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Joined: Aug 22, 2012

FSGS. My husband has had FSGS (Focal Segmental Glomerulo Sclerosis) for 11

Posted by @grace7, Aug 24, 2012

FSGS. My husband has had FSGS (Focal Segmental Glomerulo Sclerosis) for 11 years. He has not needed dialysis or transplant as of yet. 4 years ago he started going to Mayo in Rochester and had been stable for 4 years. About 4 weeks ago he had a relapse and gained 10 lbs of water weight. August 13th he went up to Mayo. He had a biopsy done which didn’t show anything new. They infused him with 1000 mg of prednisone which we don’t think phased him; the prednisone pills he took years ago did awful things to him; upset stomach and angry feelings . For the first time with this disease, his potassium is high. He takes 4mg prograf in morning and 4mg at night; he has taken prograf for the last 4 years. He goes back up to Mayo Sept 12.The doctor is crossing his fingers that my husband will get over this relapse, but there is no guarantee. This morning I am feeling a little overwhelmed; He has to eat low potassium, low phosphorus, along with his already low sodium, low protein diet. He is on 40 mg lasix 2x/day and gained .8 lbs this morning on the scale, in the last 24 hrs. For whover reads this, I would appreciate your prayers for my husband and also for me and our 14 yr old.

My husband has also had a problem for a long time, getting up to go the bathroom about 3 times a night even though he takes Detrol for that. He has had his esophagus stretched twice because the muscles in his esophagus don’t work right; he is at the point where it is hard for him to swallow meat and that doctor says whenever my husband is ready that doctor will do another stretching -ugh, it is awful; they put him all the way under and it is difficult for me to watch him come out of the anesthetic (sp?); he takes prevacid for this condition.
The need to take Detrol and Prevacid came after the kidney disease.


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