Well ... Looks Like My Surgery Was a Big, Painful Failure

[REP]

Back in May, I had a cystoscopy/left ureteroscopy with Holmium laser and ureteral stent placement to remove a stone deeeeeeeep in my left (duh) kidney that was thought to be causing chronic multiple-antibiotic-resistant kidney infections. The chronic infections have caused a lot of scarring, which on their own can cause the kidneys to fail. Mine are already failing, so stopping the infections is pretty important.

The surgery was awful - I wasn't given any pain medicine afterwards, despite the surgeon promising me during the consult that I'd be sent home with something stronger than Vicodin (kidney infections are more painful than stones - and I pass stones every month anyway, too - so I already take Vicodin for kidney pain). And, despite consulting with anesthesia, I woke up in recovery without my CPAP on ... gee, wonder why my O2 sat was sucky in recovery? The pre-op pain was so bad I had to be taken to the ER later that day and given a lot of morphine. I could barely move for about a week; I got very bad thrush from the IV and oral antibiotics; the stent felt like a length of barbed wire that ripped my kidney every time it spasmed - which it did quite often, since there was a stent in it. Bad, bad recovery, but worth it, right, because I wasn't going to be having more kidney infections. Right?

Well, no, I had one four weeks post-op. It was classified as a post-op infection, and hell, my immune system is shot to hell and I've had nosocomial infections after every other surgery I've had, so why not. Except this cultured to one of the same damn organisms with the same resistances I've been fighting for over a year - unlikely to nosocomial. Then I was told I was passing a fragment of the stone that was lasered, and that's why I had an infection.

One problem ... the stone I passed was a) a different size than the one that was lasered and b) it was INTACT. A perfect specimen of a jackstone. Not lasered. Not broken.

Last week my fever (I alwasy have a fever for some reason) got higher, and it felt (and still feels) like something is broken inside. Oh-oh. Started using the specimen collector, and guess what? Today my dipstick - the exact same kind they use at the lab - is leukocytes ++, positive nitrites, and trace RBC (along with the usual and expected abnormalities). Another kidney infection, goddamn it all to fucking hell. Good thing I had that surgery!

[ProfessorGAC]

1. Wow! That's A Drag!

Never had the experience of having anything like that done and later having it not worth it. That's a real shame.

Hope you can figure out a way to continue to muddle through. Of course, you can always come here to this group and complain. We're all here for you.
The Professor

[REP]

3. My Other Surgeries Were Totally Worth It

Then again, my other surgeries were a tual ligation and an endometrial ablation. Both had complications (including a badly bruised small intestine - kids, don't try this at home) but they were both completely successful.

[ProfessorGAC]

5. I've Only Had Two, Ever

One to remove tonsils, but i was 3 and don't remember it very well. Just bits and pieces of the experience.

The other one was to remove 3 impacted wisdom teeth. For a couple of days, i was thinking "Man, this is way worse.", but after a week, i was most gratified.

My BIL had a surgery to implant a nerve stimulator to control epilepsy. That didn't work out to well either. Did throat damage (permanent) when the leads wrapped around his vocal cords. Then, he didn't like the way the thing worked when they finally got it activated. So, they removed it. Useless surgery there. I'm sure he can empathize with you.

Take care.
The Professor

[REP]

7. I've Had Many

Lots, if you count teeth: all four wisdom teeth extracted at once (all with bony impaction and jaw had to be fractured); two molars and one premolar extracted (not all at once, though I did have a three-root root canal and a molar extracted on the same day - BAD idea); exploratory laproscopy (during which my I "died" and had to be resusciatated); hand/plastic surgery to reattach two nerves in my thumb after nearly severing it in a fan; colposcopy and LEEP for cervical cancer; tubal ligation; endometrial ablation; kidney biopsy and the URS I had in May. I'm done, thankyouerymuch!

[ProfessorGAC]

9. They Had To Dislocate My Jaw

No breakage, but had to unhinge it so they could get their hands in there far enough to cut that stupid tooth out.

Wow! I'm fairly lucky with surgical needs, compared to what you've been through.
The Professor

[fudge stripe cookays]

2. Ouch!

I'm so sorry RFP.

I don't know much about kidney problems, never having been there, but it sounds like you are really in a lot of pain, and I feel for you.

I hope soemthing can be done to relieve your infections and help you to begin recovering. This does not sound good at all.

Have you checked into a different doctor? It doesn't really sound like you're getting the care or especially the pain relief that you need! Perhaps a better, more empathetic doc would help? Have anyone you can hit up for advice in this area?

