forum is for help, questions and support regarding Medullary Sponge Kidney Disease (MSK)
- MSK explained in everyday English!
- provides an easy to understand definition for the medical term, medullary sponge kidney.
What do you think?
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- TS TS Oct 1, 2009 @ 12:10 pm | in reply to Penne
- I am very glad you compensation for that crazy hospital. The problem though is that pill heads have ruined honest people really in pain being able to be correctly medicated and that's sad! I'm glad you were able to find a hospital that cared about you and didn't judge you because of some pill head's problems!
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- ngio64 ngio64 Sep 13, 2009 @ 11:52 pm | in reply to Davebentley
- Wow, my brother found me! I guess the kidney stones run in the family. :,( I hope you had your last one. I fill 2 64 oz insulated 7-11 mugs with ice water every morning and make sure I drink them both before I go to bed. It helps me to remember and it stays cold all day.
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- Davebentley Davebentley Sep 9, 2009 @ 2:07 pm
- I have passed 3 stones and thankfully they passed within hours not days or weeks. During the first two I went to ER and waited over an hour each time after being seen before any pain meds were brought in. Miraculously the stone passed to my bladder just before the nurse arrived with the morphine shot. The third time I spent 6 hours on my couch with my 2 sons watching over me. My stones have been analyzed and are made up of calcium oxalate. My urologist also said that I need to drink 4 times the amount of water that I was in the habit of drinking at the time. All three of the stones have followed periods of dehydration. First one after forgetting my water bottle during a long hot day of rock climbing, stone within 2 weeks. Second was after putting on three roofs in 2 weeks during the hottest weeks of the summer, stone within a week. And the third was a week after I had a bout of bronchitis acompanied by high fever. So for me I need to drink more water. Nice lens Sis.
Dave
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- scotty mchugh scotty mchugh Sep 8, 2009 @ 6:42 pm
- I everyone sorry to hear about your stones & pain I just passed a couple 2and 3 mm ones
but only to fined out that I have 11 mm a 10mm and a 7mm in the right kidney and almost the same in the left side my doc said because I have MSK kidneys there is nothing he can do I would like to know if that is true I've benn passing stones for years the older I get the harder it is on me
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- poutine poutine Aug 22, 2009 @ 6:32 am
- What an informative and well done lens.
Kudos to you and hope you life is better now.
Poutine
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- Lauren Lauren Jul 18, 2009 @ 11:39 am
- I have had kidney stones since I was 12. I was diagnosed with Medullary Sponge Kidney Disease, and have been hospitalized more times than I can count. I have had lithotripsys, stents, and have had my urologist go in and take it out if it's close enough to the bladder. I was just in the ER yesterday. I woke up at 7 am with horrible pain on my left side. They took a CAT scan, both of my kidneys are filled and I'm currently passing a 2mm stone. Its very uncomfy and all the pain meds cause me to be nauseated and groggy. I hope I grow out of this eventually. Also, I have poor medical insurance, so I cant wait to see how much my ER bill is.
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- Mike M. - Lemon Juice test Mike M. - Lemon Juice test Jul 17, 2009 @ 10:45 am
- Just have to share this will all. My wife has been through it all. Her last episode was around 10 years ago and there were so many stones they had to go through her back to remove them. Almost lost her kidney. Well they are back....now had scans - x rays. urologist says left kidney has 2 large stones causing the pain and to large to pass...next scheduled for a stent in 2 weeks and see if he can use laser to crush them.
Well we read so much about the lemon juice & olive oil and give it a try before she goes in. To our suprise when the surgon goes in he does not find the 2 big stones. Says he must have moved them and can not see them. So she winds up with a stent only.
The pocket with the 1 inch cluster still remains and she has lipotripsy. Now passing fragments.
We take a large stone and do a test. Put it in lemon juice. I called my wife from work 6 hours later. She said she picked the stone out of the juice and guess what...it fell apart to nothing. Oh my God..Imagine that!
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- ngio64 ngio64 Jun 13, 2009 @ 10:07 pm | in reply to Tee324
- Very Nice, I will lensroll your lens!
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- Tee324 Tee324 Jun 13, 2009 @ 3:22 pm
- Very good lens! I just experienced kidney stones and outlined my experience and what I've learned in one of my lenses. Tell me what you think?
http://www.squidoo.com/aboutkidneystones
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- ngio64 ngio64 Jun 3, 2009 @ 8:58 am | in reply to FrancesFarmer
- I am sorry to hear how much you are suffering. I am taking Bactrim daily and I no longer need pain medicine. Perhaps you have a subclinical UTI from the procedure & stents. I would suggest you ask your doctor what he thinks of a trial of antibiotics to see if you improve. I always had positive urine dips but no bacteria would grow when cultured.
