Discussions By Condition: Medical Stories

my story

Posted In: Medical Stories 3 Replies
  • Posted By: miserableMOE
  • January 19, 2007
  • 07:14 PM

Hi, I am a 34 yr old female. I have had kidney problems my whole life. Infection after infection and so on. When I was about 8 or 9 I was diagnosed with kidney reflux. This was found after a numerous amount of testing. Basically, my ureters are deformed in my kidneys. This makes it so that all the urine does not leave the kidneys. Then it sits there and causes infection. When I was 25 and pregnant (no Doc ever told me not to get preg!) I went into kidney failure!! There was so much pressure that the urine backed up until my right kidney almost exploded! I was in surgery at 22 weeks preg on X-Mas eve 1997, The Urologist ordered a nephrostomy placement. (A bag that goes in kid to drain and hangs on outside of body) The goof doing my surgery, missed my kidney the 1st try and punctured my lung! Then tried a 2cd time and deflated my kidney where I had urine going through my blood stream. AND I WAS PREGNANT, awake and only Demorall for pain. Both my daughter and I should of died. 2 nights in ICU and then a diffrent Dr. tried and got the tube in correctly. To make a very long involved story shorter. My daughter is going to be 9 on Jan 23rd.! To this day, I have kidney pain. Sometimes so excrutiating it takes my breath away! I have been told by like 10 different Dr's that there is no such thing as kidney pain. That nobody can "feel" pain in their organs!!!! BULL@#^* Kidney pain is real. Sometimes like an ice pick has been stuck in it. Also for the past 10 years I have had about 15 kidney stomes which are massivly painfull. Even when you are not passing one. Sometimes I get attacks when I believe the stones are moving around and I have wished to die at times. Spent years on Oxycontin, Fentynal and various other pain meds. In 2006 I had 3 kidney infections with each lasting more than a week. I sometimes have to catherize myself in order to relieve all urine possible. Doctors had mentioned taking out my kidney, cauterizing all nerves around it and then outting my kidney back in..I do not think so! The crappiest thing with this all is I cannot have anymore kids. But I thank God I have the 1 that I do. And now in my 34 th year of life, I also have 2 herniated discs in my back, 3 damaged nerves in my back and possibly pheochromocytoma (tumor on adrenal gland) which I am being checked for. I suffer 1 - 2 migraines a month. I am Bipolar and have OCD. Regular panic attacks too. The amount of medication I have in my house could seriously treat 10 people. I recently took myself down to my anti depressant, pain patch and roxicet for break through pain. I constantly feel like sh*t! No energy no desire BUT because I have my daughter, I get up everyday, get her to school, take a shower and cook dinner. When she is not around , I do my laying around. I continue to try and do the most and the best that I can do. Even though there have been times I just wanted to swallow a bunch of pills and end it all. But I could never do that to my little one. I look into her eyes and see that she needs me and loves me. And I cannot deny her my life. I hope my story can help anybody even the tiniest bit. Thanks for listening
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3 Replies:

  • wow....i feel your pain 100%. i too know what it feels like to suffer from pain in the kidneys and be told that it wasn't possible. in june 2006 i started getting a pain in my right abdominal side and sought help from a urologist. after numerous tests they thought that it was kidney stones which turned out to be wrong. i was put on vicodin for pain and some type of antibiotics which turned out to be pointless. i was then referred to a gastrointerologist because i started to get stomach aches really bad when the pain started. shortly after, the pain traveled to my left side also and the eventually my back. the gi doc did a bunch of tests and found gastritis, esophigitis and stricture. i was then referred to a nephrologist who diagnosed me with bilaterral medullary sponge kidneys. i was told that it is a rare genetic disease with no cure or treatment and there was no way that it was causing me to be in extreme pain because those weren't symptoms of the disease. my abdominal side are soo tender even to the touch and now they are telling me that i may have some type of nerve damage. i know what it feels like to be in constant pain like you. i am 21 yrs old and have a 3 yr old daughter. i too suffer from anxiety and take more medication than i can name. i have migraine headaches also and a cyst on my left kidney. i also have a heart condition. all my xrays show my kidneys are swollen and i have had kidney stones and kidney infections in the past. i was starting to feel like no one understood how i felt. being on painkillers(vicodin, demerol,morphine) for the last 7 months and still no answer to why i am in pain. you have really given me some hope and now i don't feel so alone. thanks!
    Brittany101 8 Replies
    • January 23, 2007
    • 05:20 AM
    • 0
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  • I am sorry to hear what you are going through and so young too. The only suggestion that I can give you is lvoe your daughter the best you can when she is around and when she is napping or not there, please take time to do what you need to do for yourself! I try so hard to keep my agony from my daughter and I constantly keep a near fake smile on my face when I am with her, BUT, if she goes to a friends or is out playing, I take advantage and lay down and cry. At times this makes me feel like I am going through this all by myself, but what good does it do to burden other people with my pain? I truly hope that you have family to help you with your daughter. Today is my daughter's 9th birthday and I know she was a pistol at 3 yrs old! lol Did you have any of these problems as a child? Anyone in your family? Make sure that you talk to all Dr's about having another baby. I almost lost mine and my daughters life. Medically, for how far I was in kidney failure, they do not know how we survived! And you would think that would make me ok not having any more kids but I dwell on the idea always. I would do it all over again to have another child. I know all about how everyone says "be happy with what you have" But still I wanted 4 kids! But this way, I get to spoil the ***l out of the 1 that I have. Take care! And thanks for replying!:)
    miserableMOE 52 Replies
    • January 23, 2007
    • 05:32 PM
    • 0
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  • thanks for replying
    Brittany101 8 Replies
    • January 23, 2007
    • 09:56 PM
    • 0
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