Nephrotic Syndrome

Posted by kisianik @kisianik, Sep 20 7:01pm

Hello

My mother in law (81 y.o.) went through something nasty, possibly even Covid last December 2019 to January 2021. As a result of that disease her kidneys were damaged and started to shed protein. Eventually she was diagnosed with Nephrotic Syndrome.
The treatment was supposed to be in cycles: 3 months of heavy steroids, 3 months of oral chemo, repeat and so on.
She could not tolerate chemo due to side effects, so her doctor advised to use only steroids. Unfortunately steroids not advised to be used longer than 6 months in a row (by now she is on 8th month). Her doctor says that he can not change the treatment plan and she would have to be on this treatment until the end (and there are so many side effects…).

So, we went to UCLA for second opinion and found out that this steroid/chemo cycle treatment can be phased out in lieu of another treatment involving Prograf and Cellcept.

We would like to get third opinion on this matter.

I am a registered nurse and I know Mayo Clinic through Liver Transplant program (many of my patients in the past got new liver from you, thanks).

What are the options to get second/third opinion in Mayo Clinic? Can it be done remotely, we will send you all the labs, talk on the phone for assessment and your doctors will make suggestions, or we have to physically come for visit?

Can you provide more resources on this matter, where to start, etc?

Really appreciate in advance for any suggestions.

@kisianik Welcome to Mayo Connect! As a nurse you find it so disconcerting to be in this situation with your mother. You can contact Mayo Clinic at http://mayocl.in/1mtmR63
Here is what Mayo Clinic has to say about nephrotic syndrome: https://www.mayoclinic.org/diseases-conditions/nephrotic-syndrome/symptoms-causes/syc-20375608
From the American Kidney Fund, comes this website: https://www.kidneyfund.org/kidney-disease/other-kidney-conditions/rare-diseases/nephrotic-syndrome/

I know from experience that it is critical to find out the cause of protein shedding in the kidneys. I am stage 4 kidney disease, due to a rare disease that deposits collagen into the glomeruli components of my kidneys. Other causes could be diabetes or systemic lupus.

You didn't mention where her primary diagnosis came from. Besides UCLA, Cedars Sinai and Keck School of Medicine at USC are good west coast sources for you. Those last two were who diagnosed my ultra-rare disease.
I hope you let me know what you find out, We are all patients/family members/caregivers here, who share their own experience and strength with others.
Ginger

Liked by fiesty76

REPLY

Hi @kisianik, welcome to Mayo Clinic Connect, an online community of patients and caregivers.

Video and phone visits can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs. Here's more information:
– Safe in-person and virtual care https://www.mayoclinic.org/covid-19

To find out if a virtual visit is possible for your mother, call one of the Mayo Clinic campuses. Here's the contact info http://mayocl.in/1mtmR63

Additionally, you may wish to read more about the Nephrology and Hypertension Department https://www.mayoclinic.org/departments-centers/nephrology-hypertension/sections/overview/ovc-20464571

I can understand why you would prefer a virtual visit for your mom at this time. How is she feeling?

REPLY
@gingerw

@kisianik Welcome to Mayo Connect! As a nurse you find it so disconcerting to be in this situation with your mother. You can contact Mayo Clinic at http://mayocl.in/1mtmR63
Here is what Mayo Clinic has to say about nephrotic syndrome: https://www.mayoclinic.org/diseases-conditions/nephrotic-syndrome/symptoms-causes/syc-20375608
From the American Kidney Fund, comes this website: https://www.kidneyfund.org/kidney-disease/other-kidney-conditions/rare-diseases/nephrotic-syndrome/

I know from experience that it is critical to find out the cause of protein shedding in the kidneys. I am stage 4 kidney disease, due to a rare disease that deposits collagen into the glomeruli components of my kidneys. Other causes could be diabetes or systemic lupus.

You didn't mention where her primary diagnosis came from. Besides UCLA, Cedars Sinai and Keck School of Medicine at USC are good west coast sources for you. Those last two were who diagnosed my ultra-rare disease.
I hope you let me know what you find out, We are all patients/family members/caregivers here, who share their own experience and strength with others.
Ginger

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Appreciate fast reply, did not expect so quick.

Originally she was hospitalized at Cedar Sinai Los Angeles, so we already utilized 2/3 your recommendations.
Unfortunately or fortunately we can not find primary disease yet. Cancer was ruled out after vigorous testing, good news. We right now pursuing Rheumatology consultation at UCLA. So the source of her troubles is unknown as of now.

Treatment's side effects are the problem, so we seek other possibilities while we searching for the primary cause.

REPLY
@colleenyoung

Hi @kisianik, welcome to Mayo Clinic Connect, an online community of patients and caregivers.

Video and phone visits can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs. Here's more information:
– Safe in-person and virtual care https://www.mayoclinic.org/covid-19

To find out if a virtual visit is possible for your mother, call one of the Mayo Clinic campuses. Here's the contact info http://mayocl.in/1mtmR63

Additionally, you may wish to read more about the Nephrology and Hypertension Department https://www.mayoclinic.org/departments-centers/nephrology-hypertension/sections/overview/ovc-20464571

I can understand why you would prefer a virtual visit for your mom at this time. How is she feeling?

Jump to this post

Appreciate your reply and resources, will take time to digest.

Main intolerable side effects of Prednisone huge dose – severe weakness (she fell couple times already, so far no fractures), loss of vision (blurriness in combination with nearsightedness) and severe pain in both legs.

If Mayo Clinic was within driving distance we would not hesitate face to face appointment, but since it is not (common guys, you are not in Golden State?!), and now Covid situation, all options are on the table.

appreciate all suggestions provided.

REPLY
@kisianik

Appreciate your reply and resources, will take time to digest.

Main intolerable side effects of Prednisone huge dose – severe weakness (she fell couple times already, so far no fractures), loss of vision (blurriness in combination with nearsightedness) and severe pain in both legs.

If Mayo Clinic was within driving distance we would not hesitate face to face appointment, but since it is not (common guys, you are not in Golden State?!), and now Covid situation, all options are on the table.

appreciate all suggestions provided.

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@kisianik There is a Mayo Clinic campus in Scottsdale/Phoenix area. It is a short plane flight, about an hour. And about a six hour drive to Phoenix area, all freeway. My friend had her kidney transplant at Mayo Phoenix, and drove from the Pasadena area! Besides, it would get you away from the smoke and bad air of the Bobcat Fire, right?
Ginger

REPLY
@gingerw

@kisianik There is a Mayo Clinic campus in Scottsdale/Phoenix area. It is a short plane flight, about an hour. And about a six hour drive to Phoenix area, all freeway. My friend had her kidney transplant at Mayo Phoenix, and drove from the Pasadena area! Besides, it would get you away from the smoke and bad air of the Bobcat Fire, right?
Ginger

Jump to this post

Appreciate the suggestion.

But my mother in law is 81 y.o. with compromised immune system already, even thinking about the possibility of second Covid (she still denying that first infection, even though she was hospitalized for almost a month, so it was not just a flu) make us shiver.

Not at this time, preferably.

REPLY
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