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- FrancesFarmer FrancesFarmer May 26, 2009 @ 10:55 pm
- I suffer from chronic kidney stones, UTIs, flank pain, abdomen pain. This is due to the Medullary Sponge kidneys both left and right. Over 15 years I have had too many too count. I hope to request a referal to a kidney specialist as I am only treated by the urologist for the kidney stones.
My pain has become more frequent and intense after this last lithtripsy and 34 day stent my body rejected. I have also passed two larger stones and two small gravel like pieces. Now I have major pelvic pressure, urinary frequency, burning, right lower abdomen pain with left back flank pain.
I am sometimes debilatated by this pain and nausea the over come me. I also find it difficult to have MSK without medical support, people just don't understand. This leaves me silently suffering and worrying about when the pain is going to take me back to the ER and multiple hospitals (last time it was three hospitals over a weekend).
I am grateful to all who have taken the time to read my post.
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- missthang missthang May 26, 2009 @ 6:48 am
- my brother has a kidney stone.And he is only almost turning ten.
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- Shelley Shelley Apr 2, 2009 @ 10:33 am
- Great Lens Nancy !
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- kimberlyfra kimberlyfra Mar 25, 2009 @ 1:21 am | in reply to ngio64
- To you (& any of you that have had a stent in before) did you bleed alot? I did! But, it made me pass SO many stones! Some attached to the stick itself & lots fell out onto the toilet & floor afterwards. I want to do it again to get rid of a bunch more I have now, but am scared for how much I bleed from it.
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- ngio64 ngio64 Mar 21, 2009 @ 2:48 pm | in reply to amy becker
- Hi, I am sorry you are in so much pain. When I have a stent in, I try to not bend or twist, empty my bladder often. (it hurts more when it is full.) and take a tranquilizer with the pain medication.
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- amy becker amy becker Mar 21, 2009 @ 6:01 am
- On my left side in march 09 i had my 4mm stone lasered and that was fine, still have the stent, but i passed a 2mm stone on thursday of this week and my urologist put a stent in because there's 2 more stones in my ureter, i believe this is the worse pain with this stent. The pain meds are not working and the heating pad gives maybe a tiny bit relief. anyone got any ideas, cause i'll try just about anything. please help
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- Juan Sosa Fernandez Juan Sosa Fernandez Feb 26, 2009 @ 1:17 am
- I been suffering from kidney stones for the last 35 years.I was only 19 when it happens for the first time, and I keep getting the horrible pain almost every year so I can say my stones are like the energizer bunny they just keep going and going,so I hope to get rid of them before they kill me
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- Deb Deb Feb 19, 2009 @ 6:40 pm
- I've suffered from 3 kidney stones. Once in 2000, and then twice while I was pregnant in 2006. On Jan. 1st of this year I was in the ER with the most incredible pain, but not quite the same as kidney stones. They came up with the diagnoses of a ruptured ovarian cyst, but then during the CT scan they discovered quite a collection of stones in my right kidney. Two are about 6mm in size. I've been doing alright with no pain until this morning. My right backside is killing me! Though the pain hasn't been gradually increasing as it usually does with the stones I've experienced. It's just been a constant irritating pain that doesn't get better and doesn't seem to be getting
worse ......yet. I keep debating about going to the ER because the Advil and Tylenol dont' touch it, of course. I don't even know why I bother...... I"ve never had the pain just stay at a constant without getting worse or better. Any thoughts on what I should do?
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- Tara Lang Tara Lang Feb 17, 2009 @ 2:42 pm
- Wonderful site! I have suffered from chronic kidney stones for several years now (I am 27 years old). I have an attack, on average, about every 3-6 months. They originally diagnosed them with IVP in the ER. Since then, it has been an ongoing battle. I've only managed to catch one stone which was not much bigger than a grain of sand, though I've been not so diligent about catching them. My stones began after being put on calcium supplements to counteract the side effects of osteoporosis caused by the Depo-Provera injection. Needless to say, I quite both those medications. More TRUE independent research needs to be done. My previous stone almost shut down one of my kidneys and caused infection. I was luckily able to avoid the hospital, though. Now, I have another one... I wish they would pass much quicker; it takes me 1-4 weeks to pass one. I always take Vicodin 7.5 and Xanax to ease the weeks of passing the stone. Thanks for the site! God Bless everyone going through this!
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- ngio64 ngio64 Feb 9, 2009 @ 12:40 pm | in reply to Michelle
- I think the medical profession looks for certain signs that help them figure out if someone is drug seeking. If you are only going every 3-4 months, you are probably safe! Also if they see a stone they should stop doubting you!
Have you been to Medhelp's MSK forum. We are very supportive there.
