Yesterday was a good day. I have a check-up appoint in Boston with my Transplant team. It went wonderful. Since it went so well I feel its ok to share my whole story... so over the summer I was have severe anxiety about death and dying and transplant. It was keeping me up at night and sometimes make me so anxious I didn't want to leave the house because I was afraid of getting hurt or lost somewhere while driving and MISS my transplant call. I lost it one night because my brother wanted to use my cell phone charger overnight, my phone had full charge so it really didn't matter. But I just lost it and had a break down at the thought of my cell phone dying and the transplant team not being able to get in touch with me. It was a disaster. It may sound crazy but it made ME crazy. I was on some anxiety medication already but my docs decided to change it because they thought maybe the old one isn't working anymore. So I was put on new meds, they worked wonders! I was able to sleep and go places without having a panic attack.
I ended up getting sick and needed to be hospitalized for an excerbation. While I was in the hospital this team of shrinks came to see me and changed my medication on me. They stopped the med that was working and put me on other stuff and it was just a nightmare. I left the hospital on different meds and not stable at all. I was slowly slipping into a pretty deep depression and my mood was way out of whack. I lost the drive or desire to do anything. I just wanted to stay in bed and sleep all day. Finally I had a talk with someone who flat out told me to "Get my shit together" because I wasn't myself and they didn't like who I was becoming. So I just stopped all my psych meds. I couldn't take it anymore. I know, I know, you shouldn't just stop meds and you should never just abrubtly stop psych meds. But I felt I had no choice. I felt no one was listening to me. So I quit them.
Well I told my CF doctor about the abrupt stop and everything. He is then obligated to inform my transplant team. So he did, which is fine, I know thats part of his job. But somewhere along the way information got screwed up and the Transplant team heard I quit ALL my meds. Well thats a huge red flag for them and a huge no-no. They called me about 2 weeks ago and say they were going to "deactivate" from the list until they could meet with me and talk further. I was in the hospital (this last trip) when I got that phone call. There was nothing I could do at that point.
So yesterday I was able to get an appointment with the Transplant team and discuss the situation. I was able to explain to them exactly what really happen. While they read me the riot act for just "quitting" meds they understood why I did it. I got a lecture on how important meds are post transplant and how you can NEVER miss a dose or rejection will happen. I know that, I'm not crazy. I would never go through this whole process and then quit taking LIFE SAVING pills. But I understood where they were coming from too. So at the end of the appointment the doctor looked at me and said, "Well I think we can reactivate you today." I was so thrilled.
I'm not sorry for what I did. It needed to be done. But I am sorry for the way I went about doing it. Next time anything like that happens I will just try harder to bug my doctors more and get them to see the problem. I have also gone back to the working anxiety medication and have been doing much better!