7-20-12/Hope and Clarification & Life Expectancy

I had an ultrasound at Yale today and it looked pretty good. They want to repeat Tuesday, but if that looks unchanged, then we can celebrate. This seems to imply that the second surgery (the ureter revision) was a success, making the transplant a success as well.

 

My creatinine is 2.2 – the highest it has been post-transplant, but it’s been there before. There is still hope that things stabilize, but even if that happens at a high creatinine level, it’s not the end of the world.

 

I have completely stopped wetting myself, indicating that the stent was the culprit and nothing more serious was at play.

 

I spent a long time with the head nephrologist today discussing BK Virus.

 

First, some points of clarification. I have it in blood – which 20-25% of people do after transplant. It is not clear whether it is in the kidney yet. I will be biopsied soon and that will be more conclusive. In about 60% of cases the virus does reach the kidney – or about 10-15% total.

 

Yale is exceptionally confident they can manage the virus and eradicate it. They also do not anticipate an acute rejection episode. However, there are some caveats.

 

First, it can take up to year or so to eliminate the virus. Secondly, it can become problematic for me to go back up on the immune suppressants – for fear of reactivating BK. Third, the disease can do some damage even in a year.

 

The question becomes how does all this affect the long-term viability of the transplant?

 

The answer is not so clear. The reduced immune suppressants can lead to a shorter life of the kidney, as can the virus. Either way it seems there will likely be some effect on the longevity of the new kidney. How much is hard to quantify.

 

The nephrologist argued that given my life expectancy I will likely have a second transplant. He wants this one to make it 10+ years and assumes the second will last the rest of my life.

 

I have neglected to discuss life expectancy before, partly because it is depressing.

 

Basically, I had FSGS (a form of kidney disease) for 9 years. That did unquantifiable amounts of damage to my body. Secondly, I am on immune suppressants and have a foreign organ in my body. That does unquantifiable amounts of damage.

 

The hope is that I make it another 30+ years or so. I am 32 now and the hope is to make it to 60-65.

 

Many people seem to think transplantation is a fix, and not what it is, a band-aid – a way to stop the bleeding and imminent death.

 

It is a treatment option – not a cure!

 

I don’t know if it makes them feel better, or if they are just ignorant. Either way, if you have kidney disease and or/have been transplanted, CARPE DIEM! Enjoy the time you do have – as you already know – it’s precious.

 

I close with two Bon Jovi songs. “Everyday” and “It’s my Life.”

 

“Everyday”

 

I used to be the kind of guy
Who’d never let you look inside
I’d smile when I was crying
I had nothing but a life to loose
Thought I had a lot to prove
In my life, there’s no denying

Goodbye to all my yesterdays
Goodbye, so long, I’m on my way

I’ve had enough of cryin’
Bleedin’, sweatin’, dyin’
Hear me when I say
Gonna live my life everyday
I’m gonna touch the sky
And I spread these wings and fly
I ain’t here to play
I’m gonna live my life everyday

Change, everybody’s feeling strange
Never gonna be the same
Makes you wonder how the world keeps turning
Life, learning how to live my life
Learning how to pick my fights
Take my shots while I’m still burning

Goodbye to all those rainy nights
Goodbye, so long, I’m moving on

I’ve had enough of cryin’
Bleedin’, sweatin’, dyin’
Hear me when I say
Gonna live my life everyday
I’m gonna touch the sky
And I spread these wings and fly
I ain’t here to play
I’m gonna live my life everyday
Hit the gas, take the wheel
I’ve just made myself a deal

There ain’t nothing gonna get in my way
Everyday

Goodbye, so long, I’m moving on

I’ve had enough of cryin’
Bleedin’, sweatin’, dyin’
Hear me when I say
Gonna live my life everyday
I’m gonna touch the sky
And I spread these wings and fly
I ain’t here to play
I’m gonna live my life everyday

I, oh I, oh I, I’m gonna live my life everyday
I (gonna touch the sky), oh I (spread these wings and fly), oh I
I’m gonna live my life everyday

 

“It’s My Life”

 

This ain’t a song for the broken-hearted
No silent prayer for the faith-departed
I ain’t gonna be just a face in the crowd
You’re gonna hear my voice
When I shout it out loud

[Chorus:]
It’s my life
It’s now or never
I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just wanna live while I’m alive
It’s my life

This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow’s getting harder make no mistake
Luck ain’t even lucky
Got to make your own breaks

[Chorus:]
It’s my life
And it’s now or never
I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I’m alive
‘Cause it’s my life

Better stand tall when they’re calling you out
Don’t bend, don’t break, baby, don’t back down

[Chorus:]
It’s my life
And it’s now or never
‘Cause I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I’m alive

[Chorus:]
It’s my life
And it’s now or never
‘Cause I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I’m alive
‘Cause it’s my life!

Comments
3 Responses to “7-20-12/Hope and Clarification & Life Expectancy”
  1. The Little Sister says:

    1st Off – I love you David, you’re a true inspiration, and I have a happy healthy kidney waiting for you when you need it.

    2nd – Please encourage everyone you know to support stem cell research. Hopefully sometime in the next decade or so, Doctors will be able to grow your own kidney. This would be amazing for the patients, but also great for the health insurance companies…without fear of rejection, there would be no need for immune suppressants, additionally people wouldn’t die waiting for an organ…

    • dakski says:

      Sis,

      You are a sweetheart.

      We actually had a long talk with Yale about stem cell research. At the moment, they are more optimistic that they come up with technology to trick the body into accepting a new organ than that they can grow a new one. Kidney’s are complex and we still don’t understand much of what they do. Thus, replicating one can potentially be more problematic.

      I hope you are right and I’ll never have to ask, but just in case, stay healthy kiddo!

      Love you.

      David

  2. Trish Collins says:

    Hey David! I just want you to know that I’m thinking of you and praying for you. I’m hoping things keep looking up.

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