8-1-12/Bad News

One of the nephrologists at Yale called today. It’s never good when the doctor calls instead of one of the nurses.

 

There is already damage to my new kidney. They know I have BK Virus, but it is unclear whether the damage is directly related to that alone, however.

 

The thought is that I might have “mild rejection” that was not really deductible without the biopsy. If that is the main cause, then the BK might not have done much or any damage to the kidney yet. That’s the best case scenario.

 

The second best case scenario is that the BK Virus is moving aggressively and does explain the damage to the kidney.

 

The worst case scenario, and what they fear, is that both are at play.

 

The problem either way, and definitely if both mild rejection and BK Virus are hurting the kidney is that the treatment for one aggravates the other condition. If they lower the immune system to treat rejection, the BK Virus will likely get stronger and be in my system longer. If they increase my immune system to treat BK, then rejection becomes worse, or more likely at the least – assuming it’s not happening now.

 

It’s a very tricky and crappy balancing act. The doctor said to hope for just rejection at this point. That can be treated well and quickly. Either way, if that’s hurting the kidney, it needs to be dealt with. BK is more of an intermediate to long-term threat. Rejection is an immediate threat.

 

It seems every few weeks, they are shortening the life expectancy of the new kidney. We had originally hoped for 15+ years. Then it was 10 years. Now it’s much less. Additionally, with my creatinine at 2.2-2.3 now, and evident damage to the kidney, the best I can hope for is to stabilize at 35-40% kidney function. That leaves much less margin for error on a go forward basis. Worse, if the damage continues while they try to balance the (potentially) two culprits, that margin of error shrinks. We know it CANNOT get better.

 

I am getting really sick of being in the less than 3-5% range. 1-2 people  a year at Yale (out of 100+ transplants) has to deal with this scenario. 1% have a ureter revision. 2,000 people a year get FSGS. Catch my drift?

 

I asked about the FSGS re-occuring and the doctor reiterated that was a long-term problem and there was no reason to even worry/think about that now. Additionally, the results on that won’t be in until the end of the week at the earliest.

 

In the meantime, my mother is devastated. I spent much of today consoling her. She hasn’t made peace with this situation at all.

 

Me, I am basically apathetic at this point. What can I do? What’s the worse thing that happens? I die? In my mind what I have been going through pre and post-transplant is worse than that. I imagine my feelings might change, but overall, I am distancing myself more and more from this cluster-f***.

 

We’ll know more tomorrow and I will update. I am on call to be at Yale in the meantime.

 

I have three songs for today. The first two are both off Slash’s (of Guns N’ Roses fame) second album (released recently). One seems to have to do with an unnatainable love, while the other is more a macro-political song. However, I think both are applicable today. The last is by Alice in Chains.

 

No More Heroes by Slash

 

Took a shot in the dark
Though the aim was true
Still it missed the mark
As we wait for a hero we can’t find
Now I know, now I realize
It’s a hard line
Once you cross you’re on your own
But I won’t lie, I’m not satisfied
We can’t wait much longer

When your heroes, turn to the enemy
And there’s nothing left to hold
When your heroes, give only apologies
I won’t deny it leaves me cold

Once again, you let us fall
Still you ease our minds and are sure to stall
In the end, everything’s gonna be alright
But they won’t
Now I realize, these are hard times
We can’t fight them on our own
But I won’t lie, I’m not satisfied
Who will save tomorrow?

When your heroes, turn to the enemy

And there’s nothing left to hold

When your heroes, give only apologies
I won’t deny it leaves me cold

Hope we’re still alive
Still alive
Oh, oh, oh
We’re still alive
Still alive in the end

(Solo)

Now I know
Now I realize, these are hard times
We can’t face them on our own
But I won’t lie, I’m not satisfied
Who will save tomorrow?

When your heroes, turn to the enemy
And there’s nothing left to hold
When your heroes, give only apologies
I won’t deny it leaves me cold

When your heroes, turn to the enemy
And there’s nothing left to hold
When your heroes, give only apologies
I won’t deny it leaves me cold

If we’re still alive
Still alive
Oh, oh, oh
If we’re still alive
I would never doubt you again

 

Far and Away by Slash

Across the long last great divide
The distant longing never dies
And all the pain of a dream that was never known
Never fades, no
That’s alright, someday I’ll find you
I tell myself most every night

You seem so far and away
Another life, another time and place
Oh, oh, if only I could find you
So far and away
It’s something lost I never will replace
It seems so far away

A love I’ll never come to see
And though I’ve tried can’t let it be
My God, it aches for the longing it only grows
Every day
I only bleed when I’m all alone
They say in time give it tomorrow
But to me that’s just a lie
You seem so far and away
Another life, another time and place
Oh, oh, if only I could find you
So far and away
I’m waiting on a miracle today
It seems so far away

(Solo)

So if you hear this last refrain
I hope you know that I still wait
I can’t let go, all I need is a miracle
And today all I need is a miracle
Oh, oh, oh, yeah

It seems so far and away
Another life, another time and place
Oh, oh, I hope these words will find you
So far and away
It’s something lost I never will replace
No, I’m begging for a miracle today
Hey, hey, hey

(Solo)

And I wait so long
And I wait so long
So alone, so alone

 

Rooster by Alice in Chains

 

Ain’t found a way to kill me yet
Eyes burn with stinging sweat
Seems every path leads me to nowhere
Wife and kids household pet
Army green was no safe bet
The bullets scream to me from somewhere

Here they come to snuff the rooster, aww yeah, hey yeah
Yeah here come the rooster, yeah
You know he ain’t gonna die
No, no, no, ya know he ain’t gonna die (x2)

Walkin’ tall machine gun man
They spit on me in my home land
Gloria sent me pictures of my boy
Got my pills ‘gainst mosquito death
My Buddy’s breathin’ his dyin’ breath
Oh god please won’t you help me make it through

Here they come to snuff the rooster, aww yeah
Yeah here come the rooster, yeah
You know he ain’t gonna die
No, no, no ya know he ain’t gonna die

Comments
3 Responses to “8-1-12/Bad News”
  1. Teepee12 says:

    We cannot begin to tell you how much we think about you and wish there was something we could do or say that would make it all come right. Just know,we care. We are thinking about you. We worry about you. I’m not going to send you any stupid cliches, just lots of love. Marilyn and Garry

    • dakski says:

      Thanks guys. Unfortunately, that’s all most people can do, whether they realize it or not.

      Thanks for the thoughts and caring!

      David

      • Lillian Rosenzweig says:

        I wish I could just wash you clean of all these problems, but all I can do is pray and hope.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: