I am struggling a little on how to put into words how I am feeling right now. I would hope that adult CF patients are starting to realize more and more that lung transplants do add years of quality life. I would also hope that if/when the signs of end stage CF become a reality that us adult CF have the knowledge and tools to make an educated choice.
I am the first to admit that I lived in denial. My disease was invisible to the outside world if I chose not to share it. I looked like I was fine. . . but there comes a point when CF cannot be hidden. 'End Stage CF' was something I HATED reading in my medical charts. I hated the thought of being put into a category, feeling like my future was being wrote off. The reality was that end stage cf was taking control of what little time I had left. The catch is that we CAN do something about it. We can make a choice. We must be our own advocate!!!
If we don't take charge of our future with CF then who will? My point is that we need to recognize the signs and prepare to be able to make a choice. Please be open with your CF doctor and family. Discuss the option of a lung transplant. Many things are changing and improving. Pittsburgh and now other hospitals are using a procedure where only 2 incision are made on each side of the chest eliminating cutting the sternum. Rejection medications are being improved and since 2005 the way patients are listed is based on need and not just a waiting game! Also, most statistics can be outdated~ Get the facts, be educated so you can make a good informed decision.
Don't be too quick to eliminate your options. Look into lung transplants before you get 'too sick'.
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2 weeks ago