I had been dreading this visit to the clinic because I could tell I was having more difficulties. I’d been coughing more, and had felt bad enough and had enough colored sputum that I contacted my CF doctor to get a course of antibiotics. I did a run of Cipro, and started Cayston a little early. I could tell it helped, but I was anxious because I didn’t know if it had helped enough to keep me out of the hospital.
One of the first things my doctor asked was if I’d be open to going on IVs again. I am open to it, but only if it’s the absolute last option. I have not had great experiences, as you can read here, and I think that it’s best that I stay out of hospitals as much as possible. But just the mere mention of it sent me into depression. If I had to go in, not only would it be another 3 weeks or so not being able to do much work (limiting weight lifting in the arm with the PICC line to 5-10 pounds) and probably not being able to garden or do housework (using the arm plus disease vectors), but it also meant I would have to pay another $1000 plus out of pocket. I do not have that in my budget right now.
So for the past month, I’ve been trying to push myself even harder but mostly it has been mental work. I’m trying to put in more hours at work right now, and between my meds taking over two hours a day (many days much closer to two and half or more), the daily and weekly chores, trying to fit in the cardio workouts, and yoga, and weight lifting, and reading, I felt more and more like I was running on empty. I just could not fit it all in to my day, and I was scared that it was going to take a toll on my physical health as much as it was mentally. So I made a decision, that no matter what I was going to California next month. I decided I couldn’t let not knowing what my numbers were going to be affect the plans I had made. If my numbers were that bad, I would just wait until I came back to go in. Besides, maybe my numbers weren’t that bad and it would all be a moot point.
I was nervous and woke up early on Friday, the day of my clinic appointment. My appt. was at 10 AM and that meant leaving the house by 8:30. After doing my hour and a half of nebulizer treatments in the morning (Hyptertonic Saline mixed with Xoponex, Pulmozyme, and then Cayston), I ate a quick breakfast and did about 10 minutes of Zumba on the Wii. I finished getting ready and got to the clinic just a little late due to road construction. PFTs (pulmonary function tests) were first, and I was a little nervous-but the techs are always so great to work with. I like to watch the screen as I breath into the machine. I think it helps me to push myself harder when I can see how much further I have to go. Three tries and I’m done- I anxiously scanned my results to see my FEV1- and the number I thought I saw was low. My heart sank as I thought I saw a 42, which would mean another trip to the hospital for another “tune up”. I asked the tech if she could tell me how I did- and she said you are pretty much right where you were last time. “I am?! What’s my number?” I asked a little incredulously, and she replied that my FEV1 was 52% – just a little down from last time but not by much.
I was so relieved and almost cried. That I was “stable” and had not had a significant decrease in lung function was such a release mentally. My doctor only brought up the idea of hospitalization as saying that I did NOT need it because I was stable. Everything was looking good, and other than the respiratory therapist wanting me to exercise more (particularly cardio) nothing needed to change. I did decide to try a prescription of omeprazole to see if that could help settle my stomach a bit as it has been more upset lately. Although, I wonder if any of that can be attributed to the increase in stress.
After talking it through with my doctor, we also decided that I would try the Tobi podhaler. It’s a powder form of Tobramycin that you inhale twice a day. It’s a much quicker treatment than the inhaled nebulized solution. However, I still have concerns about becoming ototoxic to it, because I just feel as though the coincidence of my developing vertigo for the first time ever while on it is a bit much. Also, when I was on the Tobi IV, we had to pace my treatments out to once every 36 hours versus the once every 24 hours other patients typically take. My doctor advised me to keep a close eye on myself for any changes, and to stop immediately if I develop any of the same symptoms.
The goal of trying Tobi is to 1. hopefully cut down on the number of infections that could affect me and 2. potentially help raise my FEV1 higher (partially as a result of fewer infections) so that next year when the new Vertex drugs become available, I will be in the best possible position to take full advantage of them. With the new drugs, even though the average increase in FEV1 was about 4% (not a huge increase) the other advantages may be even better- fewer infections, increase in FEV1 (greater than 4%) and decrease in digestive issues (weight gain for most patients). I don’t need to worry about weight gain, but fewer infections could at the least, keep my numbers stable for many years to come. This drug looks very promising and could lead to more breakthroughs in treating CF. What is different about it is that it is trying to treat the underlying problem that the CFTR gene causes- rather than just the symptoms.
So all in all it ended up being a routine visit, but I am happy with that. The goal is to be stable for as long as possible.