11.08.2010

You know that saying "Just what the doctor ordered"?

Well, I'm thinking my doctor didn't order this, because I could tell he was surprised by my test results too when I saw him for my follow-up appointment today.  There's no rhyme or reason why my protein is going up...nothing's changed for me physically...he lowered the dosage of one of my meds so I get fewer headaches, but that's about it.
So, what's the plan for me?  Well, I guess I'm going to continue taking tacrolimus (which is the immunosuppresant that we're using in order to stop the progression of the kidney disease) for 2 more months.  Why 2 months you ask?  Because 1 study done in 2004 with a whopping 16 patients used 6 months as a baseline minimum.  This is what I'm dealing with...I mean, in my engineering brain, there's no logic to this.  I've been on this medication for 4 months, and my protein has gone up from 4.7 grams to 10.6 grams.  I don't understand why I'd stay on this medication, but I will...just because.  I'm also getting my blood pressure medications increased.  My doctor wants it so low that I'm nearly falling on the floor (sounds great, right? Friends, please keep an eye on me...this freaks me out).
I'll do another 24-hr urine test in January, and if the results aren't what we want (in otherwords...SOME reduction in my protein), then I'll stop taking the tacrolimus and slowly wean off the prednisone again.  At that point I'll be out of options, and will be waiting for my kidney function to decline.  We'll just try to maintain my blood pressure as low as possible in order to ease up on the work my kidneys are doing.  The good news (albeit still a bit confusing to me) is that my kidney function is really good.  I'm only at Stage 1 of kidney disease (out of 5), so I've got a ways to go, but there is no telling how quickly I'll get there.  My kidneys are working very hard to filter everything right now, and with 10 grams of protein loss, they're function will decline faster, but how fast that is is hard to tell.
And I didn't even discuss the 2nd baby option, as it just seems like it's not an option and I can't bear to hear/deal with that right now...just too painful for me.
What I'm most frustrated about, I think, is that I know no more now than I did before I went into my appointment.  There's a plan, but not a great one.  No one has any idea of what's going to happen to me or when.
And I'm angry.  I thought about it today, and Izzy's life growing up could very easily be clouded by my disease.  How do I explain to her that Mommy's sick?  How do I deal with that?  It's not fair to her...I wouldn't wish this on anyone, but especially not my little girl.  No, I'm not angry...I'm pissed.  I'm pissed because my doctor doesn't get how freakin' tired I am...don't tell me it's not because of the protein spillage because you're data says it's not...LIVE IN MY BODY FOR A WEEK and tell me it's not related.  It's an indescribable tiredness, that's all I can say.  He could be right about one thing though...and that's that I've been dealing with a chronic illness for 5 years...seriously for 18 months, and it's starting to wear a little thin.  The limbo...the waiting for the other shoe to drop...it's exhausting.
Thankfully, my doctor knows that he doesn't know it all, and has suggested (again) that I get a second opinion.  He trained at Ohio State, and he's going to set me up with one of his mentor's there to discuss my case.  Thing is...he's already seen my files.  He's not going to tell me anything different.  My doctor is hoping that he'll know of a study or clinical trial that I could get involved with..My question, and Joacim's, is "Can't he just call him and ask?  Rather than me driving there to hear the same schpeel?"
So, in light of that, I've put in appointment requests at both The Cleveland Clinic and Mayo Clinic.  I find it hard to believe as I type these words that my condition requires Mayo, but I guess it does.  My grandpa went to Mayo when he was fighting cancer...THOSE are the patient's that I think of when I think of Mayo, but at this point, I'm out of options.  They may not be able to tell me anything different, but it's a whole different set of eyes on my problem, and both centers have EXCELLENT reputations, so I gotta give it a shot.  Still seems  ridiculous though.

3 comments:

Sarah said...

Who's with me when I say, "2010? You can SUCK IT." :)

I'm sorry for you, I'm sorry for me. But I feel for you. Kids need grandparents, but they NEED their mommy. Sounds like you're holding up your end of the bargain, just need to keep advocating yourself with those doctors.

Lacy Park said...

I'm so very sorry, Jenn. I can't imagine the pain and roller coaster of emotions you are going through.

You are in my prayers. Seriously, you need some prayers, sister....

Lacy Park said...

My email is Lacy.park@gmail.com

Love to hear from you!

Lacy