"A lung transplant is needed because the lungs can no longer perform their vital gas exchange function. (Gas exchange: absorbing oxygen into the blood stream and shedding off carbon dioxide from the blood stream) We (the Barnes Transplant Team) evaluate people with severe end stage pulmonary disease, who have no alternative treatment, and who have a disability and rate of progression indicating very limited life expectancy in the range of 12-24 months."
That's a statement taken from the Pre-Operative booklet Barnes-Jewish Hospital issues people who go on "The List". The remarkable thing is that my doctor told me in April of 2008 that by the rate of my digression (they call it progression), he thought that I might have 2 years left. Now, if he was talking about dying or needing a transplant, I'm not quite sure. It's the same thing isn't it? At any rate, it still bothered me!!! So here we are, 2 years and 4 months later and about 6 months ago I went on oxygen(O2) full time which is a huge indicator to the doctors that I was finally worthy of The List. Ok, sometimes they're right but doesn't mean he's RIGHT. God must of given him that little bit of wisdom and discernment. Now, I've been told or you could call it warned my whole life that my life expectancy was going to be short. Cystic Fibrosis is a child killer and back when I was first diagnosed at 1 years old I think the doctor told my parents that I would only make it until I was 6 years old. My parents were good about not treating me any different. My mom was great about that.
I used to blow it off and refrain from thinking too much about it. Now, some days, I can't stop thinking about it. It's usually induced by a rough day of having to sit around and concentrate on breathing..........Breath in.......Breath Out....almost all day on those days. There is a whole lot of grunting too. It is official I am at, what the doctors call, "End Stage Lung Disease". But there's still HOPE!!! I'm eligible for a double lung transplant!!!
The Transplant Team sent us this packet of information with a booklet and consent forms a week before we attended the Pre-Op orientation class on July 28, 2010. Angela opened it up and started reading it then promptly put it down after going through a couple of consent forms. Consent forms like, "Consent to accept an organ from a socially high risk donor", "Consent to participate in a Lung Preservation for Transplantation Research Study", "Consent to Lung Tissue Study", and a few others, not to mention Consent to the Lung Transplant itself. If you're looking to fall asleep to a nice easy read, this booklet they send you would not be it. It's intense. They explain everything to you procedure wise. It's complicated and mind boggling to think that this can actually happen.
We attended the Pre-Op orientation class after we had missed the first one!! I messed up. I didn't check my schedule the day before and I assumed that it was at 10am and it was really at 9am. Angela and I both goofed on that one. I can blame it on the lack of oxygen but she will just have to blame it on me!! We were thinking in our little head that there must be tons of people going to attend this thing but when we got there it was just her and I and Nurse Coordinator (NC). The NC was a very kind lady and actually got a little teary eyed while explaining the procedure to us. It is a lot to swallow. She was explaining to us what the procedure would be like if there was issues with internal bleeding. Lets just say Angela check out at that point. She bowed her head and put her hand on her eyes. It was a little overwhelming for her. For some reason I it didn't phase me. I am weird like that. Taking out all the mystery sets my mind a rest. I love knowledge because it sets you free. Lets face it, I'm going to be on some pretty good drugs, so I won't even be there to comprehend it. I'm going to be three sheet's to wind and on a journey to La-La Land! Angela is going to have to watch me go through all this without drugs. After it's all done she may start drinking! LOL!! Nah! She would never do that. She has never had alcohol before and never will. She will just have to pray hard and rest in the grace of God, knowing he will see her through. We are already praying for our hearts to be prepared for it. You could join us in that request.
Our next meeting was next August 8, 2010. This is the Post-Op orientation. We met with another NC and she was great like the other one we had. She actually has been in the OR with the surgeons and handed them their instruments. She gave us a lot of confidence that day. Her experience and confidence was uplifting and refreshing. This meeting was about all the ins and outs of what our life will be like after transplant. Things like, I will be taking rejection drugs to suppress my immune system and I will have to log and chart things like weight, temperature and micro-sperometry test daily. The charting will give the doctors the clues they will need to detect Chronic rejection, considering it is known to be sneaky. We learned about chronic and acute rejection and all the high risk that come with taking the drugs, the side effects and such. She talked us through the surgery again and I asked many morbid questions. Angela did much better this time around. She actually smiled and laughed--just kidding, Ang. YOU ARE GREAT!
Again, they have to tell prospects all the risk associated with the procedure and after care. It all goes back to that greedy person who sued McDonald's, after they got burned from a cup of coffee they ordered. The world has never been the same after that. Everyone tells you the risk and warnings with their service and product because they afraid of litigation. All "to go" coffee lids have "Caution Hot" on them because we wouldn't figure that out on our own and we might injure ourselves and sue them. These Pre-Operation and Post Operation Orientation classes serve the same purpose. The message is the same on the "LID", "This Lung Transplant is going to hurt and there are many high risk involved. Just don't say we didn't tell you so!" Like we couldn't figure that out on our own?