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- Michelle Michelle Feb 9, 2009 @ 12:10 pm
- I too, have MSK and stones and the pain is sometimes unbearable. My husband doesn't understand that when I have to go to the ER to get something for the pain that I am not kidding! I wish more people knew about MSK and stones--even the docs in the Er look at me funny sometimes. I am a well educated person and well known in our small community, but I am afraid that the docs and nurses are going to think I am addicted to them pain meds. I am in the hospital ER usually every three to four months with another round of stones.
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- Michelle Michelle Feb 9, 2009 @ 12:09 pm
- I too, have MSK and stones and the pain is sometimes unbearable. My husband doesn't understand that when I have to go to the ER to get something for the pain that I am not kidding! I wish more people knew about MSK and stones--even the docs in the Er look at me funny sometimes. I am a well educated person and well known in our small community, but I am afraid that the docs and nurses are going to think I am addicted to them pain meds. I am in the hospital ER usually every three to four months with another round of stones.
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- ngio64 ngio64 Feb 6, 2009 @ 2:56 am | in reply to Tina
- Tina, In my experience, when the pain is unbearable, the only thing I can do is go to the ER. Sometimes IV pain medication is all that will work. I hope your husband is feeling better very soon.
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- Tina Tina Feb 6, 2009 @ 12:09 am
- My husband had lithotripsy today and he is so miserable I dont know what to do. He had a stent and they had to go in through a very uncomfortable area to break the stone and place the stent. His pain is bad. he is taking 5/500 vicodin, but nothing is touching it. This is 6 hours post procedure and I am not sure at what point I should take him to the ER. The doc called me and said that other than going to the ER there isnt much that can be done tonight, but to call his office tomorrow for stronger pain meds. Any suggestions? Help!
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- Tina Tina Feb 6, 2009 @ 12:09 am
- My husband had lithotripsy today and he is so miserable I dont know what to do. He had a stent and they had to go in through a very uncomfortable area to break the stone and place the stent. His pain is bad. he is taking 5/500 vicodin, but nothing is touching it. This is 6 hours post procedure and I am not sure at what point I should take him to the ER. The doc called me and said that other than going to the ER there isnt much that can be done tonight, but to call his office tomorrow for stronger pain meds. Any suggestions? Help!
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- Judy Judy Jan 7, 2009 @ 9:36 pm
- I had a kidney stone and a stent. I am suppose to get the stent out tommorrow..Will it hurt.?.My back still hurts..Why? I am bleeding and peeing alot...Thank you
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- Penne Penne Jan 1, 2009 @ 10:39 pm
- Just completed my first and hopefully last kidney stone. I had always cringed when I heard others who had them, but I had no idea just how bad it was and is. Mine was 9mm and after six weeks, two stints, ultra sound shock waves that did nothing, and laser shock waves, finally the bastard is gone. Had much worse flank pain with the second stint after the laser for some reason. The stint really hurt a lot the second time for 17 days until they took it out. Could not have survived without the pain meds. Even then it was exhausting and dibilitating. Three days later I'm still feeling achy all over and exhausted from all the pain. Still having some flank pain and ureter pain as I'm passing some small pieces. I'm 46 year old female and don't know why I'm just now getting stones? Can't wait to find out why. Thank you for your site. It's very informative!
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- Sean Sean Dec 5, 2008 @ 1:59 am
- I have had 2 basket captures and 4 surgeries where a tube was inserted through me back and into the kidney. Nephrostomies (http://en.wikipedia.org/wiki/Nephrostomy) since 1991.
My last emergency visit went badly. The hospital nursing staff took the position that I was in the ER, only to get morphine. The nurse claimed that she had heard me snoring from her station after I received a shot of morphine. I had been in pain for 3 days with no sleep.
They sent me home, and I was so embarrassed that I refused to go back to a hospital for 3 weeks.
The stag horn stone got infected and shut the kidney down. When strands of infection came out while peeing I decided to go to another hospital. Holy Cross in Ft. Lauderdale Fl is a godsend. They were very concerned and professional despite me being uninsured. At first they warned that the kidney was not savable. But they did save it,
3 weeks in the hospital.
Received $100,000 from other hospital about 6 months later. AND an apology letter
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- Rebekah93 Rebekah93 Dec 2, 2008 @ 8:31 pm
- what a well written informative site!
Great job!
I have not had kidney stone ever in my life, but my Mom has & it looks extremely painful She is in pain alot. even with meds.
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- Shelly Shelly Nov 29, 2008 @ 5:08 am
- Nancy this is great! I am going to add this link to my website for MSK! I hope that is OK?
I am soo glad you are going to CL the board! It amazes me how much we have in common!
Shelly
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