Lupus nephritis

[satay]

i have an aunt who was diagnosed with Lupus quite young and her daughter was at a young age too. My Aunt is now close to 70 and her daughter around 35. They have their flare ups but both are doing well. I wish your grandaughter well ..

 

[theoldchick]

Prayers for her continued improvement.

 

[bnewns]

If I had a Dollar for every time the doctors told us he wasn't going to make it, I would be a millionaire. Your grand daughter needs to live the fullest life possible. Regardless of her condition, life is too short. Alan's mom told him he shouldn't get married or have a girlfriend, so when he met me he didn't want to commit (luckily I won ) He missed out on a lot because of what the doctor's had told his mom. The best advice I can give is to enjoy life, but don't take un necessary risks, that alone will increase her immune system and help her overcome her flare ups.

 

[mh32792]

So glad you got some good news. Hopefully the Drs can get her through this flare up so she can get back to being a kid.

I have Lupus. My affected organ seems to be my lungs and my blood, I make 8 different antibodies against myself. My challenge the last few months has been low platelets, so I had to increase my Prednisone until the numbers come up. I see 6 different Doctors, with Lupus it's all about managing the disease. No 2 cases of Lupus are the same. My mother also had Lupus and hers was totally different than mine. She passed away at age 47 in 1972. I am 60 years old and I was not diagnosed till 6 years ago. It took a long time to connect all that was going on with me. I have a full life with 2 children 5 grandchildren. I do whatever I want to do when I feel like doing it. Try to take my medicine as needed and get plenty of rest.

Research for SLE Lupus is slow. People know the name but not really what it is.

 

[sourland]

Jenny is stoic and strong willed. She was first diagnosed with juvenile Rheumatoid arthritis at 3 or 4 - turns out that it was Lupus all along. I have NEVER heard her complain about the pain or the unfairness of this hateful disease. She plays soccer and field hockey - frequently in goal, but also as a 'field' player. She chooses to enjoy life. There is a strong possibility that she was not taking her medications as prescribed. I guess that bit about not wanting to be 'different'? She got the message with this close call, and will be more closely monitored by her Mom and Dad.

Her kidney function continues to improve. The last two days, in her words, have been "good days". Her Dad is able to work from home so he is with her daily, and friends are visiting daily. She told my wife, "I never knew so many people cared about me". One day at a time.

Again we thank all for their thoughts, prayers and comments. It helps.

 

[1muttsfan]

It can be hard at times to know that you will have to take medication for the rest of your life - and you know that rebellion and youth go hand in hand! I have a friend with a son that has juvenile diabetes, and she struggles with how closely she has to watch him. He has a tendency to get lax or "forget" to check his blood sugar, and gets upset with her when she reminds him.

 

[Bunnylady]

It can be hard at times to know that you will have to take medication for the rest of your life - and you know that rebellion and youth go hand in hand! I have a friend with a son that has juvenile diabetes, and she struggles with how closely she has to watch him. He has a tendency to get lax or "forget" to check his blood sugar, and gets upset with her when she reminds him.

It isn't just teenagers. I have known adults who prefer to deny their diabetes rather than control it; I guess some people just have to test the boundaries.

Jenny's fighting spirit can stand her in good stead, if she can remember to channel it toward fighting the disease, rather than the people and drugs that are her allies. I can sympathize with her parents. The kids want more independence, the parents want to be able to trust them, and you can't really be sure whether they are ready for that much responsibility until you let them try it. If Jenny was thinking, "Oh, it's not that important, what's the worst that can happen?", I guess she found out!

Great news that she's continuing to improve. Still praying for all of you!

 

[sumi]

I'm glad to hear she's doing well. But she must behave and take care now! It must be difficult for her, having to deal with this situation at her age. My cousin has diabetes and he nearly died twice this year already. He's a few years older than Jenny, but he got diagnosed about 10 years ago and I know it's been hard for him to deal with it. Not being able to go out and have a drink, have fun with his friends and being a "normal" teen.

 

[sourland]

After 2 weeks in the hospital Jennifer was supposed to come home today. They are starting a regimen of monthly infusion of her Lupus meds - didn't happen until late yesterday, and there are some questions about her urine output that may change this release. She was 'bummed' last night but realizes that she must do what the doctors dictate. I become more and more convinced that medicine is not an exact science.

 

[sumi]

I hope she can go home soon!