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Old 09-23-2009, 07:52 PM   #1
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Join Date: Jun 2007
Location: maryland, usa
Posts: 76
nikkiisshort HB User
Angry In Desperate Need For Help

Hello everyone!

I realize that there are probably a ton of posts about this, but I need some personalized advice. I'm grasping for straws here

Ever since I was 16, I've been having issues with kidney stones and UTIs (usually pyelonephritis). I went a few years without any kidney stones (which was wonderful!) until last year (2008) I started having that unmistakable stone pain. I ended up having 2 stones, one in each kidney (my stones have almost always been in the left kidney/ureter) and had Lithotripsy (ESLW) and ureteroscopy with 2 stents placed. I had a bad reaction to the stents and ended up having kidney and ureter spasms (WORST pain I've ever been in! It made the stone pain seem like a simple headache!). After last summer, I went the rest of the year without any stones or any major kidney pain (I still got the UTIs).

Unfortunately, my time without having pain was too short. As I said before, I get UTIs all the time, so when I have any symptoms that could indicate an infection, I see the doctor right away to have it treated. This past April, I developed symptoms of an infection and decided to see the doctor about 2 days later. Over those 2 days, my symptoms got exponentially worse. Due to the rapid progress of my symptoms, my doctor decided to be aggressive and treat me with a strong dose of Cipro (I'd been on Cipro before and never had a negative reaction). Unfortunately, the Cipro didn't help me over the next couple of days. My symptoms continued to get worse, so I decided to go see my Urologist. While at my Urologist's office, I collapsed in his office and was admitted to the ER for Acute Renal Failure. I'd never had (or was aware of) kidney failure and was really worried. My creatinine levels went from 0.6 to 1.8 and my functioning level was about 50%.

The next 4-5 months were horrible. I was in a lot of pain. nothing got rid of the pain! I even went on a Fentanyl patch to help maintain it and that still didn't work by itself (I had to take hydrocodone along with the Fentanyl). I've had an infection every month (excepting for August) since my problem in April.

My pain is so far manageable, but the frequent infections concern me more than the pain. They have no idea why I keep getting them and what caused my kidneys to fail in the first place.

I guess my question is this: Has anyone ever had this problem? If so, how did you deal with it/handle it/fix it? Does anyone have any insight on what could be causing this problem? Neither my urologist or nephrologist can figure what's going on.

I'm only 22 (closer to 23) and I'm tired of having problems with my kidneys that people much older than me usually get. Any feedback is welcome!

Thank you for taking the time to read this!

 
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Old 09-23-2009, 09:25 PM   #2
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Join Date: Sep 2009
Location: chicopee,ma
Posts: 4
bear1ne HB User
Re: In Desperate Need For Help

Quote:
Originally Posted by nikkiisshort View Post
Hello everyone!

I realize that there are probably a ton of posts about this, but I need some personalized advice. I'm grasping for straws here

Ever since I was 16, I've been having issues with kidney stones and UTIs (usually pyelonephritis). I went a few years without any kidney stones (which was wonderful!) until last year (2008) I started having that unmistakable stone pain. I ended up having 2 stones, one in each kidney (my stones have almost always been in the left kidney/ureter) and had Lithotripsy (ESLW) and ureteroscopy with 2 stents placed. I had a bad reaction to the stents and ended up having kidney and ureter spasms (WORST pain I've ever been in! It made the stone pain seem like a simple headache!). After last summer, I went the rest of the year without any stones or any major kidney pain (I still got the UTIs).

Unfortunately, my time without having pain was too short. As I said before, I get UTIs all the time, so when I have any symptoms that could indicate an infection, I see the doctor right away to have it treated. This past April, I developed symptoms of an infection and decided to see the doctor about 2 days later. Over those 2 days, my symptoms got exponentially worse. Due to the rapid progress of my symptoms, my doctor decided to be aggressive and treat me with a strong dose of Cipro (I'd been on Cipro before and never had a negative reaction). Unfortunately, the Cipro didn't help me over the next couple of days. My symptoms continued to get worse, so I decided to go see my Urologist. While at my Urologist's office, I collapsed in his office and was admitted to the ER for Acute Renal Failure. I'd never had (or was aware of) kidney failure and was really worried. My creatinine levels went from 0.6 to 1.8 and my functioning level was about 50%.

The next 4-5 months were horrible. I was in a lot of pain. nothing got rid of the pain! I even went on a Fentanyl patch to help maintain it and that still didn't work by itself (I had to take hydrocodone along with the Fentanyl). I've had an infection every month (excepting for August) since my problem in April.

My pain is so far manageable, but the frequent infections concern me more than the pain. They have no idea why I keep getting them and what caused my kidneys to fail in the first place.

