Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
I had a horrific kidney stone attack last night, ended up in the ER. They did a CT and said it is 7.5mm and triangular shaped. It's too large to pass. They offered to keep me for pain control but my fear of needles and hospitals won over. They said that I'll definitely need a lithotripsy and sent me home with snit-nausea meds and torridol- the only medication that works for stones for me. They tried Dilaudid but, as I'd told them, only the non-opiiod Torridol works for my stones.
I had 2 very kind docs, but they seem so short-sighted. Both said they'd stay for pain and nausea control if it was them, and last night I wished I had. But the important part- scheduling the lithotripsy could NOT be done!
We'd planned on going home for Xmas on Tuesday. If the hospital had been prepared, they could've arranged for the damned thing to be taken care of today. Instead I'm supposed to phone my Urologist (from same hospital!) Monday morning. This is the worst, most painful stone I've ever had and I've gone from being sure I was dying of pain to being so angry I could spit.
It's as if they don't CARE to make anything easier or at least have it make sense. My Urologist works at the hospital. WHY couldn't they CALL the Urologist on call? I asked about staying, as they'd given me the choice, and if THAT would speed up the decision on how to get rid of this sucker of a stone. Nope. The stay would've been for pain and nausea control only. I would NOT have seen an Urologist.
So now I'm on hour 30 of this awful mess, with no plans for the stone that is SO dangerous, as they explained repeatedly. I've kept the pain manageable for about 10 hours by taking the Torridol and my RSD pain med on regular schedule, plus anti-nausea drug. But The whole thing is just wrong. WHY couldn't they call the urologist on call? Why do doctors sometimes just make NO sense?
I'm in pain and sad and angry. My 5 year old has been looking forward to seeing our family for Christmas. He hasn't seen my Dad in a year. 3 families are going out of their way for us. But now, either way, we won't make it home for Christmas. And I have a good chance of being in the hospital for Christmas, if they don't do something soon.
I hate being self-pitying and angry, but I am. I hate this! I hate living away from all our friends and family. My hubby has to take tomorrow off b/c we have no idea what is going to happen. The ER docs were so uninformed about stuff like this. They were nice guys and wanted me to be comfortable and keep fluids down, but they totally pass the buck when it comes to what will happen to me and when.
I've been in bed for almost 24 hours now and other than a warm bath, I'm dizzy, have a headache and chills off and on, and the worst pain of my life, which is saying a lot. I'm propped up against the laptop with a heating pad on my right flank, and writing this in between spasms. Last night I had such serious pain for over 3 hours that I was certain I would die. I couldn't move and everyone was asleep in other rooms.
How do I make them take me seriously? I just want the damned thing blasted away. A sip of water with pills makes me hurt SO BAD for about 20 minutes that I'm scared to drink anything. The stone is up high, according to the docs and the CT scan, and I feel it low, and all over my right side. This is one of my worst nightmares. I'm terrified of needles and hospitals to the point that I put myself through agony last night. I THINK i have the pain as controlled as possible right now at home, but if it gets as bad as last night, we would have to go back.
Why now? I haven't had a really bad stone in over a year. I had preventative kidney litho in March. It amazes me how it is possible to forget that pain. Maybe I block it out. But this is NOT how this week was supposed to go.
The doc kept saying it's not just the size 7.5 but the odd shape that means it won't pass on its own. I'm just not up to another surgery/procedure and am terrified I won't get MY doc and will get a doc that does stents. I do NOT want a stent. I just want it gone. At least I know how the litho works, although mine was in the kidney.
Ugh- I just don't know. Sorry for the rant. This time of year it's usually the RSD but we've had milder weather. I feel like the Grinch for ruining my family's plans. And I'm SO confused as to the doctor's orders. Call my Urologist Monday. One doc said maybe they'd get it all done by Monday but I KNOW how hard it is to even get the right doc on the phone! And even then it's not a fun recuperation.
I guess I'm just not used to the unknown. Such as- what is the stone doing if it is too big to pass? Does it just hang out in the ureter? Both docs said the odd shape was another reason it was causing such bad pain, but if it escaped the kidney, couldn't it possibly pass without intervention?
