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Old 08-23-2005, 07:45 AM   #1
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friendly_one HB User
newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Date 8/23/05 Hi everybody I'm new to this board and I look forward to talking with ya. (I'm not a newbie anymore since I first posted this thread). LOL

Here's my story.......I'm a 35 yr. old woman with primary hyperparathyroidism (basically, my body overproduces too much calcium), kidney stone disease, chronic pain (in kidney), and osteopenia (loosing bone mass from lumbar spine, total hip, and radial arm due to the kidney stone disease.) I was Dx with kidney stones when I was 9 yrs. old. I have had over 400+ kidney stones (that's not a typo, I wish it was). Here's a list of my surgeries:

40+ ESWL (Extracorporeal Shockwave Lithotripsy) - this is where the stones are broken up in to small pieces so you can urinate them out). ESWL has damaged my kidney so much, I'm now in pain management. I will NEVER HAVE another ESWL again. I have recently been given a new Dx to add to the list...the docs call it chronic lithotripsy induced nephritis.

7 major open surgeries for kidney stone removal (some stones were bigger than a quarter).

PCNL (Percutaneous nephrolithotomy) - this is where they make a small incision in your back next to the kidney and "tunnel" down into the kidney to remove the stone that way). You can only have a PCNL done a few times. Each time they "tunnel" into the kidney, kidney tissue is obviously damaged. You have a tube in your kidney that comes out of your back called a nephrostomy tube. It drains your kidney and hurts like hell everytime you move! In my opinion, this surgery is WORSE than being cut open! Average hospitalization time is 3-5 days (that's if everything goes right...no infection, no fever, etc.) I was in the hospital for 7 days (of course, I had an infection and fever).

50+ Ureteroscopies (this is where they scope the ureter all the way up to the kidney).

40+ Cystoscopies (this is where they scope the inside of the bladder).

Parathyroidectomy (they removed 3 1/2 glands - most people have 4 glands, they are located in your neck - 2 glands sit on the top of your thyroid, the other 2 are located on the bottom of your thyroid).
your parathyroids regulate the calcium in your system. My stones are calcium based.

Radical nephrectomy (they removed the whole kidney recently...see update below)

All of these surgeries (except for the parathyroid removal) have landed me in Pain Management because I'm in EXCRUCIATING PAIN EVERYDAY OF MY LIFE! I have to take extremely potent pain meds daily (Fentanyl....Fentanyl is 100 times stronger than Morphine, and Fentanyl is currently the strongest, most potent pain medication available at this time...there is nothing left after Fentanyl) in order to live my life (if that's what you want to call it, this is not living)!

Update 11/2/05...I'm about to have that screwed up kidney removed. Hopefully, that will take care of the pain problems. If not, a morphine or fentanyl pump will be implanted into my spine. Yea, fun, fun.

Update 2/14/06...I'm scheduled for surgery in April. I'm having that jacked up kidney totally removed.

Update 4/12/06....I had my kidney removed a few days ago. Hopefully, things will get better. I still have stones in my remaining kidney. I just hope now that everything is being diverted to my remaining kidney that I don't "mass produce" stones in that one.

Update 4/5/07....Well, it's been one year since my radical nephrectomy and I'm "mass producing stones" in my only kidney. My bloodwork indicateds that the kidney is failing (one year sooner than predicted). I will NOT go on dialysis or be listed for transplant. The sooner this hellhole of chronic, severe pain ends, the better.

I hope everyone is ok!!!

Anyway, I look forward to speaking with ya. Feel free to ask me any questions about kidney stones or surgeries for stones.

Take Care

Last edited by friendly_one; 07-25-2007 at 07:50 PM.

 
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Old 08-23-2005, 08:54 AM   #2
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Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Hi, i have had 15 kidney stones in the last 2 years so ya i know how you feel. Do you drink lots of water? I think that is where my problem lies i don't drink much water at all.

 
Old 08-23-2005, 11:09 AM   #3
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friendly_one HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

pamela20....I try to drink as much water as I can, but I hate water. I also drink sugar-free Kool - Aid, and sugar-free carbonated juice drinks. The more Fluid the better, just make sure it is the right type fluid for your stones. I can't drink soda, coffee, or tea. I'll make more stones by drinking that type of fluid.

Take Care

 
Old 08-23-2005, 11:36 AM   #4
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Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

I just had 6 stones removed in June, how long do you think before more will return?

