Has Anyone Ever Heard Of Having 2 Procedures?
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I just joined, and I think I posted my question under someone else's question, so I'm going to re-post it here. Sorry for the mix up. In Aug. a CT Scan showed I had a 7mm stone at the Ureteropelvic Junction. When I would urinate, it would be all blood. In the middle of Sept., I had a great deal of pain (went to ER), and another CT Scan showed the stone was 9mm, and had moved to Distal part of Ureter. Went to Urologist. He scheduled a procedure on Oct. 23rd, to remove stone, as stone was blocking urine flow from kidney. Was done thru Short Procedure Unit at hosp. Was given Propofol, Versed, & Fentanyl thru IV, and then given a Spinal - could not have a general because I have severe COPD - Emphysema. Doctor could not get the stone out. It was impacted in the wall of the Ureter. He used a Laser, but stone would not break up. Put a stent in to let the urine flow, and to make Ureter open up. Have had stent in for 7 weeks. Scheduled to have another procedure this week to see if he can get the stone out this time. Was told he's going to use a Laser again, and since that makes the Ureter swell, I'm going to have to have another stent put in, so urine will be able to flow thru. Any comments about "this mess" would be greatly appreciated, as I am really scared.
0 likes, 26 replies
Assassin1999 Barb1705
Posted
I am so sorry you are going through this. I am concerned as to why he thinks the same procedure will work this time when it failed the first time. Is he planning a different technique while using the same method? I hope he won't charge you for both. As a self employed tradesman, I don't get to send 2 invoices if I don't get the job done the first time. I realize money is not your first worry right now........I hope you will ask him how he plans to make it work this time. So were you awake or semi-conscious for the 1st procedure?
Barb1705 Assassin1999
Posted
Luna_Sea Barb1705
Posted
My first experience with a kidney stone was a nightmare, but not nearly as bad as what you are describing. After my treatment was over, I found another urologist. The first doctor dragged out my kidney stone removal process to about a month (I missed work the entire month), charged my insurance company an arm and a leg and fully sedated me twice for what I later learned were unnecessary procedures (I didn't need a stent placement for a lithotripsy and I didn't need to be sedated to remove the stent). Reading your story and others like it upsets me. I don't understand the long delay between procedures, leaving stents in for weeks or longer and how a stone can get impacted into a ureter? I have an oddly shaped kidney and it really didn't want to give up a large stone tucked away deep inside it, but my current urologist was able to get at it and break it up with a laser. If this doctor can't get your stone out after this next procedure, the next step is finding a new urologist and a second opinion. (I found my new one by word of mouth from people going through this). Not only that, but if he gets the stone out, you should be getting that stent removed in a week and not at his convenience. My new urologist took care of everything in a little over a week. Saw him one day to discuss removal, several days later I was getting a uretorscopy with laser lithotripsy/ stent placement and several days after that, he pulled out my stent. Done. What took my first doctor a month took my second doctor less than ten days. I've also had to be a bit aggressive with the scheduling staff because they are happy to put you off for weeks even after the doctor tells you to see him on a specific date. You have to be firm with them. I'm stumped by the impacted stone in that location...I've never heard of that happening. Seems to me like the stent placement would push it back into the kidney? Seriously though, you should ask around for a good urologist recommendation. I'm an aesthetician and while I was giving a client a facial treatment, she told me about her amazing experience with this practice and it was the best decision I ever made to change urologists.
Barb1705 Luna_Sea
Posted
I just checked, and the hospital (not doctor, only hospital) bill for the first procedure back in October, was over 21 thousand dollars.
There are 2 groups of urologists in the area. The group I'm going to, has been around for many years. And the doctor I go to in the group is young (early 40's), and there are other young doctors in that group, as well as older ones. And before going to him I asked my Cardiologist if he was any good, because unlike most doctors who won't talk about another doctor, my Cardiologist will. He has always been very honest with me, and if he doesn't think a doctor is any good, he will tell me, because he knows I won't repeat what he says. In fact, my Cardiologist as well as his wife, have both gone to this urologist, and he said he is the best. But when I told him what has been going on, he was not happy to hear that, and told me to keep him updated.
A woman who lives in the same apartment building as I do, went to a urologist in the other group I mentioned, and she was pleased with him, so if my urologist doesn't get the stone out this time, I'm going to go to the other urologist. That is, if the other urologist will take me on as a patient, with a stent in me, because from what I understand, during the upcoming procedure, he's going to take the stent out that's in there, and hopefully also get the stone out, and then place another stent in there to keep the Ureter open after he uses a Laser on the stone.