Ugh, I'm so tired. So, so tired and so much in pain. I had such great plans for this week and now a stupid stone is ruining it. I feel like a whiny teen ager! Sorry- hope I'm not ruining anyone's Holiday Cheer. I'm just feeling so...ruined.
I had 2 very kind docs, but they seem so short-sighted. Both said they'd stay for pain and nausea control if it was them, and last night I wished I had. But the important part- scheduling the lithotripsy could NOT be done!
We'd planned on going home for Xmas on Tuesday. If the hospital had been prepared, they could've arranged for the damned thing to be taken care of today. Instead I'm supposed to phone my Urologist (from same hospital!) Monday morning. This is the worst, most painful stone I've ever had and I've gone from being sure I was dying of pain to being so angry I could spit.
It's as if they don't CARE to make anything easier or at least have it make sense. My Urologist works at the hospital. WHY couldn't they CALL the Urologist on call? I asked about staying, as they'd given me the choice, and if THAT would speed up the decision on how to get rid of this sucker of a stone. Nope. The stay would've been for pain and nausea control only. I would NOT have seen an Urologist.
So now I'm on hour 30 of this awful mess, with no plans for the stone that is SO dangerous, as they explained repeatedly. I've kept the pain manageable for about 10 hours by taking the Torridol and my RSD pain med on regular schedule, plus anti-nausea drug. But The whole thing is just wrong. WHY couldn't they call the urologist on call? Why do doctors sometimes just make NO sense?
I'm in pain and sad and angry. My 5 year old has been looking forward to seeing our family for Christmas. He hasn't seen my Dad in a year. 3 families are going out of their way for us. But now, either way, we won't make it home for Christmas. And I have a good chance of being in the hospital for Christmas, if they don't do something soon.
I hate being self-pitying and angry, but I am. I hate this! I hate living away from all our friends and family. My hubby has to take tomorrow off b/c we have no idea what is going to happen. The ER docs were so uninformed about stuff like this. They were nice guys and wanted me to be comfortable and keep fluids down, but they totally pass the buck when it comes to what will happen to me and when.
I've been in bed for almost 24 hours now and other than a warm bath, I'm dizzy, have a headache and chills off and on, and the worst pain of my life, which is saying a lot. I'm propped up against the laptop with a heating pad on my right flank, and writing this in between spasms. Last night I had such serious pain for over 3 hours that I was certain I would die. I couldn't move and everyone was asleep in other rooms.
How do I make them take me seriously? I just want the damned thing blasted away. A sip of water with pills makes me hurt SO BAD for about 20 minutes that I'm scared to drink anything. The stone is up high, according to the docs and the CT scan, and I feel it low, and all over my right side. This is one of my worst nightmares. I'm terrified of needles and hospitals to the point that I put myself through agony last night. I THINK i have the pain as controlled as possible right now at home, but if it gets as bad as last night, we would have to go back.
Why now? I haven't had a really bad stone in over a year. I had preventative kidney litho in March. It amazes me how it is possible to forget that pain. Maybe I block it out. But this is NOT how this week was supposed to go.
The doc kept saying it's not just the size 7.5 but the odd shape that means it won't pass on its own. I'm just not up to another surgery/procedure and am terrified I won't get MY doc and will get a doc that does stents. I do NOT want a stent. I just want it gone. At least I know how the litho works, although mine was in the kidney.
Ugh- I just don't know. Sorry for the rant. This time of year it's usually the RSD but we've had milder weather. I feel like the Grinch for ruining my family's plans. And I'm SO confused as to the doctor's orders. Call my Urologist Monday. One doc said maybe they'd get it all done by Monday but I KNOW how hard it is to even get the right doc on the phone! And even then it's not a fun recuperation.
I guess I'm just not used to the unknown. Such as- what is the stone doing if it is too big to pass? Does it just hang out in the ureter? Both docs said the odd shape was another reason it was causing such bad pain, but if it escaped the kidney, couldn't it possibly pass without intervention?
Ugh, I'm so tired. So, so tired and so much in pain. I had such great plans for this week and now a stupid stone is ruining it. I feel like a whiny teen ager! Sorry- hope I'm not ruining anyone's Holiday Cheer. I'm just feeling so...ruined.
