Biopsy Final Results

French Word(s) of the Day: les maladies auto-immunes (lay mal eh dee oh tow ee mun)- auto immune diseases

Many people think lupus is Latin for “wolf,” but the actual translation is “complete and utter confusion.”  It’s appropriately named, as doctors still only have vague ideas about it and most ordinary citizens know it as “the disease that no one actually had on House, MD.

It should come as no surprise that my results caused utter confusion.  I got a message from my doctor that started with, “Your report shows a focal proliferative form of lupus nephritis progressing towards diffuse proliferative form with membranous nephropathy” and ended with “Please let me know if you have any questions.” (I assume she actually meant “Please let me know if there’s any part of this that you DON’T have questions about.”)

I experienced a panic that I haven’t felt since my last biology test.  Am I supposed to know these words?  Why isn’t this multiple choice?  I’m POSITIVE that wasn’t on the study guide.

Diagnosis:  After speaking with her for about 30 minutes today, I have a better idea of what this all means.  My kidneys are being attacked; they’re inflamed.  They still work like proper kidneys, so that’s very good news.  We need to treat my lupus to prevent damage.

Treatment: They’re holding off on any chemotherapy.  Sterility is a possibility in the type I would have to take, and they don’t want to take away any chances I may have to reproduce.  (My future children are vital for the continued improvement of humanity.)

I’m going to be put on a high dose of steroids and an immuno suppressant called CellCept.  This drug is typically used for transplant patients.  They’re the types of drugs with a list of side effects 12 miles long, so we’re in for a fun ride, everyone.

They’re going to see how well I do on these drugs in three months, and then reassess whether or not I’ll need chemotherapy.  (They’re crossing their fingers for “no.”)

If you want to be as confused as I am: I have class III, IV, and V of lupus nephritis.  That’s right; you can have more than one at the same time.  Class VI is the worst class- it means you’ve got permanent damage; I do not have class VI.  Honestly, I still don’t understand what all the classes mean.  If anyone knows, feel free to share your kidney knowledge with us.

This site was helpful to me if you want to learn more.  Do not go to Wikipedia.  It’s so unclear that I suspect my doctor had a hand in writing it.


French Word of the Day: le rein (luh ren)- kidney

I don’t generally like talking about my illness when I’m doing poorly.  No one wants to think about it when they’re not doing well.  I don’t really want to talk about it, but I know everyone is curious, so I’m writing blog posts instead.  That way I can just send people the link and we don’t have to discuss it.

According to my reader stats, a ton of people checked this page yesterday, so I have a feeling you were all expecting this.

My lupus is doing what it does best, attacking things and causing general mayhem.  Right now, it’s focusing on my kidneys.  They’re currently doing whatever it is that kidneys do properly (obviously, biology was my best subject in school), but some of my levels indicate that there is something wrong with them. I had a biopsy Friday to make sure the cells aren’t damaged.

I’m not quite sure who said, “Your organ is damaged?  Let’s take a piece of it out! That sounds not at all crazy or detrimental to your health!”  But I’m an English major.

They took a really, really long needle that is longer than my torso (I made them show it to me afterwards… how they didn’t go right through me, I’ll never know), and stuck it in my back.

I literally got stabbed in the back by doctors.

Obviously, food is always my biggest focus.  I wasn’t allowed to eat for 6 hours before the surgery, so my first question when I was finished was “When do I get to eat again?” Personally, I think the recovery room should have had a buffet table.

The hospital took their sweet time in feeding me, but my parents snuck me fruit and pain au chocolat.

That’s why I take them places.

I should have taken them up on their offer to get fast food for me, because this is what qualified as food at the hospital:

Cream of Goop

I believe this paste is typically used in childrens’ art projects.

Everything went well for the biopsy.  I did have a little internal bleeding, but nothing that’s going to require surgery.  I’m not allowed to play any contact sports for the next two weeks.  (There goes my successful rugby career!)

My doctor also said I’m not allowed to “jump dance”.  I will find a way to dance without jumping or moving my torso… just wait and see.

What’s Next: They’re not certain, but probably 6 months of IV chemotherapy.  I’ll keep you updated.

Thanks to everyone who visited me and brought me food and flowers!  Much appreciated 🙂

Pain Au Chocolat Count: 2- one from my parents, one from Allison and Paul