Assassin1999 Barb1705
Posted
My whole kidney stone ordeal lasted about 5 weeks. Sept. 29, 2017, was a Friday. I got home around 5:30pm with my wife. I quickly showered, put on jammies, and called my mom. My wife was making dinner. I was in a great mood. I had just finished a job and gotten paid, plus it was the weekend and I was actually getting 2 days off! I'm on the phone with my mom for 5 minutes, when I got a sudden sharp pain up high on my back (right side). I thought maybe I pulled something while working, but it just kept getting worse and worse. After 20 minutes, I couldn't sit still, I was writhing, and I told my Mom I had to go so my wife could drive me to the ER. The pain was excruciating! ER was packed that night. I waited for 3 hours total. After the first 1.5 hours, I felt the sharp pain "move along", my face got really hot, and suddenly the pain dissipated entirely. I was so relieved, and also very exhausted all of a sudden. I waited the additional 1.5 hours because I had given a urine sample that was the color of coffee and wanted to have tests. Myself and 2 others got tired of waiting and I was falling asleep in the chair, so I left. I consulted my doctor on Monday Oct. 2. He ordered a CT scan which showed 4mm stone had left the kidney and was 3/4 of the way down the ureter, approaching the junction to bladder. He said to drink lots of water to pass the stone. I was due to go on vacation Oct. 10. We had been planning for a year, so really didn't want to cancel as whole vacation was already paid for. Over a 3 days period, I drank about 4 gallons of water. I spent so much time peeing, that I left music playing in the bathroom. Didn't pass a stone. But no blood or pain either. I had been using Chanca Piedra "Stone Breaker", Oct. 7 I had my second "episode". Pain and nausea lasted about an hour. So I had my answer. Doctor prescribed FloMax to help move things along. Again I drink loads of water for next 2 days. Nothing. I decide I'm not going to let it rule my life and we go on vacation anyway. Everything was fine until Oct. 15 (3 days before going home). I had another episode. Lasted about an hour again. Pain and nausea. I hate being ill at all, but being ill in a strange place instead of the comfort and privacy of your own home makes it even worse. The last 3 days of vacation are eclipsed by this, and we sit around the room until Oct. 18. We get home, I call the doctor. Over the next few days another CT scan, urine sample, more water. All that water I drank moved the stone a whopping 2 cms from where it was at first CT scan. At this point still trying to pass it on my own. Oct. 25. I had kept working (I am a painter) during this time. I hoped it would help things mosey along. By this night, I got home, and began another episode. I wouldn't have thought it was possible, but this one was FAR worse than the others. It lasted about 16 hours. Extreme pain and nausea. The only thing that provided any relief was sitting on my knees in the shower and letting the hot water hit my back. I spent hours in the shower, only stopping to let the hot water replenish. A heating pad helped a little in between. I was so miserable. I kept thinking, maybe this is it. Maybe it will pass soon. By 8am, my wife took me to the ER. Where I live, there are 2 hospitals. The first ER trip was to the closest one, which is not in the preferred network of my insurance company, but it was closest. This time, my wife drove me the extra 18 miles to the other one, which is in the network that my primary doctor is part of. I was seen right away. They dosed me with Dilaudid and Zofran. I was in and out of consciousness for the next few hours. They gave me a blanket and I was so warm and fuzzy. I felt great. The best I had felt in a month! Another CT scan revealed the stone was stuck at the distal junction. Kidney was blocked. Function in my right kidney was almost completely stopped. They drew blood. The results were chaos. I needed to see a Urologist to discuss an operation. Unfortunately, the one and only Urologist at this hospital was on vacation for another week. Back to the other hospital we go (the next day). Oct. 26, I see the Urologist. He brings me in the very next day. Oct. 27, he performs a 1.5 hour operation involving a ureteroscopy. He blasted it with a laser, removed the pieces, and installed a stent. For the next week, I recovered at home with pain meds and anti biotics. The stent was uncomfortable, but not really painful. The first time I urinated after getting home, it was the color of red wine. The stent remained for a week. Nov. 3 stent is removed. The removal lasted about 10-15 seconds. It stung, was uncomfortable, sent shivers up my spine, and was embarrassing (there were 2 nurses doing the deed). For about 48 hours after that, urination was sometimes a little painful, with blood off and on. Clots and mucus form around the stent inside your body, so I peed out "chunks" as well during this time. Been fine so far ever since. Worst 5 weeks of my life. Sorry for the TMI and for the long story. I didn't intend to write this much, but feels good to sort it all out in detail. Reading it makes me want to drink water! I guess the moral(s) of this story is, a) Don't wait for things to pass. Get a CT scan, and get pain meds and Zofran for nausea. No need to be in so much pain. I still don't know if my kidney was damaged, although I feel great overall. I go back for blood panel in April. b) Barb, there's no reason they should be dragging this out. I hope things go well during and after this 2nd operation for you. In any case, you need to be assertive and even a little boisterous. Nobody deserves to suffer like this. Keep us posted!