Please don't get discouraged, and come here if you need to gripe.
FSC :hi:

[REP]

4. My Urologist Is The Head of The Department

He also has the most experience with complicated cases like mine. Sigh.

My internist, on the other hand, is absolutely wonderful and he makes sure my pain is well-controlled.

[mopinko]

6. pain meds and fibro

i have been reading up on fibro, as the whole subject is pretty new to me. i saw an article that said that any fibro patient that has surgery needs special care from the anesthesiologist. this includes direct application of antinflammitories to the surgical site.
paradoxical reactions to pain meds, in my case, anyway, are one of the most damaging parts of this disorder.
more and more of what i am reading about fibro leads me to believe that current understanding suffers from a chicken/egg misunderstanding. imho, it is the destruction of sleep that is causing autoimmune diseases, and other breakdown in immunity. the change in my body since i fixed my sleep is nothing short of miraculous. only time will tell if my lupus will remit, but i am betting it will. we'll just have to wait and see.

[REP]

8. I Can't Take NSAIDs

NSAIDs are nephrotoxic, and since I'm nephrotic and in early kidney failure, they're super off-limits. Which really sucks, since I have an inflammatory arthritis in addition to everything else and there's times I'd kill for a fucking Advil!

I have some paradoxical reactions to opiate painkillers, but only that they keep me awake instead of making me sleepy as they do nearly everyone else on the planet. I have rare paradoxical reactions to actual sedative/anesthestic agents, such as Versed. The true paradoxical reaction is so rare that almost none of the anesthesiologist who have worked on me have ever seen it and thought they just weren't giving me enough, but nope - the reason I was awake, alert and jittery was because it wakes me up, keeps me up and does not cause any sort of amnesia in me at all. This means I've had some really painful things done to me while I was wide awake, including punch-biopsies of my kidneys, which not only involves the abovementioned punch-biopsies, but an incision in the skin and some fishing around to make sure they're not hitting the renal artery. Fun!

As for sleep - amen to that! They can have my CPAP when they pry it off my cold, dead nose! I still feel like kicking the crap out of that doctor who told me I was "too young, too thin and too female" to have sleep apnea. I sure don't miss blacking out randomly at all.

[mopinko]

10. sounds like you need a personal anethesiologist

if i were you, i would not let anyone near me with a sharp object until they find something that works for you. jesus.
re- sleep, i am jokingly explaining that jesus healed me. i feel so amazingly good now that i have ironed out my and my husbands sleep. people seem to find jesus a more palatable explanation than sleep. i think those people need a nap.
seriously, tho, i am very curious about the role of sleep in autoimmune disease. i think when it is finally really understood, sleep will turn out to be a major factor.

[Sgent]

11. I would request/require

A MD anesthesiologist, rather than a nurse anethestist, in the future. I know this offends some CRNA's, but with your complications and wierd reactions, I personnally would want the most knowledgable person being my doctor in this situation.

Talk to your urologist, or ask for a consult from one in another group about your problems. Just because he's the most experienced, doesn't mean he hasn't missed something. He should be supportive of getting a second mind to look at your problems.

Finally, talk to your internist about using an oral steriod as needed for your arthritis -- at least when its very severe. There maybe other problems, but you should at least consider it. Oral steroids (or injected ones for that matter) are to advil as tylonel is to MS Contin. The steriods also help with the swelling, which the Vicoden doesn't.

[REP]

13. I'm Diabetic - No Steroids

I'm diabetic, so steroids are not a god idea; in fact, I only take them if my asthma is very, very bad and hen only for 5 days. In fact, I became diabetic after a massive course of steroids for asthma (I got checked regularly due to extensive family history of T1 and T2 on both sides of my family, and I was always ded normal until then). I know acetopminophen and hdsrocodone aren't anti-inflammatories; that's why I can take them.

Because of my severe sleep apnea, I always have a real gass passer (MD) not a nurse these days. After the kidney biopsy, they believed me about the paradoxical reaction to Versed and I don't get it - which makes recovery after surgery more restful!

I'm under the care of a nephrologist, urologist and the world's best internist. The urologist - I agree: just sending me for another CT and not returning phone calls when I call two report two kidney infections and a stone after my stone surgery just isn't cool. It could be a problem with his staff (it's been known to happen) but at this point, I'm beginning to not care who's problem it is, just as long as it isn't mine.

[blondeatlast]

12. Oh, jeez. I'll echo the others, get an MD to handle the anesthesia.

I wish I could offer some wisdom, but that I don't have. But you know I've got this for you :hug:

I wish I could offer it in person.