My name is Nicole, but I go by Nickie to all that know me! I am 26 years old and have been fighting for my life for the past five years. I have an amazing family and an even more amazing husband and I of course cannot forget about my fur babies! They have been the ones to get me through all the rough times and the reason I fight so hard. I graduated with my bachelors degree from West Virginia University in 2011 and was hoping to open up my own doggie day care one day. I also had a lot of other dreams and visions of what I thought my future was gong to be. I pictured a family and my business and my husband being a baseball coach like he has dreamed of and building our dream home and just making memories and traditions and growing old together. But all of these dreams came to a halt and now my only dream really is to just be able to live and to breath. Seems like such a simple dream doesn’t it?! I wish!
I was diagnosed in August of 2010 at the age of 22 with Hodgkins Lymphoma. I underwent many rounds of chemo and radiation and sought out many different doctors. Finally in January of 2013 I was in remission. I then underwent a donor bone marrow transplant and thought that if I could make it through that that I would be okay and I would finally get to start living my life again. Well, for a few months that was true, I was able to marry my best friend and start working and start doing all the fun things that I had been missing out on. Then about eight months after my transplant I began experiencing symptoms of GVHD (gravt-vs-host-disease) which caused me to have marks all over my skin and dry eyes and eventually a disease call bronchiolitis obliteratans, which is a disease of the lungs. This is the disease that has changed my life forever and that I want to raise awareness about. It is a very debilitating progressive disease that will eventually result in respiratory failure that will result in death. In August of 2014 about ten months after my first symptoms I really began to experience just how debilitating it can be, I really started to get short of breath with activity. From there it slowly progressed to me now needing to use a wheelchair if I have to go any distance and I can’t do any form of activity really. I get short of breath just washing my hands. I can no longer do many of the things that I love, I can’t scrapbook, go to sporting events, go shopping with my mom like I always used to, go visit my dad and go to cedar point or even play with my dogs. Needless to say, I don’t have much quality of life. I am on many medications to try and slow the progress and to keep me from getting any infections of the lungs that could be deadly to me. These medications are there to help me, but the side effects are almost as bad, I experience nausea on a daily basis and have joint pain.
Back in March I was rushed to the ER because I went into respiratory failure, luckily I was able to be saved and although I ended up having to get a tracheostomy and need to be on oxygen all the time I am just happy to be in my own home! While I was in the hospital they found that I had a fungal infection in my lungs that almost killed me, I am taking antibiotics to get rid of it but it will take up to six months to fully be gone. My amazing doctors at UMMC just informed me yesterday that I will hopefully be put onto the double lung transplant list within two to three weeks. They are just waiting on some final results from a couple of tests!
This transplant will be a very tough surgery for me to get through and the recovery will be even harder. Even if I make it through all of that, my expectancy is only another five years. Although I am devastated and scared to hear that, I am thankful that I may have the opportunity to get more time with my family and be able to say goodbye and be able to enjoy all the small things that people always take for granted. With this news and with everything that i have been through and all of my daily difficulties I have learned to understand the true meaning of life and to really appreciate all the small things.
I am writing this blog to get my story out there and to raise awareness about the disease that I have. I am not looking for any sympathy or pity and I don’t want people to feel bad for me. I would just like to share my daily struggles and triumphs and help raise awareness of this terrible disease and the importance in research to try and find a cure.
nickiesfightforlife 