Going on Oxygen

Going on Oxygen 

 

     By my 6th and final year of college, my health had progressively declined. I could barely walk a few steps without gasping for air. I felt very self-conscious about this when I was in class or in the hallways as I was breathing so heavily, I'm sure people noticed. One day I walked out to my car to go to class but realized I left something important in the house that I needed for class. I couldn’t go back. There was no way I could scale the steps and walk the necessary distance to get what I needed. I knew I couldn’t keep going on like this.

    It was on Easter of 2006, age 24, that I told my family I was sick, and this time I needed to go to the hospital. I had never felt this sick before. This was unlike any other time. Never before had I ever been so winded. I could barely catch my breath at rest. We called the doctor the next day and I was admitted into the hospital. I did my best to shower, do my hair, and put on my make-up. I wanted to try to live as normally as possible. I remember it took a lot of effort to shower, as the shower was not in my room. It was instead, down the hall, and I could not wear my oxygen. I remember my doctor telling me that if someone off the street were to see me, they wouldn’t even know that anything was wrong with me. After this hospital stay, I came home on oxygen. I had frequent check-ups at the doctor’s office to keep a close eye on my lung function. I came home with orders for some new medical equipment. I had a pulse ox machine and I would check my oxygen periodically, throughout the day. I also had a blood pressure cuff as my blood pressure was very high and needed to be monitored. I came home on IVs and I don't think I came off until 3 months after my lung transplant. It was almost the end of the semester, but I could not go to school anymore. I had a therapist coming to do my therapy one to two times a day.  My sister and mother would do it the other one or two times a day, for a total of three times a day. I had an oxygen concentration machine which pulled oxygen out of the air and it connected to a long tube that had a cannula on the other end. I was able to travel pretty far around my house with it. I could even walk to the front of my house, possibly the back.  I was also given a portal oxygen tank that I could take with me on short trips.  

(This was taken on Easter when I knew I needed to get to a hospital. It's not uncommon for people with CF to look way better than they feel. I truly felt horrendous and could barely breathe. My mom had given me a penguin as a funny gift because she always would tell me she gave me wings to fly, and I would tell her, "You gave me the wings of a penguin, non-functional," Just one of our jokes.)

 

(My brother and I were on IV antibiotics at the same time.  I was also on oxygen.)

 

(A family dinner; on oxygen.)

    At this point I was doing everything and anything I could do to try to improve my health.  I was drinking tons of Traditional Medicinal Teas, using the Acapella, nebbing hypertonic saline, Pulmozyme, Xopenex, Mucomyst, and possibly more.  I even tried using the Flutter but at this time, that didn't help too much. I was constantly in CF groups looking for any new medications or natural remedies that could help.

 

(Doing my nebulizer through my Acapella)

CF Chat Groups and Transplant Chat Groups, Sleeping pills

CF Chat Groups and Transplant Chat Groups Online, Sleeping Pills

 

    Through AOL, I was able to find groups dedicated to CF. I made a lot of close friends and was glad to have other people to talk to about my experiences. I quickly found that many of the people I talked to were also depressed. Not only that, they tended to have insomnia and needed to take sleeping pills, like I did. I would later find out that it was common for people with Cystic Fibrosis to have a disrupted circadian rhythm. I was put on many different sleeping pills over the years, but the one I had most trouble with was Ambien. Some of the people I was talking to in the CF groups also took Ambien. It seemed to work for me at first. I would take it, hop into bed, and soon after I would fall asleep. After some time, it just made me feel euphoric and not very tired. I would write lots of emails to people, at night while under this influence. I would talk to people on the phone as well and fall asleep while talking. I gained a lot of weight as I would eat throughout the night like a zombie, often finding random pieces of food in my bed or in the kitchen the next morning. The combination of antidepressants and Ambien completely changed my personality and behaviors. I felt out of control. On top of all that, I was also drinking alcohol at this time to escape from my daily life. This only further amplified my problems. Again, I noticed other CFers also had a problem with drinking. I would keep in touch with many of the CF friends I made over the years but sadly, a large amount of these people would pass on. That was the hard part about getting close to people with CF. I continued making new CF friends and later found it quite helpful to join lung transplant groups as well, after I received my lungs. I had many questions and found it helpful to consult with others who had gone through similar experiences. CF before a transplant is a much different life than CF after a transplant. So, I was grateful to have both groups for the different phases of my life. I received a lot of amazing advice and learned about the most recent treatments and studies. I eventually would withdraw from these groups too after many people I got close to would pass away. I just couldn’t emotionally handle it. I eventually stopped drinking before getting my transplant, and I eventually got off of Ambien, all sleeping pills, and stopped taking antidepressants, some time after my transplant. Several years ago I started taking an antipsychotic and an antidepressant together which prevents me from getting hypo-mania and helps me sleep.

 

Rutgers, Kean University, Antidepressants and Withdrawal

 Rutgers, Kean University, Antidepressants and Withdrawal

 

I went to Rutgers University for a year. The campus was extremely large and I had to do quite a bit of walking. I had to pace myself. I took the bus to get to classes off campus. To get to the dining hall, I needed to walk a bit of a distance and so I rarely went. The majority of my classes were on the campus I dormed in and I had to walk to them too. I made sure to give myself enough time to slowly walk to class without being late.  The enormity of the university was overwhelming. Depression had really taken hold despite the antidepressants. I did enjoy being on my own though. I put a request in for a single room due to medical reasons as I did not want to do my Vest in front of anyone. Coughing and spitting mucus into a cup isn’t a pleasant thing to witness. Besides that, I always had terrible insomnia that was only exacerbated by steroids. However, it did come in handy for pulling all-nighters when writing papers. When I would get sick, I would have a therapist come to my dorm and do my CPT for me. She would bring along a percussor which was really a modified jigsaw with a cupping mechanism attached to the end that a patient had made her. It really worked wonders in loosening mucus. When I wasn't on IV's, I had my very large Vest machine that was part of my furniture in my dorm room.

                                                  

(In my single dorm room at Rutgers with a sock for an IV cover, having a family visit.)

                           

 Soon after starting the first semester of my second year, I became ill with a mysterious illness. I was constantly nauseous and had what felt like electrical brain zaps. I couldn’t figure out what was causing it and it wasn’t going away. My parents and I decided I should come home and try to get into a local university. On September 11, 2001, I left my dorm and headed home. My father was going to take me to meet someone at Kean University to see if I could possibly transfer there instead of staying at Rutgers. Of course this would be no ordinary day. As I drove home, I was listening to the radio and heard, the reports of the first airplane hitting into the twin towers. We did end up going to Kean University that day.  We got to briefly talk to someone, before the university would be shut down for the rest of the day. I was able to transfer to Kean and get into the necessary classes. I did have to obtain some overrides as some classes were full. I had only missed a few days and I was able to catch up. The campus was much smaller and much better suited to my needs. I enjoyed the smaller class sizes too and began to make new friends. Soon after, I figured out the cause of my symptoms. I traced it back to the day I stopped taking my antidepressant. I had not known that stopping cold turkey would cause intense withdrawal symptoms. I was also prescribed this antidepressant by my CF doctor and so I did not have all the information a psychiatrist might have supplied. I promptly restarted the drug and immediately felt better. Throughout the next several years, I would try almost a dozen other antidepressants. Some were harder to wean off of than others due to the strong withdrawal side effects. I had mild success with antidepressants. Again, I never really realized they were causing bipolar tendencies and that they were not an ideal treatment for me.

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