I guess my question is this: Has anyone ever had this problem? If so, how did you deal with it/handle it/fix it? Does anyone have any insight on what could be causing this problem? Neither my urologist or nephrologist can figure what's going on.

I'm only 22 (closer to 23) and I'm tired of having problems with my kidneys that people much older than me usually get. Any feedback is welcome!

Thank you for taking the time to read this!
hi
sorry to hear about you troubles.i have had a transplant 12 yrs now.before that i would have uti's ans stones to....to help with the uti's try drinking 4oz
of diet cranberry juice 4 to 5 times a day.as far as the stones go stick to the kidney stone diet plan...hopes this helps..it worked pretty good for me

 
Old 09-24-2009, 06:56 AM   #3
Member
(female)
 
Join Date: Jun 2007
Location: maryland, usa
Posts: 76
nikkiisshort HB User
Re: In Desperate Need For Help

Hey bear1ne!

Thank you so much for your reply! I really do appreciate it!

I used to drink cranberry juice all the time until my kidney failed in april and was told not to drink cranberry juice anymore (apparently it can cause stones ??). I've also changed my diet to drink at least 2L of water per day, no more than 2gs of sodium, and a low oxalate diet. Also, to try not to eat a whole lot of red meat to keep my creatinine levels down.

I'm so scared that I'm going to need a new kidney! I wish I knew how to stop this/be healthy again!

How long after you started having all those problems with your kidneys did they decide to give you a transplant (if you don't mind me asking, of course)? Thanks for your help! It does help knowing that I'm not the only one who's had this problem.

 
Old 09-24-2009, 05:57 PM   #4
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Join Date: Sep 2009
Location: chicopee,ma
Posts: 4
bear1ne HB User
Re: In Desperate Need For Help

hi
i have polycstic kidney disease. which means cysts grow on and in your kidney.they reached a point where i looked like i was pregnant.i felt ill all the time due to them being large and rearranging my stomach,intestines.i was on epo for 2 yrs which helped a little.finally my kidneys where removed,one weighed
23lbs and the other 13lbs....i was on dialysis 1 yr..i received kidney from my youngest brother....12 years later kidney is going strong,but having pain and other problems caused by kidney medication.
you can also try taking daily vitamin c that is suppose to help with infections. staying on low sodium diet and maintaining fluid intake which you are doing definetly helps.also have you seen a dietician.. exercise as much as possible.....over the years i have noticed the effect excercise has had on my well being....the more i do it the less medication i need...which in turn help keeps the side effects to a minimum.
you did not say if your kidneys are still functioning enough or your on dialysis.
any way sorry that someone as young as yourself has to deal with this at such an early age.my disease is heraditary an has struck 10 of us so far....stay strong
excercise as much as possible..keep doing what you can to educate yourself about your condition...remember doctors are very busy now a days and don't always have the answer....and know one knows there body like the person in it.
yes there are a lot of us out here who may not have same issue but similar....so you are not alone.....with my current problem sometimes i find it hard to get through the day.....am trying to focus on just that and not dwell on my future to much...i first started having issues in 1987 and i am still staying strong..it's not always easy but it can be done.......hope this helps

 
Old 09-24-2009, 07:03 PM   #5
Member
(female)
 
Join Date: Jun 2007
Location: maryland, usa
Posts: 76
nikkiisshort HB User
Re: In Desperate Need For Help

No one in my family has PCKD, but my mom and grandfathers on both sides have had kidney stones (apparently there's a hereditary link). I was fortunate to not have to go on Dialysis when my kidney(s) failed because they caught it before it got worse (apparently, had I not gone to the ER when I did, I ran the risk of losing my kidney). I guess my case isn't as bad as some cases, but it always feels different when you're the one living it :\

They did, however, find a tiny cyst on my left kidney when they did a CT scan but because no one in my family (at least that I know of) has PCKD, they dismissed it and said it was a "Red Herring."

I have not seen a dietitian as of yet because I figured I'd try to figure out a diet on my own first. It is a very strict diet and is rather depressing sometimes because I had to give up things that I used to really enjoy (namely chocolate and toffee nut lattes).

I've tried to stay optimistic through this whole situation (at least as of recent) and it has helped, but I still get UTIs more than I should. My concern is that every time I get a UTI, there's damage that is done to my kidney and/or ureter. When I was having the chronic pain earlier this year, I saw several specialist and they all ruled out GI and Neuromuscular. Because the pain wasn't in my lower abdomen, they ruled that anything dealing with the ovaries or uterus was not likely.

Either way, I'm sorry to hear about your situation. I can't imagine having to go through what you went/go through. I'm glad though that you're at least doing a little better (at the least right?) Thanks again for your help and input! It did definitely help!

 
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