Living On Oxygen for Life
Some of you know that I started on Tyvaso on Friday. A nurse showed up at my house, went through the paper work, the instructions on how to assemble and use the inhalers (there’s 2 of them to be rotated every other day). She stayed about an hour to make sure I did well on my first of 4 doses for the day.. everyday… for as long as I have to take this medicine. I’m to wake up in the morning, prepare the inhaler with distilled water and the Tyvaso medicine for the use of the whole day. Then, I do my first treatment. But on Friday, after the nurse left, my reactions to the medicine started to kick in. First it was a little sore throat and then within about 30 minutes after the treatment, from the back of my throat & down my esophagus felt like so raw that it hurt to inhale. That was just the beginning. I was like.. what have I gotten myself into??
I crawled into bed and swore I was not going to cry. My husband, K, wasn’t home yet. I so needed him. He’s my rock but I was going to be strong in the face of this pain. Right? So, the puppy hopped up on the bed and kept me company. When K got home, he walked into the bedroom like he was walking on eggshells. “How’d it go?” He asked gently. He REALLY didn’t need to ask. He just knows these things. I went into the kitchen with him and watched him make his lunch. I sit at the table still holding strong to my “I am NOT going to cry.” But it just came… I was so mad.. so very very mad. He asked me why I was mad. At first I thought surely he’s not being obtuse, right? Instead of getting upset at his question, I realized that he was just trying to get me to talk about how I was feeling. So I told him that I was mad because I didn’t understand why I was taking a medicine that made me feel so badly. Why do I have to feel bad before I feel better? I was pretty optimistic about this medicine before I started it. Don’t get me wrong. I haven’t given up but being in pain like this sucks bad.
My husband has been totally wonderful this weekend. After each treatment for about 3 hours, I get short of breath and breathing hurts. When I get up to do anything, I have to do it slowly because of the breathing problem and the pain. I just don’t have strength to do what I was able to do before the medicine. I’ve been on it 3 days now. Is this normal? I’ll be calling the doctor tomorrow. I’m only on the starting dose right now. I am suppose to raise the amount of inhalations next week. UGH!