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Light at the end of the tunnel - 6/25/2012 11:18:51 PM   
LafayetteLady


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So I finally have a date for the kidney stone removal!  I backed out of the University Clinic when everytime I had a question or concern, they just weren't available.  I spoke to them about prescribing something for the pain and urethra spasms from the stent since I had been to the ER over it several times, and their response was they weren't going to do anything and to deal with it until their scheduled surgery on July 19th (this was last week on June 20th).  The fact that they were unconcerned about me being in excruciating pain for a month really pissed me off.

Then I start thinking how the clinic was so far away and if I had any problems after the surgery (not that any are expected, but still), they are completely unavailable after hours, no doctor on call.  So I would have to go to my local ER, who of course had no record of the procedure and wouldn't really want to get involved.

I spoke to my wonderful previous urologist who put the stent in and said he would work something out financially and explained the situation.  His office called today and I am scheduled for surgery next Monday, July 2nd.

He knows that I don't do well with stents (since he has taken care of all past stones), prescribed both painkillers and diazapam in the hopes it would stop the spasms (they were literally making me scream in pain).  The diazapam worked wonders, thank God!

So now I only have to tolerate the stent for another 10 days, because he agreed to remove it 3 days after the surgery.  I'm finally getting decent medical care from a wonderful doctor and I don't know what the cost would normally be for him to do this procedure, but it is only going to cost me $500 bucks.  I have charity care at the local hospital so that is all taken care of.

Part of me thought I should post this in P&R because it is a statement on the shitty healthcare available to people without decent insurance, but decided to post it here as an update to my previous thread on the issue.

Oh, and while back then there were only 3 stones, now there are about 8!
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RE: Light at the end of the tunnel - 6/26/2012 2:39:19 AM   
kitkat105


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I'm so glad this is finally being resolved. And it is really lovely to hear you have a found a doctor who actually obviously still enjoys his job and does it to make people better! What a novel idea!

Do they know what kind of kidney stones you have? I know certain kinds are recurrent, but even with my limited urology experience I can't remember if there is a way of preventing or reducing their recurrence.

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RE: Light at the end of the tunnel - 6/26/2012 6:36:18 AM   
SassySarijane


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Very glad to hear you've found a decent, caring doctor and better quality of care and that you'll soon have this resolved :)

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RE: Light at the end of the tunnel - 6/26/2012 9:20:13 AM   
DomMeinCT


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Thank goodness you have a closer date/light at the end of the tunnel.
That doctor is a gem.

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RE: Light at the end of the tunnel - 6/26/2012 11:51:55 AM   
LadyHibiscus


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So glad to hear this!

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RE: Light at the end of the tunnel - 6/26/2012 4:59:34 PM   
hausboy


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hey Lafayette Lady
glad to hear you're getting better care--I remember when you were first in the hospital with poss. kidney failure--glad that you're almost to the other side of this and won't have any more pain!

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RE: Light at the end of the tunnel - 6/26/2012 7:39:59 PM   
LafayetteLady


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Thanks to all for the well wishes.  Yes, this doctor is one of a kind (and good looking to boot, lol).

Kit:  The stones are likely calcium based, and yes I do believe there is treatment to keep them from coming back.  Treatment probably wasn't an issue in the past because they were growing so rapidly as they are now.  At present, I am working with this wonderful urologist and an endocrinologist to try to uncover the cause.  As soon as the stones are removed and peeing isn't hell, I have the glorious task of peeing in a bottle for 24 hours.  Also while my thyroid has been tested often, it seems my parathyroid hadn't.  Now it has.

hausboy:  Well, I won't have the kidney pain anymore, lol.  I will just have the back and neck pain and the fibro pain, but one less pain is good enough for me!

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RE: Light at the end of the tunnel - 6/26/2012 9:22:12 PM   
MistressDarkArt


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This is great news, LL. You were smart to listen to your gut about the other clinic, especially the part about not having anyone available for follow-up. Stuff can and does happen; I can vouch for that. Last summer I had a hemorrhagic cyst removed...was supposed to be a day surgery, in and out, easy squeezy. I bled out in the recovery room after when I got up to pee and the whole thing turned into another emergency surgery to ligate the bleeders and an overnight hospital stay.

