25 year old FSGS, protein over 20,000

Posted by bargardner1 @bargardner1, 4 days ago

Extreme edema, uncontrolled blood pressure, on 3 different medications, on steroids and Cyclosporine, protein over 20 000, heavy diuretics, extreme bruising. No confirmed diagnosis. This is my granddaughter.

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parrot53 | @parrot53 | 3 days ago

So worrying. If it was me, I would get her to the best teaching hospital around asap. I wishing you and your granddaughter the very best.

tdseid1961 | @tdseid1961 | 3 days ago

Can she go to the Mayo Clinic

closetmonster93 | @closetmonster93 | 3 days ago

@bargardner1 You can request to speak to a doctor on the Mayo Clinic website, they have that option, so an appointment can be established, as I did this recently. I hope you can do this option so you can get some insight and information that is greatly needed. I wanted to bring this option up, as I was not sure if you knew about it. I hope you get answers and help. 🙏Godbless.

Cheryl, Volunteer Mentor | @cehunt57 | 3 days ago

@bargardner1 that does sound like a lot of protein. Since this is posted in the Kidney & Bladder group, Does your granddaughter have a nephrologist? Who is ordering & monitoring these tests. Who is prescribing and monitoring the medications you mentioned? I’m hoping and praying for a diagnosis and beneficial treatment plan soon.

bargardner1 | @bargardner1 | 3 days ago

In reply to @tdseid1961 "Can she go to the Mayo Clinic" + (show)

We live 11 hours away from the nearest one. Auto transport is not an option . Insurance has to approve.

bargardner1 | @bargardner1 | 3 days ago

In reply to @cehunt57 "@bargardner1 that does sound like a lot of protein. Since this is posted in the Kidney..." + (show)

Yes,she is under the care of a Nephrologist. She hasn't been able to get a concrete diagnosis. Biopsy is inconclusive

bargardner1 | @bargardner1 | 3 days ago

In reply to @closetmonster93 "@bargardner1 You can request to speak to a doctor on the Mayo Clinic website, they have..." + (show)

Thank you

bargardner1 | @bargardner1 | 20 hours ago

In reply to @tdseid1961 "Can she go to the Mayo Clinic" + (show)

She is in the hospital here, not stable enough to go home. She broke her foot in 3 places, prepping her for surgery they discovered she was in kidney failure and hemoglobin was 5.2 , she still is non weight bearing. I would love to get her to Mayo,but have no idea how to get her there. She has been in the hospital this time 3 weeks tomorrow