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kukukajoo
04-09-2009, 06:40 PM
OMG! An old friend has had his daughter diagnosed with the above, had her kidney bx, and not doing good. their doc sucks to say the least!

Without giving her any info on Cytoxan, they want to start her on it and did not discuss sterility issues!! Instead, she was given a shot of lupron to put her in medical menopause which I am flabbergasted at! She needs to start treatment ASAP and now this doc has given her possibly no chance at future kids at such a young age!!!

The doc has no bedside manner and chewed her out for a 10 lb weight gain in a week! She is on very high prednisone treatments and retaining water, what to they expect?! They want her on a restricted sodium diet, under 2 grams/day but NO nutrition counseling to go with that. Poor girl had a box of mac and cheese she thought she was going to eat until I counseled her on packaged foods, etc. I am horrified.

She is also not being treated by a team of docs, and her kidney doc readily admitted that she has poor communication with her other doc, which is hindering her treatments further.

I have also been looking at research and some say that Cytoxan is no longer a first line treatment, that there are other better ones.

Sadly, she has to stay in NH for treatment and can't go to any of the MDs in Boston. I have gotten them information on a MD at Dartmouth in NH and hoping to get her in there ASAP.

I am so scared for this young woman it is making me forget all about my med concerns which are so minor compared to hers.

What advice can I give the family? The mom seems to be in denial and the dad is trying desperately to process this information but is not medically savvy (I am SO trying to change that!). I don't think they understand the severity of this and they really need a better doc.

BonusMom
04-09-2009, 07:34 PM
Krissy-
So sorry to hear of this young lady's misfortune. It is so difficult when a parent is in denial as they are supposed to be their child's advocate.

I have no specific experience with kidnay issues, but would encourage you to con't your efforts to educate your young friend and her parents. The most important is the young lady-educate her on the foods she should eat/avoid. She's old enough to understand the consequences of poor choices.

My thoughts are with you as you help this family. Thank you for paying it forward. We can only hope your young friend will do the same once she's medically stable.

Keep us posted on her condition.

tasha
04-09-2009, 11:26 PM
wow, i am so sorry for this girl! i, myself, have lupus nephritis, and it's a scary thing. i don't know much about the treatments for stage IV and above, because i was at stage III before i was treated. they put me on cellcept, but i think it's only for stage III and below. i was told that if cellcept didn't work that i would probably have to take cytoxan, and my rheumatologist warned me about infertility with it and that if it came to that i would have to freeze eggs or something like that. i can't believe they never warned her about infertility!!! it sounds like there could be a lawsuit at stake here...

kukukajoo
04-10-2009, 07:27 AM
I think I am most upset that the doc is a poor communicator and did not explain all the choices and consequences to her, especially since she is only 18 and still has so many years and so much personal growth to experience! How dare she play God with this young woman's future childbearing!

Just today on the news there was a story of a man who while in HS underwent chemo for leukemia but froze sperm for future use. Well that was 22 years ago and he now has a beautiful baby because the doc had the foresight to look into this.

mountaindreamer
04-10-2009, 07:39 AM
hi krissy,

so sorry about this young lady....to be so ill, and to have a worthless dr. Do you think she could call the drs. office and request some time with a dietician to learn about what she can eat, and what she needs to avoid?

If the mother is a friend of yours, do you think she would listen to your advice, or at least read some information about her daughter's situation and recommended treatments?

I agree with bonusmom....you are paying it forward, and your friend's family is the beneficiary of your kindness.

kukukajoo
04-10-2009, 07:52 AM
I don't even know the mom. I grew up with her dad and recently reconnected and sort of dating, getting to know each other again. I almost feel we met again by chance just so I could help them through this sometimes, like somehow fate intervened.

The dad is really trying and has even moved back into the home to be there for his daughter, as him and his ex are still good friends and co parent well together. I am impressed with his commitment to his kids.

I lent them a book my doc wrote, Dr. Peter Schur, and he is also in contact with him for advice, etc. Sadly they have to stay in network which is in NH and can't go to Boston for treatment but he has given me the name of a good MD in dartmouth where they treat this as a team of docs, which only makes sense.

Given the seriousness of her progression I am scared for her and only want her to see the best of the best. It never amazes me that these docs don't have a clue and think they can treat this by reading a study or two and call themselves experts.

This doc admitted to the family that the last young patient she had committed suicide. I wonder if it had to do with all the drugs she gave her that affected her moods. I mean come on, prednisone itself causes emotional liability big time, and then to give Lupron on top of that just seems to be asking for trouble.

I am going to post a question on the meds board regarding lupron use in lupus as I have no information on this.

mountaindreamer
04-10-2009, 07:56 AM
thanks for the clarification Krissy,

you are in a potentially difficult position, and i know you want to do everything that you can to help. This young lady is fortunate to have her father in her life....he sounds like a wonderful guy. I am glad he is back in your life, you deserve kindness, caring, and compassion.