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.