Good luck to you. Wishing you comfort, relief, and healing!

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RE: Light at the end of the tunnel - 6/26/2012 9:42:30 PM   
LafayetteLady


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Thanks MDA:

Considering all the problems I have had just with the stent (which was supposed to make me feel better), I know there would be issues.  Hell, I even had to remind the doctor I love that previous stents always had to be removed early because of problems.  He immediately opened the chart and was like, "oh yea."  I don't expect him to remember everything about the two previous treatments (one was in 2000 after all), but he has the information that shows what did happen.  So surgery on Monday and he promised the stent would come out three days later.  I swear that damn stent is worse than the stones.  OMG, the urethra spasms it causes!  Pyridium, the normal treatment couldn't touch it.  Thankfully, valium is taking care of it just fine. 

Only bad part?  I can't pick up my granddaughter unless I'm sitting down.  I'm just not steady enough.  Thankfully she is running over and giving me hugs and kisses without me picking her up.  Talk about good medicine!

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RE: Light at the end of the tunnel - 6/27/2012 6:29:09 AM   
kitkat105


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I hope you can get some answers.. I'm sure the urologist will send the stones to pathology.

I have plenty of good thoughts going your way!

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RE: Light at the end of the tunnel - 6/27/2012 7:22:50 AM   
Rule


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I wish you good luck.

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RE: Light at the end of the tunnel - 6/27/2012 8:35:55 AM   
kalikshama


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RE: Light at the end of the tunnel - 6/27/2012 3:04:23 PM   
areallivehuman


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If I may ask, what treatment will you be getting? I had the sound wave blaster done 6 or so years back, and my mother just underwent a (I think) nephrostomy, surgical break up and removal of the stones, she had to go a couple weeks with a bag hooked to her back. Any questions about either procedure, fire away....

As I understand kidney stones, they are the filtered sludge/residue that accumulate in the kidney, it's when they dry out and break off into "stones" that they cause problems. Hydration is huge....my mothers doctor actually pointed his finger at diet soda.... said it dehydrates you.

Hope it goes well.....

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RE: Light at the end of the tunnel - 6/27/2012 3:53:49 PM   
LafayetteLady


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quote:

ORIGINAL: areallivehuman

If I may ask, what treatment will you be getting? I had the sound wave blaster done 6 or so years back, and my mother just underwent a (I think) nephrostomy, surgical break up and removal of the stones, she had to go a couple weeks with a bag hooked to her back. Any questions about either procedure, fire away....

As I understand kidney stones, they are the filtered sludge/residue that accumulate in the kidney, it's when they dry out and break off into "stones" that they cause problems. Hydration is huge....my mothers doctor actually pointed his finger at diet soda.... said it dehydrates you.

Hope it goes well.....


No shock wave and they won't be doing invasive surgery.  There may need to be more than one procedure done though.

Stones are not "sludge/residue" typically.  Most stones are the results of too much calcium which crystalizes in the kidney.  Then other little pieces "find" each other and become the kind of stones that cause pain.

I've gone through the procedure twice before, so I'm not the least worried.  As I have mentioned, I have a really wonderful doctor who should be teaching bedside manner to every doctor on the planet, as well as being a highly respected professional in his field, with a practice that uses all the latest techniques.

At the moment, everything is scheduled and moving forward according to plan.

I do appreciate your offer, but again, as this isn't my first go around with the hateful things, along with having healthy problems known for causing stones, I'm pretty up to date.

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RE: Light at the end of the tunnel - 6/27/2012 7:58:32 PM   
peppermint


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How wonderful that you were able to figure out a way that works out so well for you.

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UPDATE RE: Light at the end of the tunnel - 7/4/2012 3:33:28 PM   
LafayetteLady


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So I had the first procedure on Monday, which resulted in just one kidney stone being removed.  Apparently, when the first stent was put in, it pushed the other two stones in my ureter back into my kidney, which is kind of a good thing.

Running the IV line was more than the usual hassle.  I explained about the anxiety attacks that can be caused if they try to go anywhere but my hand, yet the nurse AND the lab tech both made a mess of things, and I finally had to have the anethesiologist start the line. 

It didn't help that I finished all the pain meds and muscle relaxers the day before and the pain I was in by the time I got to the hospital was horrible.  I think I asked them several times to just hit me in the head with a hammer and knock me out, lol.