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I know this is stupid, but after not being able to find a job after graduation for almost two years, I ended up just taking an online teaching job because I couldn't find anything in my field. I was trying to get out of teaching and I feel so devastated. I felt this crushing feeling when I signed the paperwork and when I was in the meetings. I know that sounds so dramatic but it is how I felt. It...
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Tomorrow is National Massachusetts Day!Have you ever lived in or visited Massachusetts? If so, tell us what's great about the Bay State!
HUGS - one thing about kids, is if you make Xmass about family, even it is just a couple of you, it will be enough.
Everyone I know is not having the Xmass they want.. Most of them due to money. This is the way it is with us. I have a ham to make for dinner, but hubby has to work a 12 hour shift that night, so he will sleep the whole day other than an hour or so before he leaves for work.
HUGS
I hope they can get you in soon. I wish you good luck and hope feel better.
If they can do litho without a stent in the morning, I'll be happy. The docs both said it was still high up, and had really not much of a chance of passing. I suspect they'll do another CT scan and then go from there.
Having NO family nearby, Christmas is the only time my son sees family. He's 5 and has no brothers or sisters, so he was counting the days until our original date, Tuesday. But I'm guessing the best I can hope for is a procedure tomorrow (Monday) and maybe we can still leave, a day later, Wednesday. We'd have to do some moving around and I'd be pretty uncomfortable, but I'd do it for my son. This is where having NO family nearby really sucks.
I'm hoping for the best and preparing for the worst. If I take the meds all on schedule, I seem to finally settle down a bit (but waking up in a start b/c the pain increases in your sleep is scary!)
It all depends on my doctor tomorrow. I am praying she is there and working! I'm scared enough with this big stone in my ureter, I don't want to pass another night w/o it being treated. If I hadn't had plans this week I wouldn't be so nervous, but we had to miss Thanksgiving and Halloween AND Easter. Jaden is just over the moon about Christmas at Grandma's and Nana's and Aunt Shellee's, and I hate to disappoint him. For that reason I truly pray that the urology department is at full staff tomorrow!
HUGS keep us posted
you are both in my prayers
At 5pm she called to say it's BAD and she will be looking for a time and place for a lithotripsy. But if it gets worse before she can arrange one, I might need a more invasive and less helpful surgery that often takes 2 times to work. I have NO idea what she is referring to.
There are 2 other ways to get this stone but it is so high up and so large that she'd rather not do one of them, and the other involves a stent which I managed to avoid last Spring and hope to avoid again. But the main line is that Xmas is ruined. We can't travel, I can't be alone, and my poor little boy is stuck here without anyone but my hubby and I. DH had to take time off work to care for me as I can't be left alone, and there's not much we can do here for the holidays.
I'm just so angry! They told me Sat nite that this had to be arranged and the ER docs were so sure that Urology would get it done Monday. Instead I got scolded for calling once too often and they don't seen to give a hoot that by not getting me in today they ruined a family's holiday. We had 3 stops to make in 2 days and doc said absolutely not, I cannot travel.
I PRAY she finds me a litho soon, and we'll redo the holidays after, but meanwhile I feel like crying every 5 minutes. I hate this! Isn't it enough to have RSD? No- now I have to deal with these huge stones that don't move and threaten my health. But as bad as they tell you it is, they don't do much! I've always loved my urologist- she's funny and fun to talk to. But I can't get over her just letting me slip through the cracks today! I had the KUB done by 9am! She had openings this afternoon. Even the nurse seems confused.
Maybe it was pride? Maybe she couldn't accept Saturday night's CT scan? I don't know but my holiday is ruined, my body is wracked with severe pain, and the hospital/docs don't seen to know what the hell is going on. I'm so disappointed.
I am so sorry. you and your boy are in my prayers.
On a side note, she may have just been having a bad day herself? It does not make up for your ruined holiday, but there could be unknown reasons behind what it going on with the doctor.
hugs
hang in there!!
I'm sorry. I wish I had more to offer you.
