DNR

I signed the DNR today. Probably one of the hardest things I've ever had to do, but it needed to be done. With as sick as I've been, I've been so afraid I'd end up in the hospital and either be too sick to talk or have the doctor not honor my wishes. I wasn't sure if I ended up in the ER and said I wanted a DNR if they'd listen.

I've had this infection for 6 weeks now. It's not getting better. If anything my cough is worse. I'm now bringing up blood in the trach. I don't know if it's because my lungs are irritated from all the coughing or if there is a granuloma or something, but I'm back to bleeding like I did at first. I cough, and it's like Freddy Crooger - blood everywhere. Disgusting. They are trying yet another antibiotic - zyvox. They don't really have any meds stronger than this. If this doesn't work, I don't know if they have anything else. If they do, I'm not sure I want it. We are changing the trach on Thursday. The thinking is that maybe if the infection has colonized in the trach, changing it will get rid of it. My breathing has been so bad. My lungs hurt so badly; the pain is immense. I've been waking up dizzy and with a massive migraine the past several nights. I know I'm not getting enough o2 while I sleep. Before the trach, I was using bipap at night. We knew I'd probably need to be vented while I slept at some point, though I never thought it'd be this soon. Of course, then I have to decide if this is what I want. I've realized in the past year or so, the reason I go to the hospital is that I get so I'm struggling so much that I start to get tired. The effort of breathing becomes too much. It hurts so much from breathing and struggling that I go to the hospital to get relief. That is the pain I am afraid of. The pain of struggling to breathe. To be suffocating and be terrified and not able to do anything about it, but if the pain is taken care of and out of the picture, then going to the hospital becomes unnecessary. I am trying so hard to stay out of the hospital. I have goals. I want to go to Disney. I want to make it to Christmas. I don't see the point in going to the hospital. They can do the IV antibiotics at home. If they put me in the hospital, I want them to guarantee, I'll come out. The only reason for going to the hospital is so they can vent me, but if I were to go on a vent, can they guarantee I'll come off? Now I know they can't guarantee this 100% with anyone, but baring something unexpected happening, they do so with at least a 97% certainly they'll leave. At this point, I don't know if they can even give me a 50% certainty.

The hardest thing about the DNR is I didn't want it to seem like I was giving up. I'm not. Not by any means. But if dying is the goal, the end result, as it is with hospice, then what would be the point of coming back. If it came to the point that I need CPR, I am already clinically dead. I don't want to be brought back. In addition, for most people, CPR has it's consequences. They may bring you back, but for what? You are not the same. Your quality of life is not the same. If they could bring me back and I would be better than I am today, then it would be okay. But even if they were to bring me back to how I am today, I don't want it. To me, this isn't a quality of life and at some point It does have to be a quality not quantity. Right now I cannot live life and enjoy it. I am grateful for the trach and the time it has given me with my family and friends, but it isn't a quality of life. I could not imagine living like this for 5-10 years. The DNR was a difficult decision, but the right one. Now that it is done I'm much more at peace.