Help Riley! Left Ventricular Non Compaction
$650 raised
13% of $5k goal
8 contributors
4 Years running
Okay. . I usually don't say things because I'm a private person, but this I have to say. In April of 2013 I was diagnosed with a rare heart condition and there is no treatment for it but to get a new heart. It was so rare that the life ...

Okay. . I usually don't say things because I'm a private person, but this I have to say.

In April of 2013 I was diagnosed with a rare heart condition and there is no treatment for it but to get a new heart. It was so rare that the life expectancy with it was 90% because there was no way to treat it.. it could only be slowed down.

My first procedure happen on the 24th of April and I begin the process to get placed on the heart transplant list in Atlanta. I got through that process fairly quickly and I was told that my heart application would be submitted in September and that I should expect to hear something back in 3-6 months. A week later I got a call from the Vanderbilt Heart Transplant team stating that they would like to meet me and schedule me for another heart transplant evaluation. 

On the 13th of Oct I traveled to Nashville to get the same test that I received in Atlanta, but this time it was different this time the doctor's moved with a sense of urgency. On the 18th of October I received another procedure that required me to have 24hr medication also on this day I was placed on the Heart Transplant List in Nashville! I was told that because of my blood type it might be hard for me to get a heart but I should expect a wait time of 2yrs at the least. 

On Nov 2nd I was admitted to the hospital because I had a cold and I was also taking off the Heart Transplant List because you can't be sick and get a new heart. Only after being on the list for 16 days I was taking right back off.

On Nov 14th I met with my doctors to schedule a Artificial Heart Transplant for the 13th of Jan at this time I was still off of the heart transplant list because of my cold.

On Dec 3 I got a call telling me that all my results had come back negative and I would be placed back on the list! 

So my day 1 starts over again. 

On the 6th of Dec I talked to my LPN (Beth) about travel arrangements in case I received a call for a heart. She reassured me that it would not happen so quickly but if it did happen ...God forbid it happens over the weekend because she didn't have the information. We laughed a little and I hung up the phone.

On the 9th of Dec I watch my son play the best game he has ever played in his state football championship. Which they won! The announcer kept calling his name. 

At 12:18am on 10th of Dec I received a call from Sheila in Nashville and she said to me "Ms. RILEY we have a heart for you!" All I can tell you right now is that he is 20yrs old. How soon can you get here? I was excited and disappointed at the same time because Beth didnt give me the flight information!

My fiance was in the shower and I just sat there and waited until he got out. He came out and immediately asked what was wrong and I begin to cry as I told him we had got the call. I think he was more excited than I was. He called Ja'Cara Doyleand in 4sec she was at my house lol. As we sat and waited for the ambulance they asked me was I nervous, I said no, was I scared? I said no! When we arrived at Vanderbilt I waa greeted by nurses and doctors! They told me how I was the first person in their hospital to get a heart without having to get a Artificial Heart! 

I went into surgery at 4:30pm and I came out at 10:30pm I woke up at 11pm but that was only to complain of pain. Usually after surgery your sedation time is 40hrs at the most. I woke up again at 12:33am and I asked for a pin and paper. On that paper I wrote "Can you take me off this ventilator because it hurts! The nurse looked at me and said no we can't do that right now. I wrote on the paper again. "I understand the concern, but I promise I can breath on my own. After arguing she figured out she was not going to win and she took me off! 

On the 11th I was able to sit up and get into another chair. At 5pm that same day I walked around the hospital! 

On yesterday I walked and talked at the same time which couldn't do! I want to Thank all the people who cried and prayed for me because I'm not one to cry! I thank God for answering my specific prayer because my prayers were very specific. I LOVE YOU LORD! So when I said Happy Birthday to me it truly is my birthday 12-10-13. My second chance and life!   

I am not asking for much whatever you can give will help. I can't work for awhile and my fiance will be off taking care of me. If you feel you can please do. Share with your friends to help a person who will truly benefit from it. Know I will it be appreciated it will be given back when I can do the same for someone else.

Thanks Tekenia.


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