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life with chronic kidney stones, subutex and pregnancy?

I'm a 30 years old woman and have been passing chronic kidney stones since I was 18. The first one at 18, I went to local ER was given Toradol & CT with contrast (IVP dye)- worked like a champ until I went into delayed anaphalactic shock (throat closed off)and almost died. Dr's said no big deal, just stay away from NSAIDs, Toradol and IVP DYE in the future. NO CT's with contrast. Which was fine b/c I thought the whole stone thing was a fluke or one time thing. wrong. 2 visits to ER at 19 with more, this time they gave me some Demerol, flushed me with fast paced iv fluids, passed then went home. This continued several times a year until I became pregnant at 23- was fine until 18 weeks along, then passed 2 at local ER. 2 weeks later another trip to ER,local urologist didn't want to touch me while pregnant so sent me to major med center by ambulance- said stone was too big to pass. NEW HOSP Dr at med center said you must of passed it and missed it while straining bc CT shows its gone. Pain was gone at time thought "ok" went home. 3 days later, HORRIBLE pain back and passed the biggest stone yet. Thought it was too big to pass? dr's said it was gone? Continued to pass more stones each week. Local OB sent me back to medical center, went to new OB and supposedly one of the best Urologist in the City. Never really got any crazy illuminating answers, lots of test. Dr said someone should have told you prior to getting pregnant that if you are a "stone maker" it will become even worse during pregnancies. No, not told. Pregnancy continued, with me taking 500 mg hydrocodone only when it got horrible. I felt so guilty to take it while pregnant but Ob said I have to control my pain or I'd go into early labor and loose my baby. Every week stones became bigger and more frequent, OB told me when I couldn't stand it anymore she'd hospitalize me and put me on a pain pump until I got ready to deliver. I had several short hospitalizations, surgery and then EVIL horrible stents- which were worse than any stone pain I'd felt. I stuck it out from 18 weeks until 36 weeks. At 36 weeks I couldn't even stand and walk bc gravity would hit and stones would start moving down- it was horrible. I was on pain pump for 2 weeks then had my child. She was put on a respirator for 2 days (dr's said she was okay but, just couldn't breathe on her own and then NICU for ten more days bc she couldn't keep her temp stabilized without an incubator. Nurse's made several ugly comments to me that she cried a lot & it must be bc of all the "medication" I took. I'd leave the NICU sobbing, feeling guilty when none of it was my choice or fault. But, my family and I never saw any problems with her after the respirator taken off, yes she would cry but as soon as you picked her up and held her she stopped. I'm sure she did have problems bc of the pain pump, I'm not ignorant to that. Today, she is a healthy, smart and thriving 7 year old who wants another sibling so badly. I want another child so badly but, feel like another pregnancy would be equivalent to suffering with cancer for 9 months. During my pregnancy, I passed over 80 stones. In the first 6 weeks after delivery I passed another 15. The original lower dose hydrocodone didn't work anymore- so my dosage was upped but not with out attitude and reluctance from dr and his nurses. I continued passing 4-5 stones a month for the next year- and eventually my dr didn't want to give me pain meds even though he knew I was having chronic stones. He sent me to a pain specialist and this continued for about 3 years. I ended up having to take much stronger meds as time went by & was on birth control fearing getting pregnant again. Finally, stones had gotten somewhat better but, I had developed a dependency on the pain meds. Went to dr and said I didn't want to live like that- wanted to get off narcotic pain meds but didn't know what to do since my stones were still passing. During this time niether (many)urologist or nephrologist had any answers other than "you are a stone maker & this will be your life". Was sent to a Dr that prescribed me subutex, got off birthcontrol bc heard that birthcontrol makes your body think it's pregnant- and pregnancy makes my stones worse.But, no dr could back that up. Have been able to live life with less and less stones, while on subutex and my quality of life has gotten so much better. But, the stones have been frequent enough (a couple a month) that I haven't been able to get off and stay off subutex. Although, I am no longer on medication that alters my mind or sobriety, I am still DEPENDENT on this subutex. Dr's seem to think I CAN GET PREGNANT- but, it would probably be more the same. My subutex dr says I can get pregnant while on subutex if I can get on a lower dose. But, I'm reluctant bc of the attitude I got while pregnant on low dose hydrocodone. I don't want my baby to affected bc of my subutex. I'm on a high dosage. I could switch back to regular narcotic meds if I got pregnant but, at how high of a dose bc of my tolerance? I know that Hydrocodone and Percocet stopped working years ago before I started the last 5 years on Subutex. The more time that passes since my pregnancy my stones are getting somewhat better. I'm afraid to get pregnant again and have to live the next 5 years after going the the roller coaster of pain, life on narcotics meds and then life and tapering off subutex. I know I can do it though. or I hope so. It seems like anyone would read this and say "no- !**@!" no more babies then. But, tell that to a mother's heart. And I am thankful for the one beautiful child I do have. I don't feel adoption is for my family. If I had money for a surrogate I would do it a heart beat but, I don't. Has anyone had any experience similar with mine, pregnant or not? Subutex and stones? 2nd pregnancy with chronic stones? Pregnancy on higher doses of pain meds or subutex and pregnancy? I'm also very afraid that since I'm on the highest dose of subutex (8mg x 4 aday)that if I got in a "bad car accident" for example: that the hospital wouldn't be able to treat my pain bc the subutex is so strong that it blocks other narcotic pain meds. I've been given 2 doses of morphine at ER and still get no pain relief and remain sober as a judge. I've done all the test, 24 hr urines, nephrologists, whole 9 yards, still no answers. I would like to hear from anyone who has any similar experience that might help me. I know this is so long. I apologize. thanks so much.
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replied June 17th, 2014
I had my first stone at 20 then again at 28. And since 28 ive battled this for 6 years. It's awful. The hospital acts like im some kind of pain med seeker. It hurts cause I have so much pain from them. They have ruined my life. I've been to several urologist. They act like they want to help at first ., then blow me off. Mine our oxilate calcium stones. I follow the diet. But still get them. They say they're hereditary.
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