When Rachel Bookman was 19 years old, waiting on a heart transplant – she launched a website with the intention of sharing with others what was going on in her life. Fast forward 10 years Rachel is now working with GLIDE FUND INC. to carry on the legacy of her brother Dr. Mark Bookman.
We wanted to share what her journey was like back then…
A Little Bit About Me… and My Journey
Hi All! Welcome to my blog. My name is Rachel Bookman. I am 19 years old and I am currently on the heart transplant waiting list at the Hospital of the University of Pennsylvania. I am a freshman in college, studying Marine Affairs at the University of Miami.
I grew up in a Philadelphia suburb with my mother, father, brother and two dogs. My brother and I were born with an incredibly rare variant of Glycogen Storage Disease (type IV). Due to the effects of this rare genetic disease, my brother had a heart transplant at the age of 10. I was 7 at the time. After his heart transplant, I underwent a muscle biopsy to see if I had the same rare genetic defect he has. The test came back positive.
Over the years, both my skeletal and cardiac muscle have deteriorated. I can no longer climb stairs or run. I need assistance getting out of a chair. Over the past year my heart’s ability to function has changed drastically. I was admitted to the hospital for heart failure last Halloween (2012) and again this past March (2013). I was officially placed on the transplant list on April 9, 2013. I had to withdraw from school because I cannot be further than 2-3 hours away from the hospital (by car) at any given time.
I grew up knowing that I would eventually need a heart transplant. The doctors estimated that I would need a transplant by the age of 16. It wasn’t easy watching the way the disease affected my family, but my circumstances were very fortunate in the fact that my parents could do everything possible for me and my brother in regards to our health and giving us the possibility to grow up and not feel like we were different. I watched my brother’s muscles deteriorate and the obstacles he had to overcome. My parents have provided my brother and myself with a stairchair, a wheelchair accessible van, and a wheelchair accessible home to make the experience less painful. I am incredibly thankful for my parents and truly blessed to have been born into such a loving household.
I am very fortunate in that I have an incredible support system. My parents have been incredibly supportive. They started a charity and a bike ride fundraiser. The “Save a Heart Fund” was used to fund research. On my last birthday, the genetic defect was discovered from mapping out our entire family’s genome along with the other affected individuals (Wang et al., 2013). We now have a blood test, but there is still no treatment or cure for the disease. I have hope that I may one day have a family of my own. In addition to my parents, I have been blessed with amazing friends. I am so thankful for my friends. Without them, this journey would be impossible. Thank you all for your support. I love you all so much.
So Now That You Know a Bit About Me…
…why make a blog? Well, I’ve never kept a diary, but I think now would be a good time to start. Aside from my disease, I am a normal 19-year-old girl. I like to shop, scuba dive, watch sports (especially the Eagles), play with my hair/makeup, tan, hang with friends, and on occasion…party! I am currently in a sorority (Tri Delta) at the University of Miami and I was a coxswain on the rowing team throughout high school and at Temple University this past fall. This blog will be more like an open diary for others to read as I go through the process of getting a heart transplant. I want other transplant recipients to know they are not alone with how they feel… especially the younger recipients. It is hard to watch your friends continue to live their lives like a normal college student should, while your are stuck with your life on hold. I wanted to make this blog in the hope that, if someone reads this who may be going through a similar situation, and feel like they’re alone or that their life is being put on hold because of what you’re going through, that you’re not and you can still be yourself regardless of whatever obstacle you may face.