[Ernie Kully]

Hi Charlene,

 

It’s been a while.  I hope you doing as well as possible.  Given that I have had a recent exacerbation that brings me closer to having to make the decision, this is a timely topic for me.

There are a couple of issues for me regarding a transplant.  As others have said, it is NOT a cure, it is, at best, a temporary respite (as so well described in James’ response above).  Having recently gotten divorced and moved to Florida, my support system is tenuous at best.  Yes, my mother is here, but she is 84, has her own IPF to deal with, and is in no position to help me during surgery/recovery in any meaningful way. My brother is also here, along with his wife, but they also have health concerns of their own.  I still have (at least for now) a very good group of friends down here, but there isn’t anyone who is able to devote the kind of time and attention I will need post-transplant.  This of course means I will need to hire someone, which is certainly not conducive to my stretching my retirement savings. So there’s that.

Then there is the usual mix of limited successes, long rehabilitation, and shortness of time before preparing for the next transplant (if that is even a possibility).  All in all, not a rosy picture.

But, I am still alive and kicking, still living my best life, and still taking advantage of what every day offers.  They will have to work harder than that to beat me!

 

[Ernie Kully]

Hey Charlene,

Hawaii is on my bucket list too – going there next summer with the family!  I hope you have the greatest time ever – you deserve it.  Take care, be well, and have fun 🙂

Ernie