Derek
Barb1705 Assassin1999
Posted
Hi Derek, Thank you for sharing your Kidney Stone experience. I'm truly sorry you had to suffer so much pain, but I'm glad everything turned out okay. I'm in my 70's, and throughout my life, from time to time, I would hear someone talk about having a kidney stone, but they never went into detail. So until I got one, and until I started reading about other people that have, or have had them, I never knew how painful they could be. Having one really is a nightmare.
Sorry it took me a while to write back to you, but my Home Health Aide came and I had her drive me to the Urologist's office to find out exactly what he plans on doing during surgery, and to make sure he doesn't plan on making an operative incision. That would be a big NO, NO. The reason I wanted to check, was because the hospitals around here have a Patient Portal where you can see what the doctor is going to do, and when you have an appt., etc. And when I looked at it this morning, the info. on there about what was going to be done, was different than what was written on the paper he gave me when I was in his office. Well, it took a while, but I finally got my answers, so hopefully everything will go okay, and that he will be able to get the stone out.
Assassin1999 Barb1705
Posted
Barb, I was telling my wife your story, and she brought up a good point........with your COPD, maybe they are not wanting to be too harsh on your body, and are giving ample time in between procedures. My mother-in-law had delicate health for years before she died, and would occasionally get frustrated by the doctors' seemingly "lack of motivation". When asked, they said they didn't want to rush things unless it was necessary due to health concerns. Just a thought........
Barb1705 Assassin1999
Posted
Hi Derek, That was a good point that your wife made about time between procedures and COPD, but unfortunately I don't think that's why he took so long. A local magazine has him listed as a TOP Doctor in urology for the past 5 years, but I think he treats his patients as numbers, and thinks of them as being on an assembly line for surgery. He operates every morning, then has office hours in the afternoon. He's already done 6 operations on the same day - usually does 4, so I think his schedule was full, and he just figured that I could wait. I'm just glad my Cardiologist and my Pulmonary doctor aren't anything like the Urologist.
Assassin1999 Barb1705
Posted
Well, I fear you are right about the Urologist. Too many doctors are like that. They act like a patient coming in for a procedure is no different than bringing your car in for an oil change. In fact, I went to the tire shop last week and the guy talked my ear off after inspecting my brakes and tires. He went into to so much more detail than I expected, as though he was deeply concerned about it all! I wish doctors did that. The Urologist that operated on me didn't even know that my blood results were so out of whack until I asked him about it on the same day that I was getting the stent removed! Doctors should be held to the highest standard of any occupation. Human life/health should not be trifled with. Trifle with my car, trifle with my food order, trifle with the guy painting your living room, but never trifle with someone's quality of life! That's how I feel anyway. And no worries on the delayed response. I get email alerts when posts appear on here and I check it every morning. I've been working 12 hours a day for the last week, so only got home about an hour ago. Take care and keep us posted!
Derek
Luna_Sea Barb1705
Posted
That's really unfortunate if the delay is due to COPD. Kidney stone pain, the stent, all of it...doesn't feel like it can wait when one is going through it. I think you should ask if this is the case. The stent has been the worst part for me and having it in for any length of time is almost unbearable. But having a trapped stone as well...yikes! It doesn't sound like something that can wait weeks. Especially if you have delicate health.
Until my second bout with stones, I had never been to the ER for myself. My husband always picked the major trauma hospital for any of his problems and would be sitting for six hours waiting to be seen, so I made him drive me to the one that was twenty minutes away knowing that his ER wouldn't see me immediately unless I came in on a cart with a gunshot wound (we live in Memphis, TN and gunshot wounds aren't terribly uncommon here). He was expecting a long wait when we got to this other hospital, but I walked to the counter and told them I thought I was passing a kidney stone. I was in a room, in a bed with IV pain meds within five minutes. My husband was shocked by the speed of my care (I know where he will be going next time he has an emergency).
