If you don't like profanity, you may wanna pass this one up.

Sooooooo....things aren't looking so good in the transplant department for one apparently "too healthy" person...yes, me.  And sometimes it's incredibly difficult for me to organize my thoughts, so bear with me if I'm ramble-y and sounding confused (well, that might be because I probably AM confused, but I digress).

I called the clinical trial coordinator today to report to her a potentially adverse effect, being that I've had my period for 3 solid weeks now, and am heavily clotting (gross, and probably too much info, but too bad, it's my blog :).  This has happened once before, which the clinical trial coordinator mentioned.  She also noted that I wasn't on the drug at that time, in other words "not my problem".  Ugh.  My doctor was also in the room with her, and they put me on speakerphone (which is a wonderful yet incredibly annoying invention, don't you think?) and I told Dr. Fervenza what was going on.  He wanted me to change my warfarin dosage because that's what he thinks it is, and started rattling off some dosages.  Do doctors seriously not understand that it's not easy to change dosages???  That I can't take a 3mg pill and make it 1mg????????  FOR THE LOVE OF GOD AND ALL THAT IS HOLY WHY THE HELL CAN'T ANYTHING JUST BE EASY AND FUCKING NORMAL?????????????????????????????????????????????

Whew!  Sorry about that...had to get that out.

Anyway, I told him about my severe swelling (I'm up about 15 pounds from last week...I'm seriously at the heaviest I've ever been), and about the fact that I can hardly sit and breathe because of all of the water pressure on my stomach and chest.  I've had training the last 2 days, and a sales meeting the day before that, and it's absolutely wrecked me.  I wore my compression stockings today just so my feet didn't explode, but it made my size 10 pants feel like leggings because all the water just moved up.  Awesome, right?    So he told me to double my dose of diuretics tonight and tomorrow morning, and then to give him a call back to tell him how much I'm peeing.  I bet no one else gets to call their doctor and talk as much about peeing as I do...jealous, aren't you?  I'm all sarcastic and tongue-in-cheek tonight because I just have to be for fear of losing one of the last little threads of sanity that I feel like I have right now.

Dr. Fervenza ALSO mentioned that he spoke to Dr. Matas (transplant surgeon at the U) and let me paraphrase here when I say that they both think I'm nuts.  Essentially, what I heard was that both of them agree that it's not a good idea to give me a transplant.  And Dr. Fervenza mentioned something about the fact that he's keeping me in mind because he's talking to another company that has a potential new drug.  Now while I appreciate the fact that he's "keeping me in mind", I'm done being a guinea pig.  No more drugs...no more "let's see if this will work"...I'm done.  D.O.N.E.  I don't want to hear about another drug because, let's face it, it's hopeless.  4 years of spilling this much protein with no changes for the better, albumin constantly going lower, swelling always worsening (have I mentioned the fact that I'm too healthy to transplant?????).

So, hopes crushed unofficially.  I'll officially let you all know I'm crushed when I'm officially told "no".

I called and made an appointment with my PCP today because I need a refill on my crazy pills, plus I need to talk to her about the cyst on my hip (did I mention that anytime???  oh yes, I've got a cyst on my left hip that was discovered during my MRI....great, right?), as well as the bleeding.  I called the coumadin clinic that manages my INR, and they don't think that there's any correlation between my INR and the bleeding (and I trust them more than my nephrologist on this one), but I'll go in and get it checked again on Friday when I go to see my PCP.  She'll probably send me back to a useless OB/GYN who will see that I'm coumadin and then blame it on that.

Do you all see the constant battle that this is?  Do you understand how hard it is for people that are chronically ill that have multiple symptoms/issues...who the hell do I go to for an issue?  My nephrologist, my PCP, my OB, a surgeon, the coumadin clinic?????  Somebody tell me who, please.

I've got kidneys that suck but I'm apparently I'm not sick enough for anyone to take me seriously, and the fact that my quality of life is at a big fat zero is of no concern to anyone.  Anyone.  I have a cyst on my hip that was discovered during an MRI, but my nephrologist doesn't "think" that they'll do anything about it, so he's not going to either, meanwhile I'm always in pain.  I'm bleeding, constantly, for 3 weeks, clotting, and probably becoming even MORE anemic, but my OB blames it on my coumadin because she's too damn lazy/scared/not skilled in chronic issues to think it could be anything else.

For fuck's sake...I give up.  I'm fed up...fucking fed up with the system, fucking fed up with these kidneys and how fucking hard it is to do anything, and how fucking much energy and time it takes to try.  I am the best advocate I have, and I'm pretty damn good at it, but I'm so tired of fighting...soooo sooooo tired.