I think I LOST my mind when they didn't return my calls all day. I had expected them to say MAYBE as late as next week, but as dangerous as they're making it sound and as awful as it has been, I am truly shocked.
They sent surgical forms for 2 surgeries- litho and a stent. The stent is MY choice. But I've spoken to so many people who said the stent is the worst part, plus even the surgery coordinator said that if I'm as touchy as I admit, it's probably not for me. The urologist said it would calm down (the pain) after a few days, and as the stone can't move, I can "live with it" for over a month. She apologized and said she wished she could do it ASAP but there's no machine.
I was feeling a bit better thanks to the Flomax, Torradol, and my RSD meds, so I did go home for Xmas, although I was miserable about half of the time. But I figured I could be miserable here, or miserable there, with family. I even spent the last night alone at a hotel with a jacuzzi to get some relief as the car travel (never my favorite way to get around) was too much.
So now I'm home, and get this- the LEFT kidney is aching. WTH? I'm taking the torredol sparingly b/c it's not supposed to be longer than 5 days. But I'm not taking it as often as needed and can get by on one a day instead of 6. I have a refill for 20 more but I have like 30 days till the surgery. And I'll want that refill for after the surgery.
I DO fear that my left kidney is now compromised too, either by the medication or another stone. I'm nauseous but not vomiting, have some pain free hours in the day (kidney stone related- I still have the RSD pain) and we're home so I was able to rest today. My hubby is off tomorrow b/c we were supposed to still be gone, but after that i have 4 days of my son being home from school. I should be glad my hubby only works 3 days this week b/c of New Year's.
No one could believe that someone with a 7.5mm stone stuck in her ureter would not be considered an emergent case. My Dad, who has had as many or more stones than I have, says he's shocked. When he had a stone stuck, they went right in to get it. More worrisome is the over 20 stones left in each kidney! I travel every month- what if this happened on a plane? Out of the country?
I'm PRAYING that someone passes their stone so I can get on the litho list for next week. It only takes one, and I'll get this sucker blasted. Meanwhile I'm resting when I can, but awfully freaked by the left kidney problems. It feels like my right kidney did where the stone is caught. It would be JUST my luck!
But I did get a call changing my surgery from the 22nd to the 15th. Someone cancelled. Now I just need someone to cancel NEXT week and I can get it done faster.
Today was a better day, but tomorrow my hubby works and I've got my son. I invited a friend over with her daughter, so if something happens, I'm not alone. And if we take them out she'll have to drive.
I forgot my Flomax yesterday and am wondering if I should take it today. The ER doc thought I'd be getting surgery ASAP but we all know how that turned out. If the Flomax makes the ureter softer, easier to pass the stone, why would that help THIS stone? I hurt after I take it, unlike when I take it PASSING a stone. I guess I should call and ask, and also plead for them to slip me in earlier, anyplace, anytime, for the litho.
My question now is, if she manages to shatter such a large stone, won't it still feel like I'm passing 2 smaller ones? Or, several smaller ones? I've gone almost 24 hours w/o taking any Torradol and am desperately trying to save every one for after the surgery. Why it does such amazing work on kidney stone pain when no opiate works for me, but still damages the kidneys after more than 5 days taking it, astounds me! They finally find a miraculous kidney stone drug but if you don't pass it in 5 days, you're in for it?
I'm shocked I've made it this long with a stone that big in my ureter. I'm used to the RSD pain and the meds work well for me. But nothing but Toradol works for the stone pain. And in the ER they gave me one dose of Toradol but 2 or 3 of dilaudid, which I TOLD them would do no good. I KNOW they were trying to help- I was a mess. But they were pushing the narcotics that don't work and holding back the non-opiod Toradol. It IS a miracle drug, IMO, but damn, they need to figure a way we can take it as long as we need to.
Meanwhile, I'm surprised they aren't asking me for urine output info, etc. As dangerous as they explained this is, they're acting like it's just a sore tooth or something. What did people do in the olden days, before lithotripsy? Did people like me just die of kidney stones?
My friend wants me to drink lemon oil, though how that will help I have no idea. I AM drinking as much lemonade as my stomach will tolerate. This is like the Neverending Story. Now I need to make it another 2.5 weeks.