Lupus nephritis

[sourland]

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.

 

[sourland]

The good news continues. Jen remains in remission, and they are even reducing some of her medications - that always makes me a bit nervous, but ------- The Princess talked to her tonight, and she got a 4.0 for her last semester. This is the kid who was asked to leave school 4 semesters ago because of failing grades. It is so good to see her happy and succeeding.

 

[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.

 

[sourland]

We had our Christmas on Sunday. Jen is no longer at college. Failing grades led to her being asked to drop out at least for a bit. Basically her meds have given her 'chemo brain' which has impacted her cognitive abilities. Amazing what a difference reduced stress can do. She has gained weight, nervous tick is gone, and she is smiling. Hopefully she will go back to community college on a limited basis . She is already looking for a job.

 

[sourland]

Jen was 25 years old yesterday. She's been in remission for quite a while now. She and her boyfriend are on their way to spend the weekend with us.

 

[sourland]

Four and a half years ago I came here and asked for prayers and help. You folks responded, and so did God. On Friday Jennifer graduates from high school. Thanks for your support.

 

[sourland]

During exams she had a minor flare up, but her doctors got things under control rapidly. What a difference a year makes. After exams she has A's and B's in all courses - one incomplete due to a misunderstanding. She has until mid Jan. to make up the work. Princess asked her what she thought was making the difference, and she feels it is the change in medications. It is so very good to see her smiling again.

 

[sourland]

Today she is 23 years old. Right now the entire family is scheduled to meet here on 12/27 for our Christmas celebration. Spoke to her today - she feels that she did well in her final exams and is on schedule to graduate in May. So far so good.

 

[sourland]

@Wisher1000 thanks. Spoke with son this AM, and Jen is working her way out of her angst. She has been such a champion at dealing with this. This was the first time that she has openly faced/voiced her mortality. Too young to deal with that.

 

[sourland]

Not coming this weekend. DC area is to get hit with a snow storm. Not too bad up here, but it's better that they not come. Princess does not need an anxiety boost. Jen is a strong kid. When she had the flare up that initiated this thread we were there in her hospital room when she asked her father if they had expected her to die. He handled it like a champ with no sugar coating, and she dealt with it calmly.