I was a very healthy 23 yr old female. I cant believe that I finally found someone going thru almost what I am going thru. My name is Liane and My life changed on July 7th, 2007. I went to the hospital for frothy urine. They told me it was a UTI and gave me Levaquin for 7 days. I took it for only 5 days cuz ( I was allergic too) then were gonna start me on macrobid. Mean time my hands,face, and bottom half began to swell up. Me thinking it was from my period but this was different. I work in a jewelery store and once my rings that are a size 6 DID not fit at all I panicked. I had extremely bad back pain, high blood pressure. I did not feel same. On July 13th (Friday) I went to a hospital here in southern california and talked to a doctor and she said.."sweetie u don't have a UTI, I don't wanna scare u but I think that U have a Kidney Disease called Minimal Change Disease"!!!! WHAT!!!! Am I gonna die? She says no but come Monday u need to see a specialist and confirm. Now here is a Lasix pill to help take some of the water weight that u have gained away. Its already about 1:30am on Saturday the 14th. She says u will not sleep cuz u will be urinating all night. I said well anything to help me, i had went from a very healthy 5' 7" 155lbs woman, I worked out in the gym 5 days a week with my boyfriend who is a Police officer and bodybuilder for fun, so me swelling up and devastated me. I took the pill. and went to sleep. Nothing happened to me. That meant something was wrong. Later that day Saturday I felt BAD. My face kept swelling, blood pressure kept going up, heart racing. I went to E.R and told them I felt like I was gonna die, I think I have minimal change disease I need a specialist now. They admitted me for 5 days. My specialist came in and saved my life. I had a ultrasound and kidney biopsy and they confirmed what I already knew. I had Minimal change Disease. I ended up being allergic to Dilaudid, and compozine in the hospital. I was released on the 20th of july. and now began my treatments. 3 x's a day of Prednisone at 20mg each, simvastatin 20mg once a day for high cholesterol now, lasix 20mg once a day, and omeprazole 20mg once a day to prevent ulcers from the Prednisone., I hate the Prednisone. I broke out so much on my face. And its not pimples it bumps. I wake up every morning at 5a.m with nasty heart burn. then wake up every 2 hours after. Doctor told me to take all my meds at once and it helped a bit but still not completely. I too feel bloated in the mid section. I still suffer from edema in my legs down to my ankles. During the day gets worse but once I put my feet up and elevate them I'm OK. I have bad mood swings I don't know how my loved ones put up me. One minute I cry, 20 minutes I'm happy and wanna go out for a walk. This drug is gonna help me but then Do I really need to put myself thru this? But there is not other way. Just thought of sharing my story.
Reply
over 2 years ago
on
Aug 08, 2007
by
jennyc,
#1117
You poor thing, I totally hear you and know exactly what you are going through. I don't know if you read my post, but I'm the one who has focal glomerular sclerosis, which is sorta like minimal change disease, but worse. When I had my biopsy, my doctor was hoping for minimal change, but I have FGS instead. The good news for you is that minimal change has a really good response rate for remission with prednisone. How long is your treatment for? I'm on it for at least 3-4 months, and I'm just over 2 months in. IT SUCKS!!! I'm just a shell of my former self. I was 112 when I started and now weigh 120. And 8 lbs really shows on me as I'm very petite. I had someone at work as me if I were PREGNANT! I was so embarrassed (her even more than me when I told her I wasn't!) The bloating is terrible, but try taking digestive enzymes and probiotics (acidiphylus) when you eat, it really does help. BE CAREFUL with the Lasix. I took it for my swelling (I got the swelling from the Prednisone, I didn't have any before I started the bloody steroids) but anyway I had a terrible experience, it totally dried me out and I got totally dehydrated, heart palpitations, the works. I now just take one every other day when I get really swollen. Anyway, I really hope that you feel better and good luck with your remission, like I said according to my doctor, Minimal Change really responds well so remember this is just TEMPORARY!!! I keep reminding myself that and I swear it's the only thing that keeps me going.