Monday, August 24, 2009


Dont mind my grammer or spelling it was just for me :) i shared this at my 20yr class reunion sat night!

good evening fellow classmates,

let me start by saying I just might cry and my disease effects my speech causing me to run out of breath, yawn, crack and slur! So be patient with me please!

My name is Tippi many of you know me and many of you don’t. When Dackeyia first asked me to share I thought omgosh im really going back to highschool! I have to give a oral report!!!

However after I thought about it I thought it was a great opportunity to share my very rare disease and the importance of organ donation.

I have a inherited progressive disease that I was born with called Friedreich's ataxia (FA for short ). Most people come down with symptoms 9-15 years of age.
I was 27 when I first noticed things were not quit right .At the age of 31 I had a heart attack and finally after 7 years of going to the Dr. I got diagnosed with the FA at age 34. I knew I was not crazy!!!! its basically a muscle wasting disease effecting ever single muscle in your body.

the say my heart condition is secondary to the FA. I lived with a bad heart until I was 37 with the help of medication. Finally the medication did not work no longer and I started to go downhill.

my Vallejo kaiser Dr. referred me to heart transplant in santa Clara. When I very first had my appointment I left feeling like I would never get a heart.

My weight was to high and the neuro disease. Well I was not happy and was not gonna go down w/o a fight. I lost 57 lbs and started emailing FA Dr. around the globe!!! I got letters from DR's, literature whatever I could get to educate kaiser and Stanford to even approve me for the list.

I got approved!!!!!!!!!!!! and waited 5 longggggggggggggg months at home. Never got the call. Finally Aug last year I got admitted to kaiser santa Clara to live and wait for a heart.

That was very very hard my son was going to be a senior and my baby girl was starting middle school. I was not home for any of that my husband Scott had to do it all.

I am very blessed to have such a good man in my life he takes the best care of me along with our two children.

I did not know if it was gonna be weeks or months waiting!! one man waited 12 hours another 1 year!

The Dr. came in 15 days later while I was on the phone with my daughter and asked me if I wanted to take a ride? I said ok where? she said Stanford!!!!!!!!!!!!!!!!!!

!! Brianna heard everything and started yelling saying dad,dad mom is going to Stanford, they got a heart!!!!!!

To make it short I got the heart and then had to live in santa Clara for a month before I could come home.
Finally October 9th Scott came and took me home!!!!!!!!!!!!!!! wow it had been 2 months I was gone..

its gonna be a year in 6 days since my surgery. Also just to inform you. I am the very first FA patient in the united states to get a heart transplant.

my main message to you thru all of this is please, please donate your organs or families if ever put in the spot to make that decision. God has a
plan for the 1 dying and they could save someone else. 1 person can save up to 50 people!

BTW I have met my donor mom and we keep in touch and its been good healing 4 her.

I have a 28 yr old heart and not a day goes by I don’t think of Angelina or her mother for making decision to donate her organs.

also go out there and make those special memories and like my heart transplant friend deb says make moments that take your breath away. Don’t put anything off until tomorrow, a walk on beach or a visit to friends or family. We don’t know if there will be a tomorrow!!
As my husband always tells me live for today tomorrow is another day. I know easier said than done trust me I know but its still encouraging words to live by.

Thank you
for listening and being patient with me.

class of 89 rocks!!!!!