FSGS Sucks...it just does

Izzy and I headed to Cincinatti on Tuesday for what I thought would be my last in-person appointment from the clinical trial.  Luckily, I get one more visit with these amazing people!!!

It was a good visit...did some psychological surveys, turned in the rest of my drugs that I couldn't take due to stopping the Humira, and just talked.  Barbara is A-MAZING with Izzy...she had her eating out of her hands within minutes.  And I LOVE that these people talk to me...to see how I'm doing both physically and emotionally.  I truly, truly believe that they care, and I can't tell you want a difference that makes.  THEY care about my quality of life.  As soon as I start talking about my leg swelling, Dr. Goebel hops on the computer to see how high I can go on my diuretic dosages.  Mind you, he's not the one that prescribes these, but he gives me information to take back to my nephrologist to help me.

The swelling is getting old.  I'm tired of talking about it.  I'm sure you're tired of hearing about it.  I think at some point pretty soon I'm going to have to come to the realization that this is not going away...no more drugs or anything is going to "fix" it.

Dr. Goebel commented again on how well adjusted I am, considering how ugly this disease is.  I thanked him, because, for starters, everyone wants to be acknowledged for being normal :)  And secondly, it gives me the motivation to keep going.  This doctor has seen the worst, and he knows the struggles that we go through, so that makes the meaning much more.

I'm embarrassed to say this, but here goes, because I'm wondering if anyone else has felt this way.  Ok, so I've got this shit disease that's getting progressively worse.  I've exhausted drug therapies, tried a clinical trial, spend 100% of my time swollen and achy...that all sucks.  But I know people out there who have it SO much worse than me.  However, I often wish that these things would just get it over with and fail.  My neph's main goal is to keep my kidneys as long as possible, and I'm thinking, "Why the hell would I want to do that???"  I mean, this is no picnic, people.  I put on a happy face, I bitch and moan and get it all out, but I still suffer.  Daily.  The extra water weight I carry around sometimes becomes unbearable.  I feel sluggish, wiped out.  I'm frustrated that I can't wear the clothes/shoes that I want to.  I'm angry because I'm too tired to work out, which leave me little outlet for stress.  And, let's face it, these buggers aren't going to get better.   I often wish they would fail and I could just get a new kidney.  There.  I said it out loud.  I feel better.  I don't care if it's rational...I don't care what anyone else thinks.  It's honestly what I think.

I think Dr. Goebel gets that.  He sees the changes in kids after transplants, so he knows the possibilities.  Now, I'm not going to do anything ca-razy...no worries there.  I'm not an idiot.  Let's just get this over with.

Judging by my lab results that I received this evening, maybe my kidneys are listening.  I compared my numbers with those from 6 months ago, and everything is moving in the WRONG direction (well, wrong if I want these kidneys to get better...guess I should clarify after my confession).


                                             May '11 Dec '11 Units            Ranges
BUN                                         16              23  mg/dL            6-19
Albumin                                     1.9             1.7             g/dL            3.8-5.2
Blood Creatinine                        0.7             0.9            mg/dL           0.4-1.1
RBC                                         4.02             3             mill/mol          4.2-5.4
Hemoglobin                               12.1            9.1            g/dL              12-16
Hematocrit                                35.6             28              %                37-47
LDH                                         250             312            U/L            118-273
Urine Creatinine                        56.8                            mg/dL
Total Protein (random)             274.6                           mg/dL             0-12
Protein/Creatinine Ratio             4.8                             mg/mg           0.0-0.1
Creatine Kinase (CpK)                                599           U/L             30-223

Now, I know that these numbers don't mean much to most people, so I'm gonna try to explain it as easy and as simply as I can.

BUN - measures nitrogen (urea) in the blood.  Urea is a by-product of metabolism of proteins in the liver, and the kidneys should remove it.  An increasing BUN means that my kidneys are not able to remove it as well, indicating decreasing kidney function.
Albumin - essentially, the reason I'm swollen.  The vessels in my body can't hold the water in, so it leaks out into my interstitial cavities (hence, the ridiculous edema).  Lower albumin means more swelling.
Blood creatinine - measurement of waste products in my blood
RBC/hemoglobin/hematocrit - all related to red blood cells in the blood, indicating that I'm anemic now
LDH - measure to check for tissue damage
Creatinine/urine numbers - harder to explain, but you can see from the ranges that I'm WAYYYY out of 'em
CpK - another tissue damage indicator....another HIGH OUT OF RANGE number.

This all sucks. I don't know what it all means, and I probably won't have any clearer answers when I show my neph.  He'll blow it off and be vague, and say something like, "Yeah, they're getting worse". Which will be TOTALLY not helpful to me.  Piss on it for tonight...I'm going to bed.

Please listen : FSGS Sucks

I had my last training session for NKF mentoring tonight, and one of the trainers read part of this poem.  I looked up the rest on Google because this poem captures what I've felt so often when dealing with FSGS.  Please take the time to read, and share.  I don't know the author, and apparently neither does Google, but if anyone finds out, let me know and I'll credit the author :)

Please Listen

When I ask you to listen to me
and you start giving me advice,
you have not done what I asked.
When I ask you to listen to me
and you begin to tell me why
I shouldn't feel that way,
you are trampling on my feelings.
When I ask you to listen to me
and you feel you have to do something
to solve my problem,
you have failed me,
strange as that may seem.
Listen! All I ask is that you listen.
Don't talk or do - just hear me.
Advice is cheap; 20 cents will get
you both Dear Abby and Billy Graham
in the same newspaper.
And I can do for myself; I am not helpless.
Maybe discouraged and faltering,
but not helpless.
When you do something for me that I can
and need to do for myself,
you contribute to my fear and
inadequacy.
But when you accept as a simple fact
that I feel what I feel,
no matter how irrational,
then I can stop trying to convince
you and get about this business
of understanding what's behind
this irrational feeling.
And when that's clear, the answers are
obvious and I don't need advice.
Irrational feelings make sense when
we understand what's behind them.
Perhaps that's why prayer works, sometimes,
for some people - because God is mute,
and he doesn't give advice or try
to fix things.
God just listens and lets you work
it out for yourself.
So please listen, and just hear me.
And if you want to talk, wait a minute
for your turn - and I will listen to you.