My area has probably seven or more major hospitals and I know of at least three major urology groups, not counting the private urologists. My first one ran a cattle call operation. They looked fancy and were in a higher end location, but they were moving patients in and out fast, making serious money. I had to pay a $30 specialist co-pay to see a doctor for 30 seconds that talked at me, told me what he was going to do and was gone before I could ask any questions. He didn't stick around to talk to me after placing my stent. I could hear him chatting with the techs during my lithotripsy, but he was out of there before I was removed from the table. The longest he ever stayed around was after my stent removal (via sedation) and that was 30 seconds to say everything looked okay. I found out through this whole process that the nursing staff had no respect for him, even though my GI doc referred me to him. He was notoriously late to everything, delaying staff from going home or holding up procedures and they told me people were lucky if he stuck around to talk to you afterward in anything more than a blur. Nursing staff is a good way to find out if your doctor is any good. When the ER visit happened, I mentioned to that nurse who my previous urologist was and she had an earful for me. Told me most nurses suspected he had a drinking problem.
After that ordeal, I became very proactive in my care. I have now had three separate bouts of kidney stones and foresee more in my future. Like I said in earlier post, my left kidney is shaped in a way that likes to trap sediment. I'm supposed to drink 150oz of water per day and it's really hard for me to do. My current urologist is considerably younger than my first (probably around my age - I'm 39) and it's a small world for such a large area, but it turns out he is also the husband of my OB/gyn (who I also love). The difference in care has been astounding.
Even with a stent placed by another doctor, you should be able to have a different urologist take care if it. Plus he will have access to your current records. Some people have gone to the ER to have stents removed, so I think they are pretty generic. But honestly, I hope your doctor doesn't fail you a second time and this is all resolved without needing to switch everything up.
And when your discharge notes say to see him on a stated date to get that stent removed, don't let his staff bully you into waiting longer (this happened at both urologist offices and both times I did the same thing). I changed the tone of my voice and said that I was reading my discharge papers and it clearly stated to see him this Thursday for stent removal, not next Thursday...not three weeks from now. This Thursday. And both times at both practices, they put me on hold and my urologists main nurses got on the line and made sure I was seen on the date my discharge notes gave. Pardon my language, but the stent is a nasty tube of misery causing plastic that I'm not letting stay inside me one day longer than necessary for a bulls**t "he is booked up for two weeks" excuse. They will find the time to pull that thing out. The first time was via unnecessary sedation, the second time was also embarrassing like Derek's experience...the doc and two nurses. He put in a camera tube that looked for the loop end of my stent, grasped it with a claw that came out of the camera tube and pulled it out in seconds. I didn't have any bleeding or clots afterward. I was all better. Less than five minutes to get it out from cleaning, numbing cream, removal to clean-up. They can fit you in.
Best wishes and all the luck you need to get this thing taken care of!
Assassin1999 Luna_Sea
Posted
Very interesting information Luna! 150 ounces is a lot of water to drink in a day. That's about 9-10 bottles i guess. I try to do 80 ounces a day and still fall short sometimes. And the truth is, I probably should aim for 120 ounces or more due to a physically demanding job. The only way I can do that is if I don't drink anything else at all. No coffee in the morning, no alcohol in the evening, just H2O. It's a good thing I don't live in Tennessee, because I am a whiskey connoisseur Yes, the stent is very miserable! The day I got mine removed also happened to be my nephew's 1st birthday. I felt bad for not calling(mostly to congratulate my niece who loves being a big sister), and my brother asked why I didn't (like what am I supposed to say to a 1 - year old over the phone anyway lol?). I simply told him that I had gotten 20 inches of tubing pulled out of my penis that day and didn't feel much like socializing. The worst aspect of the stent, for me, was the string they left hanging out of me in order to pull it out when needed. Planning ahead is a good thing, but the string itself is more like fishing line. When it twists or moves at all, the discomfort/pain is something in the same realm as when you whack your funny bone or accidentally bite your fork while eating. But, I suppose it's better than having to have another full on procedure just to remove it. I was explaining to my Dad one day during "stent week", about the logistics of it all, and he paused for a second....and with total sincerity asked me "Well, what happens to the string first thing in the morning?". At the time, I had no clue because it hadn't been an issue for weeks. But, the day before I got the stent removed, I got my answer and it's quite simple....some of the string disappeared! I hadn't even thought of that until he asked, but in case anyone wonders, it didn't cause any problems Sorry again for the TMI, but if I don't make jokes where I can, then it's all just a painful memory haha.