Anyway, the original stent was replaced and was the primary cause of the pain.  It was completely corroded and deteriorating, as though my body was attacking it.  Now there is a shiny new one in place.

The doctor has told me that now I have to make a decision, which is causing me a bit of a problem.  If I want, he will remove the stent tomorrow, but then I have the not so slim risk of the large stones still in my kidney deciding they want to "make a break for it" and try to enter my ureter.  Or the stent stays in place, which will prevent that from happening.  Either way, we now move on to shock wave treatment for the rest.  The doctor said that it will take at least two weeks to get the first shock treatment scheduled (and I will likely need more than one).

Since the surgery on Monday, I haven't had to endure any bad spasms in my urethra, but the pain in my kidney from the stent has been really pretty severe.  Moving around has been really difficult, and I've had to resort to sleeping on the couch because the idea of having to walk down the stairs from my bedroom is just too much.  Actually, I'm not really able to do much of anything.  Even the concept of making myself something to eat is something I know will cause pain.

My first thought was that as long as the doctor keeps me in pain meds and muscle relaxers, I could possibly bear the stent.  The doctor isn't too keen on the meds, even though I am almost zero risk for addiction (I have been on long term pain management in the past and never had any issues with addiction).

The thing is though, that this stent is going to corrode and deteriorate just like the first one if left in for a month (or longer), which will result in excruciating pain (almost worse than kidney stone attacks really).  I had thought of leaving it in for now, and when it starts to be a huge problem, having it removed, even with the risk of the other stones traveling.

However, with the pain this stent is already causing (and I am considering some of the pain may be due to the surgery itself), I don't know that I can leave it there without losing my mind.

The doctor has left the decision entirely up to me because he knows how bad the stents cause me pain.  Certainly, I'm going to discuss it with him tomorrow and go over all the options, but in the meantime, I thought perhaps y'all could give me some thoughts/opinions on the matter.

Stent stays in, I can't do much of anything.  Stent comes out, stones may travel.  Stent stays in, my body will essentially attack it and make me miserable.  I'm really at a loss here trying to weigh the pros and cons, so any thoughts would be really appreciated.

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RE: UPDATE RE: Light at the end of the tunnel - 7/4/2012 3:46:50 PM   
LadyHibiscus


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I am trying to wrap my head around something causing worse pain than a kidney stone attack. Why are they not just removing the stones outright? Is that not done anymore?

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RE: UPDATE RE: Light at the end of the tunnel - 7/4/2012 11:00:30 PM   
ashjor911


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i have had one removed before...& i think you are in better hands than i was

get better soon will ya

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RE: UPDATE RE: Light at the end of the tunnel - 7/4/2012 11:33:31 PM   
LafayetteLady


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The remaining stones are up in my kidney where they can't be reached with the scope, which is why they can't simply be removed.

There are two procedures which are invasive, where they make either a small incision in the back or a larger incision in the belly to remove stones directly from the kidney.  Both require hospital stays, and are apparently only done for stones larger than 2cm.

I think the reason the stent bothers me more than the stones is because based on what I saw in the pictures the doctor showed me, my body seriously attacked the stent, causing severe deterioration and corrosion.

I realize that most people would want to avoid the invasive procedures at all costs, but for me, I just view it that while I would be cut open and be stuck in the hospital for a week, with like a six week recovery after, the stones would be gone.  I'm just one of those people who want the procedure that works the fastest and ends my pain as soon as possible.  Apparently, even with the shock wave therapy, it can take up to 3 months to be stone free, which now that we are in July puts the end of things dangerously close to my European trip, which doesn't make me happy at all.

Honestly, at this point, the doctor is going to be very unhappy about how much pain meds I had to take over the last two days to keep the pain under control, and I can't possibly think of keeping the stent in any longer.  I'm thinking at this point, if the remaining stones travel, I can fight for the invasive procedure just to get it done and over with.

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RE: UPDATE RE: Light at the end of the tunnel - 7/4/2012 11:34:48 PM   
LafayetteLady


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Yes, my doctor is great, and believe me, I want this over so bad.  I have other health problems that cause regular pain, so just getting rid of one nagging pain would be a relief.

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