Back to Clinic

I have had several doctor appointments since I've been back. I saw an ENT who suggested I start using sinus rinses. I used to rinse my sinuses a couple of years ago, but didn't find it productive. I am trying the NeilMed product as opposed to my old school 60cc syringe and homemade solution. It looks like this will be a permanent part of my routine, as after tx I will need to keep my nasty CF bugs in my sinuses and out of my new lungs.

I also had a pleasant clinic visit this week. It was nice to see the whole crew again and update them on my progress. My weight continues to be right on target and my PFTs are looking pretty good right now with an FEV1 of 32%. I think I can contribute my good numbers to recent IVs and all this exercise! It's so obvious that a 32% today looks nothing like a 32% a year or two ago. Despite the numbers being the same, I am in a very different place.

I will also be switching up my antibiotic routine. As much fun as it was to try something new, I wasn't impressed with Azli. I love the e-flow, but I can do without all of the throat irritation and unproductive coughing I get with Azli. I didn't find it very effective overall. So I'm back on my old Tobi schedule- two weeks on, two weeks off. During the off weeks I'll be on cipro, which I haven't done on a regular schedule for years. We'll see how it works!

As I was leaving the clinic, I couldn't help but think about how short my visit was! It's nice to go home afterward and not be admitted! Let's keep it way!

PFT Fun

This morning I had an appointment for full PFTs. I don't think I've ever had such a hard time doing them. I have been coughing non-stop since 2:30am and I'm tired! The only reason I know that is because my husband told me... I didn't wake up until 6:30! I always wake him up when I cough at night but I usually sleep through it. Sorry about that. Anyways, despite the crazy coughing, my FEV1 was 27% pre-ventolin and 29% post.

The reason I needed to do PFTs outside of clinic was for my transplant centre. They called last week and said the PFTs they had weren't complete. I also needed to do them for my oxygen funding. In Alberta, the government pays 75% of my oxygen & supplies costs and I have only been approved until mid-December. I was surprised that PFTs were acceptable, because in the past they've done an arterial blood gas or a walk test.

I am getting anxious to hear back from my transplant centre. If everything goes according to plan, they will be reviewing my assessment results this week. I should hear back soon whether I'm a candidate or not for lung transplant. I am expecting good news, but I am still anxious!