Since my last post I have received more information and the case studies for the clinical trial they are doing at Cleveland Clinic. After reading everything, speaking with friends and family I decided I wanted to try it at my next appointment. This was all in February, we didn't go back to Cleveland as soon as we had all planned because of my husband's work schedule. Well March rolled around and Dewon came back from training. I called to schedule my follow up and to get put on the clinical trial for the time we would be in town. I was given a schedule and date for April 23-26. I hang up and shortly after the doctor running the case study calls to tell me that I do not qualify for the case study anymore. I actually never did qualify actually. According to her you have to start the injections 2 weeks post status change to a 1B or 1A. Since I was bumped up the middle of last year I didn't qualify. My heart instantly dropped. I did all the research and actually got excited for a chance to lower the antibodies, giving me a chance to receive more heart offers. I just broke down and just wanted to hang up. I asked the doctor why the clinical trial was even presented to me if I didn't qualify, or why no one called me and told me anything after we left in December. She stated that the trial was still new and that my doctor may not have had all the information. She also didn't understand why Dr. Mountis had not done any IVIG or the plasmapheresis to help lower the antibodies. On top of all that I found out my biological mother may have been on drugs when I was conceived. I of course can not prove it but I have heard from a few sources that this is true. At the end of the day it just makes me sick to my stomach that a woman can do this and not feel any remorse when you see your own flesh and blood struggle. My mother was never really around as I grew up so she never seen first hand what I went through or how I struggle now. It hurts to know that all of my issues could be because she was so careless. She has taken more than she will ever know away from me. I will never conceive, carry or deliver my own child. My life will forever be an uphill battle. Thank God I have an amazing husband, family and friends to endure my struggle and give me strength along the way.
On a positive note, I found a heart transplant group on Facebook and they have been wonderful. When I shared my story they were so uplifting and positive. I also made a few new friends through the page. One little girl that I just instantly wanted to help and be a big sister to. Through this journey it's so easy to get discouraged and I have found that God puts people in your life to help you get through the rough times. For that I am so thankful for all of my heart brothers and sisters and of course my friends who stand beside me no matter what.
In the process of all the ups and downs I decided to take a few courses to start a non profit organization and to also start writing a book. I by no means think I am anything special, but if I can share my story and it help someone else going through something similar, that is what I want to do. It's something for me to look forward to and to work on why I wait for a transplant.
Once again, thank you for reading and for your support. Until next time.....