We received the results of her kidney biopsy this morning and the news is mixed. She does not have any secondary kidney disease (unrelated to the HSP), which is good. The bad news is that her HSP has caused Nephrotic Syndrome (NS), which is essentially necrotizing (killing) the filters in her kidneys. Good news is that there does not appear to be any scar tissues (meaning she is still in early stages of it). Bad news is that the NS is still active at this point, and apparently has been strong enough to develop recently despite the steroids she has been on for the past month.
They are going to give her massive IV doses of another steroid for the next three days, and she will begin treatment with an immunosuppressant drug as well. She will be on some level of this drug regimen for the next 9-12 months, and will be monitored very closely for further kidney damage. Because she also has an entirely separate blood disorder, she will also be watched closely by her hematologist for any complications from the immunosuppressant. Her long term prognosis is pretty good, assuming we can halt the current active NS in the next few days. Lars and I both feel very good about the team of doctors we have working with her.
It is harder to feel good about the coming months when Meredith will likely exhibit all the typical steroid side effects – mood swings, anger, bloating, weight gain, uncontrollable appetite. While I’m sure this is an extreme, one doctor said that some families have had to buy locks for the refrigerators and pantries to keep their kids from gorging themselves. We will literally have to eliminate all fatty foods and sugary snacks from our lives. (more after the break)
I’ve told people at work about the results and have received a lot of e-mails that say “Glad to hear she’s on the mend.” Forgive my venting for a minute, but jeez that feels so dismissive. Yes, she is on the mend and yes, it could have been so much worse. But as it is, it sucks pretty bad. She’s going to be on heavy chemicals for a long period of time, and is going to face a lot of challenges over the next 6-12 months. In 10 years, hopefully this will all be a bad memory, but we’ve got a long way to go.
I have been on a huge emotional roller coaster for the past 24 hours. And, actually, for about 3 weeks prior to that. It does feel good to have clarity and it does feel good to have a plan. I just hope that THIS TIME, things go along as they are supposed to.
I am going to do my best to get my life, including work, back to normal starting next week. Today and tomorrow I’ll still be spending some time at the hospital, but unless we have further complications, she should come home this weekend and I’ll be able to focus more fully on work again which my bosses and colleagues will appreciate (for the record, they have been ultra supportive).
If anyone feels like dropping by on Friday afternoon, feel free. She’s in room 433, and the hospital school lets out at 12:30. Her classmate Jack came by yesterday and she had a blast visiting with him. Getting back to school is top priority in her list right now.
As always, thank you all. That feels very inadequate for all the love we’ve received, but thank you.