Powered By Blogger

Thursday, October 21, 2010

Alice in Transplantland


Toni, Bethany, and I standing by the donor quilt.
We all received transplants in 2009.


That was the theme for the 3rd Annual Ladies Heart Transplant Luncheon that I attended Tuesday with my lovely mother-in-law, Margie.  If you remember the story, it is a very confusing land, contradictory, just when you think you know exactly what to expect - POOF!  Everything is different.  Dr. Mandras did a fabulous job of weaving parts of the transplant experience in with the story of Alice in Wonderland:  diagnosis, hospitalization, the surgery, the discharge.  It was pretty amazing, because life as a transplant patient has many parallels with that wacked out movie!   I never really liked it, and Dr. Ventura admitted that it was too scary and unpredictable for him- Just like waiting for a heart.

Our tables had little boxes at each seat, and they were specifically for transplant patients. The first item I pulled out was hand sanitizer.  Carrying that around is like pretending you have your own little sword to battle against germs.  I would say that it is one of the reasons I have stayed out of the hospital, but it doesn't work miracles. I am really enjoying the stomach bug my kids passed on this week.  At least it isn't a hospital bed!  It definitely could be worse.

'I believe in you hand sanitizer!  I just want to ask that you please stop taking the skin off of my hands, and we will continue our battle against the nasty germs my children generously share.'

You couldn't have a transplant survival kit without sunscreen!  Even though the packet we were given would last me one day (and only cover my face), it is a reminder that we are all more likely to develop some type of cancer due to our immune systems (especially skin cancer).

I am very proud that I now own a pen from the Louisiana Organ Procurement Agency.  Many of the ladies in that room would not still be alive if there were not dedicated, sensitive professionals from LOPA that go and speak to families about donating a loved one's organs.  Do I want to have that job?  No.  Did I need someone to have that job for me to live?  Absolutely.  My specific thanks is to TOSA for finding my heart in Texas ~

Don't forget the tattoos!  Stay tuned for the Napolitano family display of LOPA tattoo for the month of November ~ National Organ Donation Month ~ I know you will help me in my informal campaign of encouraging people to sign those donation cards!

My favorite trinket was a pin with 2 silver hearts entwined, with a royal blue bow tied around it. The inscription on the card is, "You can change your life by changing your heart."  Reese randomly asked me yesterday, "Mommy, where is your old heart?"  I didn't really know how to answer that, because I don't even know what they physically did with it.  She seemed to be happy with, "I am happy with my new heart, because it helps me love God and my family and friends even more."


 






Meggin helped advocate for me in regards to financial roadblocks
before being placed on the transplant list.  The initial rule was that
you had to pay $10,000 upfront to even get on the list.

 My Hero.  This man helped me make the best decision of my life.
Dr. Ventura




My Case Manager Raylene.  I have never had anyone follow-up with
me better than Raylene.  She is truly the reason my hospitalizations
have been limited since discharge.  Amazing woman!


No comments: