Lupus nephritis

[sourland]

Glad you had a good visit with your g-daughter Sour! Will her college be open for live classes or is everything online now?

Right now both girls are scheduled for live classes, but only time will tell whether or not that will take place. Son is taking Catherine up to Syracuse in two weeks as she is involved with freshman 'introduction' to the school - maybe.

 

[N F C]

Right now both girls are scheduled for live classes, but only time will tell whether or not that will take place. Son is taking Catherine up to Syracuse in two weeks as she is involved with freshman 'introduction' to the school - maybe.

Yep, that uncertainty (about everything!) is frustrating. I hope the girls are able to enjoy their school year.

 

[drumstick diva]

Life is uncertain, don't let it make you nuts Sour. I was born nuts (my father claimed) so I had a head start adjusting to it. Okay still NOT adjusted but, getting along . Not letting covid take over my thoughts. I tested negative on your birthday Sour. I took that as a good omen.

Had to have the test before a procedure the doctor had scheduled. After the procedure had a massive 3 color bruise from the nurse's two attempts to start an IV, that took two weeks to go away. Procedure turned up benign as well. Thank goodness.

 

[Hennie Pennie]

My grand daughter was diagnosed with Lupus at around 4 years of age. She is now nearly 14. Her flare ups have been severe but relatively infrequent. Puberty appears to have increased the frequency. Standard medications have succeeded in inducing remission, and her life has been pretty 'normal'. We are presently in a bad space. On Monday of this week she ended up in ICU at University of Md Medical center. The presumptive diagnosis is Lupus nephritis. She is stabilized and a kidney biopsy for a positive diagnosis was taken on Friday. One small ray of hope is that they did not 'install' ports for dialysis because there was a slight increase in kidney function. We should have a final diagnosis on Monday. I know the long term prognosis and don't need to hear anymore of that. Can anyone give me any hope/help.

She is Asian and adopted. I mention this fact only because of the fact that we know nothing of her family medical history. Friends at a local Chinese delicatessan have told me that the province from which Jenny comes seems to be endemic for people with 'arthritis'.

I knew there was probably a time limitation on the period for which we would have this child, but I hoped for more.

I am the fixer, the helper, the protector of this family and I am lost because I can do nothing for her. I have faith and believe in the power of prayer. I think we need a miracle.

Hi There- am very sorry to learn of your granddaughters situation. I am a RN and belong to a Facebook group called "Nurses with Cards" I strongly suggest you request to join this site and then post the information you have provided above- and you will receive help from expert nurses that work with patients like your granddaughter. You may receive a suggestion that is very helpful- I find the group to be very knowledgeable and compassionate in their responses. Blessings to you and your entire family. H.

 

[Jenthehen127]

VERY positive update. I think that we were granted a mini miracle. Went to see Jenny today, and here is where we are. Kidney condition has gone from: Rapid kidney deterioration to decreased rate of deterioration to some signs of kidney function. The results of Friday's kidney biopsy indicate "Kidney damage of a degree that indicates probable complete recovery given a regimen of proper treatment and diet." Doctor talk for, "We think the kid will probably be OK this time."

More work is going to be instituted in an attempt to determine 'triggers' which are causing the flare ups coupled with a Lupus/kidney diet to minimize problems - a heck of a lot more positive than when we were notified on Wed. Apparently when she was put in ICU on Mon. things were touch and go for about 12 hours. Her arms, legs, torso and face are still bloated with retained fluids, but they are being flushed from her body gradually. Jenny is amazing. With us there she started questioning her Dad about : How sick was I really. Am I going to make it? What are my long term chances? Pretty heady stuff for a kid - He answered her candidly and quite honestly - a truly good moment.

Tonight I can sleep.

I'm just seeing all of this. What a great update, what a challenging situation. Added you, Jenny, and the family to my prayer list. xo Hang in there!

 

[sourland]

Today she is 22 years old and thriving. She's doing exceptionally well at school, and her friend/fishing partner has apparently morphed into her boyfriend. The Princess texted her today, and she texted back saying that she loved and missed us. We'll call tonight and 'sing' to her. This Pandemic sucks big time.

 

[BigBlueHen53]

That's awesome, Sour!

 

[theoldchick]

So glad to hear she is doing well.

 

[N F C]

Today she is 22 years old and thriving. She's doing exceptionally well at school, and her friend/fishing partner has apparently morphed into her boyfriend. The Princess texted her today, and she texted back saying that she loved and missed us. We'll call tonight and 'sing' to her. This Pandemic sucks big time.

Glad to get an update on your g-daughter Sour, it sounds like things are going well for her. And I know you're a happy grandpa to know that!

 

[drumstick diva]

Mazel Tov for her Sour, means congratulations!!