Barb1705 Luna_Sea
Posted
Hi Luna, I thank your for sharing your kidney stone experience with me. It's very interesting, and I don't know what the reason might be, but I've also found it difficult to deal with the people who work in the urologist's office. You said after the stent was removed, you didn't have any bleeding or clots. I'm really glad to hear that, but I was wondering, when the stent was in, did you have bleeding just about every time you would urinate? I ask that because that's what I have had, and I was told as long as I have the stent in, I will have bleeding. I'm having a bad day today, because I'm really upset - scared, because my 2nd surgery is scheduled for tomorrow. Hopefully he'll be able to get the stone out this time. I already know he's going to be putting another stent back in, but I was told this one is only going to stay in for a few days, and then he will take it out in his office.
Barb1705 Assassin1999
Posted
Hi Derek , Hi Luna, I'm finding the information about water, that both of you have mentioned, to be very interesting. Like I said before, I'm in my 70's, and I never had a kidney stone. I was always the type of person who drank a lot of water - never measured the amount, but I know it was at least 8 glasses a day, plus around 6 cups of decaf coffee, every day. Then, for some reason, about a year and a half ago - possibly 2 years, for some reason, I stopped drinking coffee, and cut down on the amount of water I drink. Have to wonder if that has anything to do with me getting a kidney stone?
Luna_Sea Barb1705
Posted
Barb, in response to your bleeding with the stent...I usually only bleed for the first day or two after placement. And urinating for those first two days is daunting. I have to give myself a pep talk because the pain is unlike anything I have ever experienced. The beginning doesn't hurt, but as the stream finishes there is this awful building pain in my kidney that is indescribable. Dreaded going to the bathroom until that resolved. But the doctors always tell me after stent placement that it's perfectly normal to bleed the entire time and to see clots. For some reason, I'm not a big bleeder. Even the ER visit misdiagnosed me because they didn't see blood in my urinalysis which the doctor looked for as a defining symptom of passing a stone.
Derek, I'm surprised they gave you a string. I think the reason they never give me a string is they suspect I will pull the sucker out prematurely due to how miserable it makes me. There are probably lots of people that do...especially if the doctor delays removal.
Barb, I think my problems also stem from a drop in fluid intake. I used to work outside (in Memphis heat) and would drink a gallon or two per day. Never had any problems. Now that I've changed careers (quit doggy daycare to become a licensed aesthetician) I'm in a comfortable and temperate environment and never feel thirsty anymore. At first I was told to aim for 100oz of water per day, but after he saw my kidney during the uretorscopy, he changed it to 150oz and recommended I hang my head and shoulders over the edge of my bed to help move any sediment resting in my left kidney to the exit which is higher up than in the average kidney. I struggle to drink 100oz and think I have only made it to 150oz one time since. There comes a point where I'm so sick of drinking water, I have to gag it down. And I love water. When I complained to my urologist about it, asking what I could do to make drinking so much water easier...he told me to think about my next kidney stone. Unfortunately that hasn't done much to boost consumption.
Barb, I feel optimistic for you. I hope your doctor sticks it out simply so he won't be embarrassed to tell you he failed again (he that is supposed to be so great). If all goes as it should, you will be on your way to feeling much better in less than a week. After all you have been through, don't let his staff delay your stent removal! If he says a couple days, make sure they fit you in. I wish they could appreciate what the patients are going through...I'm sure they wouldn't want to wait one minute longer than necessary if they had a stent.
Barb1705 Luna_Sea
Posted
Hi Luna, Oh, so you're a "doggy person" just like myself. I don't have one right now, but I did for many years. When I was in my 20's I had Saint Bernard's. Used to breed and show them. Also during the years I had an Irish Setter, a German Shepard, and an Akita. Then as I got older, I got smaller dogs. Had English Springer Spaniels for many years. And then I got a Lhasa Apso. She was 8 weeks old when I got her, and she lived until she was almost 17. I really miss her, because we went thru so much together, and she was always there for me.
Okay, now back to kidney stones! I've just been walking around my apartment crying today, because I'm scared about surgery tomorrow. I can't help it, I'm a big baby when there's something wrong with me. I have to be at the hospital at 6:30 A.M. and surgery will be at 8. I'm going to take your advice, and do my best not to let the office staff delay the stent removal.