Oxygen

The first week after having my 4th lung surgery was hard. I was often in pain and even something as simple as walking to the bathroom would exhaust me. Since I had been through this surgery and recovery before, I was not too surprised by this. I didn’t have a problem taking it easy. We were also very blessed to have help from family and many sisters in our ward who helped to clean and who brought dinner to us.

A week after my surgery I was back at the doctor for a check-up. This time I was seeing my regular CF doctor (Perry Brown) who had been out of town when I was coughing up blood and had surgery. As expected my lung function was back down and my weight was still low. My oxygen was also low (barley 90% at rest), which made sense (given everything that I had just been through) but for some reason I was not expecting that. Perry was concerned with everything being low, but knew that it was expected, especially since this was my 4th bronchial embolization. Our big concern was my oxygen level…so he had me walk around the office for a few minutes and we monitored my oxygen saturation. It dropped as low as 84% and never went above 88% while I was walking (and it was a slow walk…nothing too strenuous). Hmmm, no wonder I was continually exhausted! With this information it was decided that I needed to go on full-time oxygen, at least temporarily. Perry reassured me that what I really needed was time for my body to heal. I need time to work on eating more and gaining the weight that I’ve lost over the last several months. ..time to be on oxygen full time to help my lungs to heal. Time…..

I left the office knowing that the logical thing was to go on oxygen full time, but emotionally I was very upset by it. I cried all the way home. I cried when I got home. One of my wonderful visiting teachers came over to my house and she let me cry to her and tell her all about how upset I was by this decision. I was frustrated because I didn’t want to deal with all of the looks and questions that I would get from people. Wearing oxygen is a constant visible reminder that I’m not doing well inside my body. It reminded me of all of my CF friends who have passed away and how they were on oxygen full time before they passed away. It was one more thing that I would have to deal with on top of an already full schedule of trying to take care of myself. I was upset because I didn’t go back to the doctor for 2 weeks and that meant that I was going to be on oxygen full time on my birthday. I always have known that at some point in my life I would be on oxygen full time, but that always seemed so far away and here it was right before my 29th birthday. I was frustrated that a few people that I had told about it told me to stop complaining and to be happy and to look at the bright side of things. I felt like no matter what I said they didn’t understand. My wonderful visiting teacher listened to me and validated all of my feelings. (she had breast cancer a few years ago and knew a little about what I’m going through emotionally) We talked about how it’s ok that I feel down and depressed about it. We talked about how when you have a chronic illness it’s hard to accept when you move up the ladder in the progression and severity of the disease. It was all ok that I was upset and that I needed to get all of the emotion out and not keep it bottled up inside. She also validated that I needed to be ok with it before I could deal with the “rest of the world” and the questions that I could get from people who just didn’t understand and/or wanted to help. What a blessing she was to me that day and such a wonderful tender mercy that the Lord had given to me!!! After our visit I felt much better and could see the silver lining in this “new adventure”.

So my new adventure is living with some “new accessories”, having a constant “tail”, and carrying a “pet” with me whenever I leave the house. The first week was hard for me, but I had constant love and support from everyone around me. I definitely haven’t let wearing oxygen slow me down. I carry it with me everywhere. Now it’s just a part of who I am. I’m not sure how long I’m going to have to wear it full time, but it doesn’t matter. It has helped me to feel better, so that is all that matters! (and the fact that I don’t have to be in the hospital just to wear it…definitely a huge plus!)