 
Old 08-23-2005, 01:34 PM   #5
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friendly_one HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Pamela20,

It just depends on how fast your body makes them. My body makes them at an oustanding rate. For example, my last surgery the Dr. told me he removed 15 stones, two weeks later, I was CT'd and I had at least 30 more new stones in that kidney. When the Dr. remvoed the 15 stones from surgery, he said the kidney was clean. I have a crazy minereal metabolism. My stones are made from Calcium Oxlate. Right now, both kidneys are full of stones. FUN, FUN! Keep drinking at LEAST 4 Quarts of liquid a day to keep your kidneys flushed. I know you don't like water, but try sugar-free Kool -Aid, Crystal Light, or Club Soda with lots of lemons (Sweet and Low if you like) it will be just like drinking Lemonade! Just don't drink coffee or tea (brewed tea). And don't drink anything that will dehydrate you (sugary colas and Alcohol). Those are extremely bad for people with kidney stones.


Well,
Take Care

P.S. Do you take any meds for your stones?

Last edited by friendly_one; 08-23-2005 at 01:43 PM.

 
Old 08-23-2005, 05:33 PM   #6
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Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

I've also had kidney stones since I was 9 years old, and seem to have them every two to three years... I'm scared about next time, because I don't want to pass it naturally, but I also don't want to have lithotripsy or any other kind of surgery either... Kidney stones suck :P
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Old 08-23-2005, 06:27 PM   #7
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onekidney HB User
Lightbulb Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Hi:

Ask your doctor about urocit-k. this is potassium citrate at prescription strength. Citrates help keep your kidneys stone free by helping you excrete citrates in your urine. Potassium helps balance your salt intake by controlling the amount of calcium you lose. This helps your bones. For more information, go to Pub Med and look up hypocitraturia, parahypothyroidism, or recurrent stone formation.

Take care

 
Old 08-23-2005, 06:56 PM   #8
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Pamela20 HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

No, i don't take any meds for my stones mine are calcium oxlate also. Do you always get yours removed when they find them in your kidney?

 
Old 08-26-2005, 10:39 AM   #9
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friendly_one HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Hi onekidney,

Yes, I've tried all kinds of thiazide diuretics, Allopurinol, and Urocit-k (I was involved in the original research of Urocit-k in the early 80's when I was a child). Nothing helps. They say I'm the the 1% case they can't crack.

Take care

 
Old 08-26-2005, 10:52 AM   #10
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Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

I have had many KIDNEY STONES since I was 18 yrs old the first and worst.
When I get them now I know I start to get a nagging sensation in my side for weeks. Sometime blood in my urine, and I know when it is in the bladder. Because I have the urge to urinate all the time and I get this creepy crawly feeling in my urethra. Then I usually hear a clink at the bottom of the toilet.
I saved all of mine could make a neckless or something. I have heard of this drug you might ask your Doc about it,Ask your Doctor about Lithonal,contains the necessary ingredients to get to the source of your kidney stones to dissolve them and help them pass quickly and smoothly, and to prevent them from reoccurring.

 
Old 08-26-2005, 11:28 AM   #11
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French horn HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

lharmon37,

Is this one of the two drugs that Urologists can prescribe to desolve the stone when your stones are made out of the Acid type stones? (Sorry for my ignorance here. Mine are made up of calcium oxalate.) Or will this (Lithonal) work on Calcium Oxalate stones? Thank you in advance.

 
Old 08-26-2005, 12:21 PM   #12
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Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Quote:
Originally Posted by French horn
lharmon37,

Is this one of the two drugs that Urologists can prescribe to desolve the stone when your stones are made out of the Acid type stones? (Sorry for my ignorance here. Mine are made up of calcium oxalate.) Or will this (Lithonalwork on Calcium Oxalate stones? Thank you in advance.

I don't believe you even need a Doctors presciption for this it is a all natural pill.

Last edited by Administrator; 10-20-2007 at 03:34 PM.

 
Old 08-26-2005, 02:41 PM   #13
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sunbird_owner HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Thank you kstone,

will let the stone pass naturally.

Jay

 
Old 08-26-2005, 02:43 PM   #14
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French horn HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Thank you, lharmon37!!! I will investagate this further.

 
Old 08-27-2005, 12:22 PM   #15
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French horn HB User
Re: newbie here ---but EXTREMELY FAMILIAR WITH KIDNEY STONES

Iharmon37,

I have investigated them further and they have some better business bureau things going on with them. Do you have any idea what that is all about? I'm not saying that that the product isn't good I would just like my curiosity satisfied on this.

I would also like to know if you take this as maintenance as well as an existing kidney stone buster/dissolver/pain reducer? Thank you.

 
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