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Posts (7)

Nov 28, 2018 · IgA Nephropathy - Managing flare ups in Kidney & Bladder

My doctor ordered bloodwork and an urinalysis yesterday. Will get results tomorrow. Seven years since diagnosis. When I was first admitted to hospital the doctor surmised that I would need a transplant within 6 months. That is how bad things were back then! Six IV treatments of Cytoxin, high doses of prednisone since the start, 3 types of blood pressure meds twice daily, and numerous other pills. My quality of life is “no quality”! That is what irks me the most. Feeling exhausted and beat up!
Yes, IgA is incurable. Sad fact! I just hope to someday be the person I was before this illness!
Are you living with Berger’s disease also? I hope you are feeling well, thanks for your time!

Nov 26, 2018 · IgA Nephropathy - Managing flare ups in Kidney & Bladder

I am having a flare-up with this IgA kidney disease for the past month. Is there anyway you can do some type of dialysis maybe once or twice a week to bring down creatinine and decrease body water. Even the slightest increase of Cr affects me tremendously! From 1.5 to 1.8 and I feel nauseous daily, vomit at least 2 times per week, have no energy, flank pain increases, neuropathy in feet quadrupled and it is hard to breath. Do I really have to get down to 15 GFR before I can “feel better” v
That seems bizarre!

Oct 4, 2018 · Kidney failure and AL amyloidos in Kidney & Bladder

Thank you Rosemary. I went to Mayo Clinic in Jacksonville for a second option when I was diagnosed 7 years ago. Loved the vibe, but, could not do the 5 hour drive and hotel stays every week. I have a great nephrologist here in Venice, FL. Only problem is, her 65 year old Mom also has IgA. She only has minimal complications from her illness. My IgA is the advanced one which will lead to kidney failure someday. So, sometimes, my multiple ailments seem to baffle my doctor. Wish I only had the easy IgA. But, life dealt me the “bad hand”! I will stay in contact!

Oct 4, 2018 · My Second Chance - Savannah Mullis

Inspirational article. When I was diagnosed 7 years ago, the nephrologist predicted 6 months until I would need a transplant. Though, I suffer “flare ups” way too often; I am still not even on dialysis! Sometimes, I wish I could just get a new kidney, so, I can reclaim my old ‘vital” self. But, my body has it’s own plan. When I am down, I am down!! When I finally have an “upward spiral”, I do live life to the fullest. As a matter of fact, I went hiking in Ouray, Colorado in June. It was beautiful, until 20 minutes into hike, I slid down the trail and smashed into a tree with right shin. Of course, I didn’t spoil my vacation to go to the ER. I waited 10 days until I retuned to Florida. Mistake! By then it was gangrene, due to prednisone and Immuran. After, surgery and IV antibiotics for a month….I finally was released by surgeon yesterday!!!!
He told me to “get back to the mountains. Just don’t FALL!”

Oct 4, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

I was taking gabapentin for two years. I really felt no improvement, so I discontinued it. I already take 15 pills per day. When the pain in my feet gets to bad I take oxy 10 MG. It helps with all the other areas too. Flank pain is bad also.

Oct 3, 2018 · Kidney failure and AL amyloidos in Kidney & Bladder

Anyone with IgA? I was diagnosed 7 years ago! Does anyone with IgA suffer from neuropathy of feet and hands? Currently having a “flare up”, extreme exhaustion and flank pain! Anyone else out there feel similar symptoms? When your creatinine goes up, do you feel nauseous?? That is what it does to me!

Oct 3, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

I have IgA nephropathy! 7 years into disease. Prednisone 20 mg daily along with immigrant 125 mg. Daily. Three blood pressure meds! GFR still at 30, creatinine at 1.7. Does anyone else have bad neuropathy in feet from similar kidney disease?? Night time is the worst!