Live Like you are Dying

 It has been 105 days since Khadees has been on the transplant list.  134 days since we first found out his diagnosis.  We continue to wait, continue to pray, continue to hope.  This week, he went back to the hospital due to issues with his PICC line.  We have tried everything (and I’m so thankful for the suggestions we have gotten from friends in the medical field, thank you!)  We’ve tried different dressings, different agents to clean, different agents to help it heal, gauze, etc.  Nothing has worked.  He finished a round of antibiotics Wednesday, the same day he was re-admitted and started on IV antibiotics.  The only saving grace is the last blood culture has no growth.  He is currently active on the list.  The Wound Team was consulted and a miracle happened to get a Dermatology consult in the hospital as well.  Things were all moving in a positive direction, with lots of good ideas to potentially prevent needing a new PICC, Port, or tunneled line, when one of the wound nurses accidentally pulled his PICC line too far when changing the dressing, making it completely unusable.  It was pulled tonight, and a peripheral line was placed, while everyone discusses the best decision for going forward.  We are all hopeful he will receive a heart soon, but a central line is essential for the Milrinone he needs.

Active infections and pain increase the workload to the heart, which can cause Khadees to decline quicker.  This is a vicious cycle that we need fixed and everyone is completely baffled at where we are at.  We are grateful for the team putting their heads together to find a solution.  

On top of all of this, Khadees asked the question today, if due to his age of 37 years old, would he need another transplant in his lifetime?  While I would have been okay with a simple, “yes, that is a possibility,” the doctor gave him all of the statistics on transplant patients.  This included 9% of transplant patients do not make it past the first year, due to rejection.  The average heart lasts 20-30 years, but if he needed another one at age 67, it would be a big question as to if he would be viable for a heart transplant at that point.  The drugs he will need for the rest of his life will be very toxic on his kidneys and many doctors will transplant after 65 (for the record, his transplant hospital does case by case basis on anyone over 65).  These statistics include ALL patients, regardless of age or compliance who have been transplanted.  So, it is important to remember that not all patients are compliant with medications and lifestyle changes post transplant, as well as many patients are 25+ years older than Khadees.  

This dose of reality is hard to swallow and I know it is hard for Khadees to keep his head up after hearing all of this.  The grief of knowing your life changed just 134 days ago, where you thought you had a clean bill of health with a minor acute illness, to taking on a lethal diagnosis.  The light at the end of this tunnel, however long it may seem, is that without the option of transplant, 1 year or 20-30 years would not be an option for Khadees.  A donor heart gives him the opportunity to see his kids grow up, graduate, walk his girls down the aisle, and be present in all of our lives.  

A timestamp is daunting, and I wish the statistics were not so easily rattled off by his physician.  However, this is the time, my Dear Husband, to be the strong and very stubborn man I know and love.  Know the odds and grieve over them, then rise up and live.  There will be days that we will travel again, go for walks, visit theme parks, play with the kids together, cheer on our kids from the sidelines.  I know this isn't easy, but we will walk through this together, just like all other obstacles we've faced.

I have found myself recently, trying to let go of the little things.  My kids are very much known for leaving everything known to man in my car.  Chick-fil-a drive thru trips end with at least a chicken nugget and hand-full of fries that I’m cleaning up after.  Oh well.  Stella’s pajamas are inside-out.  Whatever, she’s comfortable.  Allie thinks she should get a piece of candy each time she uses the potty.  At least she’s potty trained.  The little things are little, but the things that are big and so worth our time and energy, are worth being there and living for.  Those things are family and love (and maybe chocolate, but who am I to say?)

So, I thank you all in advance for the words of encouragement, the hugs, the weird Lord of the Rings memes, football bloopers, and the sweet videos (thanks Ohana!) that Khadees needs.  Thank you for being my support as we support him together.  He is forever, my Yellow Umbrella.