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

Posted by @grace7 in Just Want to Talk, 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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