Monday, October 3, 2011

And we're off Cayston

That lasted all of 3 days. We switched to Cayston because Drew's doctors felt that having him on inhaled antibiotic would help us to continue the pseudomonas eradication process. Tobi didn't work for us, as it threw him into bronchospasms. Cayston was worse. We almost ended up in the ER today and if I'm being honest, I could have predicted that when we started the medication on Saturday afternoon.

Saturday morning we got a huge package in the mail that included an entirely new and different nebulizer machine, a giant box of medication, a sterilizer machine and, thankfully, a DVD explaining what to do with all of it. When we got it all figured out and got Drew hooked up to it, we thought we were home free as this machine administers the medication in just about 3 minutes. Well, that first 3 minutes was the longest and close to the worst 3 minutes of my life. The mist is so thick and dense that comes out of this machine that Drew was literally acting like he was being suffocated. Martin and I were both holding him and bracing him and he was fighting for his life, thrashing about, turning purple, doing everything in his power to get that mask off of his face. We felt it necessary to try to get the antibiotic into him, especially since a 28 day supply cost just over $6,000. Waste not want not!

The next dose wasn't quite as bad, but we were noticing shortly after giving it to him a tightness in his chest. He was doing a lot of coughing but it was all a very dry cough. His breathing was very labored and noisy. We were using a lot of Atrovent to try to open him up on Saturday and Sunday, and then today it finally all came to a head. He again fought for his little life as we tried to complete this 3 minute therapy this morning. By lunchtime, he had used his inhaler several time (prescribed to be used no more than every 4 hours). I had to do the medication again right after lunch and he simply couldn't handle it. I am not exaggerating when I tell I felt as though he was being suffocated by this medication. He got it off a couple of times and I finally gave up. I put him down for a nap and he cried and coughed and gasped for air for 45 minutes before I gave him a double dose of his Atrovent. I tried again for a nap but he couldn't pull it together. He was beat red, retracting around his ribs, and so unsettled.

I called his doctor and they said to stop the medication. The prescribed a steroid to try to relax some of the inflammation and bring him back to even. They also said that if he was needing Atrovent more than every 4 hours then he needed to be brought into the hospital for observation. My hesitation with going to the hospital is that 1) he ALWAYS picks something up when we are there and 2) if you're not going to do anything different than I'm doing here, why do I need to be there. They "monitor" him. The only thing they would do for him that I'm not is giving him oxygen if necessary. They say that they can administer the Atrovent more frequently if necessary (which I don't know why I can't do at home).

I was worried about him all day. It may seem silly that I didn't take him in, but being in the hospital is no walk in the park. I was close today, but with the help of his doctor and nurse, and my wonderful husband keeping me calm and reasonable, we got him to a comfortable level of of breathing both for him and for me and got him his steroids and got him to sleep. I'm hopeful that without that inhaled antibiotic (without any inhaled antibiotic) for a day or two, his airways will recover from whatever distress they were being caused and he will be back to himself. My fear is how we will deal with things like pseudomonas if it continues to stick around, because its most effectively treated with inhaled antibiotics. I will try not to worry and cross that bridge when we come to it. Maybe he will be older and better able to tolerate them by then. Maybe the pseudomonas will never come back. Maybe they'll find the cure before he ever needs to worry about this again. A girl can dream...

1 comment:

  1. I do not have CF. I'm a 70 yr old woman with severe bronchiectasis. My pulmonologist specializes in adult-CF and that's been a blessing for me as most pulmonologists appear to only know COPD in former smokers.

    I was put on Cayston in late June. My doctor did this as I'm down to one oral antibiotic for pseudomonas infections and we don't want to use it too often. Amazingly, he manages to get my insurance to pay for Cayston!

    The first week, I thought it was really helping me. I felt better and my pulmonary function increased. Then I got a very bad case of thrush. I've had it in my mouth when on both antibiotics and prednisone before, but this was in my throat and esophagus. I was put on an oral anti-fungal. A few days later, my pulmonary function went down the tubes. I was also having bronchospasms, not when using the Cayston, but at other random times, especially at bedtime. My SATs dropped and dropped and dropped. I was on vacation for 21 or the 28 days I was on Cayston. When I finished my course, I felt great.

    Saw my doctor when I got home and he was thrilled at how my lungs sounded. I told him I was concerned that the Cayston made my SAT's drop and he thought it was something else. I started my 2nd round of Cayston the next day, and within 3 days, I couldn't breath. I hung in as I was hoping that my body would become accustomed to the meds, but often my SAT's were in the low 80's - one can barely function at that level.

    I finished the course and a week later saw my doctor. I told him I felt like the old joke, "the operation was a success but the patient died"! Clearly, the Cayston clears out my lungs and clears the infection, but the side effect of not being able to breath is a bit profound for a drug one is to take the rest of ones life.

    We decided to try a lower dose. I'm not taking it only twice daily (AM and PM which is easier anyway), and each time I take it, I use an insulin syringe to draw in 1/3 the regular dose in the bottle with saline added. I then put that in the nebulizer and throw out the rest (kills me to throw out such an expensive med!).

    The side effects are less than before, but they're there, in particular, the bronchospasm. My SATs were in the mid-90's when I was off the Cayston; now they're in the upper 80's, so I have lost function.

    Has anyone else experienced this? I will admit I'm the poster child for adverse reactions to drugs, but I had such hopes for this one and my health was deteriorating significantly. I'm an otherwise totally healthy woman in good shape (pulmonary rehab 3 times weekly).

    I'm terrified to try Tobi as hearing loss would be a death sentence for me - it would totally change my life for the worse. I've done IV antibiotics before and they really didn't help. Should I just tell them to open the grave?