I deleted Sheena’s post with my drug induced ramblings. It should have never been published. I wanted my first blog post from the hospital to be thorough and explanatory, but I was too doped up to write what I wanted, and Sheena didn’t know what I wanted so she wrote a brief explanation of the situation at the time. What was written wasn’t wrong, but my blog is my baby. It’s so personal to me and I put a lot of effort into producing a story that people want to read that it didn’t really fit into my vision of what this space should be. So now I’ll tell you my story as I envisioned it. There may be parts that are slightly inaccurate or less detailed because in the past three weeks there were times when I was so sedated I don’t remember whole days. I guess I’m not the most reliable narrator, but it’s the truth even if it didn’t happen.
On September 30, I went into Florida Hospital for a bronchoscopy. My new doctor, Dr. Gries, wanted to see if there was any rejection, infections, and condition of my lungs. Although the bronch itself went well, the trauma of the procedure caused my lungs to totally fail. What else is new, right? They attempted to fix the situation by putting me on the CPAP, but my body was fighting the machine and the team immediately made the decision to intubate me, which is when they stick a tube into your mouth and down your throat to help your breathe. I was sedated and when I woke up that night, I was admitted to the hospital with the knowledge that the only way I was leaving was if I placed on the transplant list and received new lungs.
However, for that to happen I would have to go through a two-week cycle of treatment that involved chemotherapy, plasmapheresis (a process in which the liquid in the blood, or plasma, is separated from the cells. In sick people, plasma can contain antibodies that attack the immune system. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute) and an IV Immunoglobulin medicine to fight the antibodies that caused my rejection. I would not be allowed to be re-transplanted with antibodies because they would just attack the new lungs, thus making the life-saving surgery pointless.
So for two and a half weeks, I went through intense therapies that made me feel pretty crappy with the knowledge that I may not even be listed after all was said and done. I was having anxiety attacks every morning, physical therapy in the afternoons, and treatments in-between. There were times where I felt like giving up. I felt like it wasn’t worth it. I was going through a lot of pain and discomfort and there wasn’t a guarantee that I would receive a transplant. Even if I did receive lungs, I might not survive the surgery or recovery. I felt weak and defeated. I was so close to giving up.
But then I remembered the last year and a half. 2014/early 2015 was the best time of my life. I felt normal for the first time. I bought my first car with my own money. I finished a year of college. I finally dated people. I made great friends. I made plans for my future. I finally knew what it was like to live like I had a future. When I remembered how happy I had been, I realized that all of this would be worth it.
About a week and a half ago though, after finishing my therapies, my breathing became very labored and fighting the ventilator. They sedated me to relax my body, which allowed the ventilator to get back in control. After doing a CT scan, they realized my right lung was collapsed and decided to insert two chest tubes. My chest felt less pressured, but the chest tubes cause a lot of pain, so it was a catch 22. A few days later, my CO2 levels rose to very high levels, and the decision was made to place me on ECMO, an artificial lung machine, was made. I was moved down to the CVICU to await the news about being listed.
For the past week, I’ve been in the CVICU on a ventilator, with two chest tubes, reliance on the ECMO, and a feeding tube.I get tired easily. I love the idea of visitors, but some days are good and other days are bad. Sometimes I’m just not in the mood for visitors and it gets overwhelming, especially if it is someone I don’t know too well. I can’t speak because of the trache, so the visitor has to be comfortable with that as well. I know people mean well when they want to come visit, but sometimes the best thing is to just text me or wish me well. I also enjoy receiving cards (you can’t send flowers or other plants because of allergens). I appreciate everyone’s thoughts and prayers, so don’t take it personally if I ask you to not visit me on a specific day. The thought counts the most to me.
Now to the good news.
My transplant team came in today to inform me that they have decided to list me. My Lung Allocation Score is 91, which is really high. I could be transplanted within the next few weeks, so now its just a waiting game. I’m excited but nervous. Its strange being in this situation again. I know what waits for me on the other side of the surgery. I know that it will be tough and painful, but I also know that I can do it. I’ve done it before, so that eases my fears a little.
I want everyone to send good vibes to my future donor. You all call me amazing and inspirational, but its the donor and his/her family who deserve all the credit. They make the biggest sacrifice to save a stranger’s life and I don’t think there is anything more incredible than that.
With Every Breath: My Life with Cystic Fibrosis 