12 month Update

It’s almost 2013 and I just realized I really haven’t posted a breathing status update in almost a year.

Probably the biggest change that I’m noticing, is that my dyspnea is getting more pronounced and more constant. Where I used get 8 or so “good” breathing hours a day, I’m down now to less than half that. Most of this dyspnea, I attribute to air-trapping, but I’m sure there’s some bronchospasm thrown in there as well. Because of this, my nebulizer usage has gone through the roof. On an average day, I’m now requiring a minimum of 6 neb treatments, and sometimes as many as 10. In about half of these treatments, I’m doubling the amount of albuterol. Of course, the need for around- the- clock nebs makes it almost impossible to get a restful sleep. I’m averaging less than 5 hours per night now.

Also been experiencing a lot more abdominal bloating, which when combined with lung air-trapping is not a good feeling. Ironically, the nebs treatments are probably making the bloating worse, as one tends to swallow more a lot of air during a neb treatment. For the longest time, I thought it was my diet that was causing the bloating, but now I believe its just a side effect of my lung disease. Still, to reduce it somewhat I’ve given up eating cereal and most bread products.

On the exercise front, no weight training, marathons or racewalking anymore, but I still walk 3 miles almost every day in 2 segments. The biggest difference now, is that even these shorter casual walks are difficult for me. I’m short of breath during every walk now. The fact that I’m doing these walks on an incline probably doesn’t help, but the town I live in is not flat.

On the clinical front, I have to have another chest CT in a couple weeks to see if a spot detected on an earlier scan is growing. The radiologist didn’t seem to think that it was big deal, but since I’m at higher risk for lung tumors they want to keep an eye on it. I’m also scheduled for another round of full PFTs. My most recent baseline FEV1 was 29%. My next appt with the transplant folks will probably be in January. If I don’t have any life-threatening flares before then, they’ll probably change my follow visits to every 6 months.

On a slightly more positive note, as bad as I’ve been feeling lately, I haven’t been hospitalized in nearly 4 months. Not sure why, but my guess is that while my dyspnea is worse, the actual asthma component ( ie the bronchospastic element) of my disease has been fairly stable. My pfs haven’t dipped into the red zone for months. Also at play I’m sure is the fact that I’m tired of hospitals.

But despite my not so great health, I refuse to live life in a bubble. I’m very excited about my upcoming trip to Churchill. Though I admit, I’m not sure how I’m gonna handle the whole medication/ neb thing. Because I’m relying on much more now on neb treatments to keep me going, I’ll probably have use it a lot during the trip. I think my breathing will be OK on the plane and trains, its the Tundra buggy portion of the trip that has me a little concerned. A 7 hour stretch is a long time to spend in such a small confined space out in the middle of nowhere when you have breathing problems. Hopefully, I’ll be so distracted by all the polar bear sightings, that I’ll forget any breathing difficulties I might have at the time. Luckily they have a restroom on board where I can sneak a neb treatment if I need it. I’ll also have my epi with me if I get super tight.

Take Care all!