So I had my three month follow up visit, and everything is still good!
The bad news is, my allergies are going crazy right now, and it’s most likely causing the congestion in my trachea and sinuses. It doesn’t help that Richmond is considered #8 out the 10 worst cities with allergies this year. Ugh. Also, I’m already doing almost everything that has been offered as an option (in terms of prescriptions and medications) that can help relieve my symptoms. My Dr. did however, tell me that the best way to take Nasonex, is to do a sinus rinse first, wait fifteen minutes, and then spray. The worst part about my allergies is that I keep waking up at night, coughing from the drainage down the back of my throat. I can take sudafed or benadryl and that helps me sleep, but the down side is that I still have drainage, but instead of coughing it out, it ends up in my lungs and can camp out there for a while.
The good news from my visit is my numbers are still holding strong! My weight has remained steady (which I have been tracking every day, so I knew that was going to be OK), and my PFT’s are at least remaining stable. Due to a scheduling mistake, I saw my Doctor before I did my PFTs, and she prepared me by saying that it’s very common to for the numbers to trend down again. The IV’s, she reasoned, give your body a great boost, but then you settle down a little into where your numbers will (hopefully) stay even. I could tell though, that my numbers should be close to what they were because I was feeling good, and I could tell I was doing better with the increase in exercise.
With the increase in exercise, it would be really easy for me to lose (too much) weight. But I’ve been careful in listening to my body and when it says I’m hungry, I eat. I’m also fortunate that I have continued to feel good, and not had more than maybe one small cold (and allergies) to bog me down over the last three months. When I don’t feel well, I don’t eat as much as I need to and I can lose weight fast. For example, in college I got sick with the Coxsackie virus, and had sores on the inside of my mouth and throat. It hurt too much to eat, sometimes even swallow, and in the week that it took for me to get properly diagnosed I had lost 15 pounds. That was enough to send all my numbers low enough to warrant my second ever visit to the hospital for a tune up.
But in this visit, not only is my weight staying even, but so were my PFTs. So this time, my doctors wanted me to do a Pre- and Post- bronchodilator PFT to see how much I may be affected by asthma-type symptoms (narrowing of passage ways vs. obstruction with mucus). My Pre-PFTs were pretty good, and my best FEV1 was at 54%- compared to my last visit at 51% I think that’s great! But here’s where it gets really exciting (to me anyway). My post- FEV1 best was 59%! My goal that I wrote in my last CF-related post was to get to 60% this year. I am so close and now I know I can do it! I attribute this increase in my FEV1 with exercise. I’m sure increasing the strength of Advair I take has helped too, and seeing the numbers go up a little after the bronchodilator, there is some asthma-like symptoms that are contributing as well. I still have a fair amount of obstruction though, which means all my numbers are still a bit low. BUT that is another reason why exercise is so important– I move stuff around and hopefully get stuff out.
My doctor didn’t make any changes to my regimen this time, but I am going to try to increase the amount of cardio I’m doing. I’ve got to look at my journal and crunch some numbers, but only about 30% of my exercise in the last two months has been cardio-based. (Roughly 1/3 was weight training and another 1/3 was Yoga). The biggest challenge in doing this will be making the time. It can be difficult to carve that much more time out of my day when I already spend an hour to an hour and a half doing my nebulizer/air vest treatments, getting enough sleep, and feeling up to doing something after a full day of work (mostly on my feet).
I know I am not the only one who thinks that sometimes it can just be so hard to do what I need to. To exercise, to move my body through space, to breathe. Sometimes I feel I have to pull the energy out of nowhere to do these things. Every couple days I’ll give myself a day off, but I always have to push myself. Out of my routines, I think that Yoga is the most fun, and easiest to find time for. Walking on the treadmill is not bad because I can read while I walk. I’ll be honest in that weight lifting can feel like a chore, and Zumba, while very fun, can be frustrating. I am so glad I got Zumba World Party because it really is fun and interesting to play. My frustration lies in my inability to sometimes get through a whole routine because I start coughing. But it’s also good because it really helps move stuff through my lungs. But to actually spend about 20 minutes doing routines in the program, I actually spend closer to an hour of time between choosing songs and stopping to cough and bring stuff up. I have been using the quick play feature because it does one song at a time and only lasts 2 minutes- which is about perfect for me to get a good cough. Play, stop, cough, play, stop, cough.
I’ve also been counting other things as exercise, like the hour and a half walk/hike I took with my visitors last weekend. (The pictures are all from that walk, around Belle Isle on the James River). And I can definitely tell I have better stamina than I did before. So all these things add up, and I think I will continue to meet my goals as long as I don’t get sick.