7-16-12/BK Virus

Today was supposed to be a day I didn’t hear from Yale. I had clinic scheduled for Thursday and my cystoscopy got moved to Wednesday. So other than the delight of waiting for that procedure on Wednesday things were supposed to be low-key.

 

Not so much. Clinic called today and left a message as I was taking a nap. I have tested positive for BK Virus.

 

I did some reading and pieced together what I have heard from clinic in the past as I cannot speak with them until tomorrow at the earliest.

 

BK Virus is a virus that is found in 80+% of people, but lies dormant in those with a healthy immune system.

 

5-8% of kidney transplant recipients (from what I have read) have the disease become active. I am one of those lucky few.

 

Here’s the best part – it attacks organs, namely the kidney. If untreated, it leads to graft loss in 30-60% of cases. Regarding that, don’t you love how researchers say “graft loss” as opposed to what it is – a new kidney in a human being. Graft loss = transplanted kidney failure.

 

So of course they will treat it right? Well, the only real way to treat it is to have the body’s immune system repress the virus. How do you do that? Good question. You reduce the immune suppressants that are preventing rejection in order to hopefully get rid of the BK without having the body reject the kidney.

 

Sounds like a fun game, huh? The only problem is it’s my F’ING LIFE they are playing with. Not a mere “graft.”

 

I will write more about it when I know more. However, what I have read is not painting a rosy picture.

 

In the meantime, my stent comes out on Wednesday and we’ll see soon if the second surgery (the ureter revision) was indeed successful.

 

My song for today is “Comfortably Numb” by Pink Floyd. I think it’s self explanatory.

 

Hello,
Is there anybody in there?
Just nod if you can hear me
Is there anyone home?

Come on
Now
I hear you’re feeling down
I can ease your pain
Get you on your feet again

Relax
I’ll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain you are receding
A distant ship’s smoke on the horizon
You are only coming through in waves
Your lips move
But I can’t hear what you’re saying

When I was a child I had a fever
My hands felt just like
Two balloons
Now I’ve got that feeling once again
I can’t explain
You would not understand
This is not how I am
I… Have become comfortably numb

O.K.
Just a little pin prick
There’ll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it’s working
Good
That’ll keep you going through the show
Come on
It’s time to go

There is no pain you are receding
A distant ship’s smoke on the horizon
You are only coming through in waves
Your lips move
But I can’t hear what you’re saying

When I was a child
I caught a fleeting glimpse
Out of the corner of my eye

I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I… Have become comfortably numb

Comments
5 Responses to “7-16-12/BK Virus”
  1. Teepee12 says:

    Reblogged this on Serendipity and commented:
    What does your life become when your health goes to pieces? It takes over your life, it becomes your life. It makes you realize how fragile life is and what a thin, delicate line lies between “everything is fine” and everything going to hell.

  2. tjzager says:

    F***. I am so sorry about this news. Please let us know what your docs say when you talk with them.

  3. Gini says:

    Hi David….UGH!!!!!
    I wanted to tell you that I appreciate your association of your life with music. I like music, I listen to music but I usually only listen to the beat…your pointing out the words helps me to learn. Thank you.
    I may be foolish, but I choose to be positive….this too shall pass. I hope I am right.

  4. Harvey Mysel says:

    David…t[he information you described about BKV is unfortunately correct. I was transplanted 5 years ago and contracted the BKV 1 year later. For the past 4 years we’ve balanced my meds to try to keep the BKV under control…earlier this year I started the process to find another donor.

    You could read about my story at: harveyskidneykampaign.com

    And my non-profit organization, the Living Kidney Donors Network that helps people who need a kidney transplant: http://www.LKDN.org and http://www.facebook.com/LivingKidneyDonorsNetwork

    • dakski says:

      Harvey,

      I am sorry to hear you are in need of another kidney.

      My thoughts are with you.

      I looked at your site and encourage others to do the same.

      David

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: