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.

Warfarin and Kidney Disease : FSGS Sucks

Just another reason in a litany of many that FSGS sucks.

http://www.sciencedaily.com/releases/2009/02/090218181806.htm

A friend of mine sent me this this morning, and it's VERY interesting.  I just started warfarin therapy a little more than a month ago, and I'm VERY sensitive to dosing and eating....we just can't seem to stabilize it.  This study is helpful and is something I'll bring to my doctor visit.

My Mayo Visit : FSGS Sucks

I had my most recent visit at Mayo last Friday.  Normally I blog about it right away, but this time was different, and I needed some time to digest and figure out my next steps.  To make a long story short, nothing's working, and I'm getting sicker.  All of the important numbers are going in the wrong direction.  I'm spilling 12+ grams of protein, my albumin is back at 1.8, my creatinine is up to 1.9, and my GFR has fallen to 31.  So now I'm teetering between stage 3 and stage 4 kidney disease.

Sadly, this wasn't the worst part.  I actually wasn't even surprised by the numbers...you get kind of numb to them after awhile.  It's when my doctor said that no one would transplant me because I'm too sick and that my FSGS would come back right away that my heart hit the floor.  I was shellshocked.  I started crying.  I saw my short life pass, and then I saw Izzy and I lost it.  I felt like 30 years of my life had been taken away from me with a few words.  I had always figured I'd need 2 transplants, and hoped each one would last 15 years.  But those words changed that for me.  I know that the likelihood of me living the rest of my life on dialysis is small, at least with today's technology

I've never been told that I wouldn't qualify for a transplant before.  I have ALWAYS assumed that dialysis was the next step.  I'm not exactly sure of everything he said after that, but it was something to the extent that it was because my albumin was so low and my protein was so high that it just wouldn't happen.  I cried, I wallowed, I told Joacim and shell shocked him too.  And then I had to put the thought out of my head, because I couldn't function.  There are few things worse than getting news like that late on a Friday and having a weekend to digest (or in my case, imagine the worse).  And don't get me wrong...I appreciate the honesty...I harbor no ill will or feelings against my doctor, because he treats me with respect and wants me to know everything that's going on.

So, for now, we're changing things up just a bit and adding a few things.  We're spreading out the prograf dosage throughout the day (so instead of 5mg 2x/day, I'll take 3mg in the morning, 3mg at noon, and 4mg at night). I think he's doing this in the hopes that I'll be able to tolerate more eventually, because right now, anything about 10mg gives me AWFUL headaches.  We've also added a phosphorus binder to the equation because it's stupid high (5.9 where the range is 2.5-4.5).  Too much phosphorus causes a sensation like bugs crawling all over your skin, and it's miserable.  Add that in with my existing eczema and the change in seasons, and I'm an itchy mess.  Cross your fingers that this will provide some relief.

The biggest thing for me is that the doctor has now put me on Coumadin, which is a blood thinner.  This one terrifies me.  The point is to make my blood thinner to prevent DVT or a pulmonary embolism.  I do not currently have a clot that I know of, but this is a preventative measure due to the high amount of protein that I'm spilling.  There are several things about this med that are life-changing:
1.  No more alcohol, which made me look ridiculous being the ONLY person not drinking a beer when we were having an event the other night.  Yuuuuuummm....iced tea for me please.
2.  I have to have my blood drawn every 2-3 days until we get my dosage stabilized.  This is causing some scheduling difficulties with work.
3.  I can no longer drink tea, or cranberries because it has a high amount of Vit K in it, which can counteract the Coumadin.
4.  I could bleed to death by brushing my teeth (okay, this one is probably extreme, but have you ever read those papers from the pharmacy??????) which is why I have to wear one of these 24-7 now.

my medical alert bracelet

I also had to go get a chest x-ray because last Tuesday, I felt like I was breathing through a wet sponge.  My eyes were all puffy and I felt pretty run down, which probably indicates that my lungs are filling with fluid.  Awesome.

waiting for my chest x-ray

Part of me is still TOTALLY FREAKING OUT about all of this.  But I was able to share it with my friends on my FSGS group on Facebook, and they empowered me again to do something.  You see, sometimes it's all about feeling in control, even if the outcome doesn't change.  So I'm trying to work now to see what the next ten years of my life look like.  I'm seriously studying dialysis now because my GFR is dropping quickly..it's gone from 52 to 31 since April.  I know part of that is medicine-caused, but not sure HOW much.

I'm also going to go see another doctor to help me understand what my options are.  I've spoken to him on the phone before, so this isn't about new treatments or anything, but about what my options are going forward.

Dr. Fervenza is also starting another clinical trial in December, which I'll take part in. It's a blind study, so I don't know if I'll get the drug or a placebo, so it may not do me a bit of good, but clinical trials help others, so I'm game for most anything.

Most importantly, I've been able to talk to 2 of my best friends in the world, and it's made a huge difference. They are my support, my voice of reason, people that let me (and sometimes encourage me) to be weak, yet understand what makes me tick and why I can't.  They're also heavily in my corner for getting a housekeeper, which WILL happen after Christmas.

My thoughts might be rambling, as I predicted, but I think I got put what I could for now.  I can't go down the rabbit hole of Izzy and Joacim and how this affects them.  I honestly can't handle it now, and since nothing is going to change RIGHT NOW, I'm ok with that, an I think they are too.  So, good night all, thanks for reading, and thanks for supporting me.