GI Tests

I was booked for two tests today, a GI Motility Study and a GI Impedance Study. I prepared for the tests by not eating or drinking for six hours (so basically since bedtime). For the first test they thread a big tube down my nose to my stomach. It has lots of sensors and creates a picture of my esophagus and by swallowing sips of water they can see how well everything is working, including the two sphincters. Well, the nurse was a little cold and robotic. She rammed the tube (the size of my O2 tubing) quickly down. It was very uncomfortable, and I immediately begin gagging, crying and throwing up. I think she's used to people dry heaving on empty stomachs, so she had nothing ready for when I brought up loads of mucus that I must have coughed up and swallowed overnight. I threw up all over myself repeatedly until she finally gave me a towel. Ugh, it was awful and I couldn't help myself. After about 20 minutes I stopped coughing and could start settling down. I think the nurse panicked and the most experienced tech stepped in to continue. I did all of the swallows required, no problem. Pulling the tube was unpleasant, but it was out in a couple of seconds.

After a bit of recovery time, it was time for the next test. A thin tube was placed down my nose and positioned to sit above my stomach. The tech did a much better job inserting the tube, plus the tube was much smaller, so there were no issues. This tube will stay for 24 hours and is attached to a small computer that will record the pH, which determines if there's any reflux. I just need to press a button when I sit/lay down, start/stop eating, and if I cough, burp or have heartburn. It's a little uncomfortable because I can feel something stuck in the back of my throat every time I swallow. As long as I don't think about it too much, I'm okay with it. I had a wicked headache afterward and needed a nap. Looking forward to having the tube out tomorrow!!!

My clinic last week went much better and I left feeling like we had some solid possibilities to explore. First of all, I stopped the Spiriva. Secondly, I started an inhaled steriod, Symbicort. Thirdly, it looks like I have some form of sleep apnea. My husband has noticed that I stop breathing at night, which has developed in the last month or two. I will be booked for a sleep study at some point- I'm not breathing well to begin with, so sleep apnea is not a good thing! I continued to turn down the anti-anxiety meds, although we spent a lot of time talking about them. I did PFTs as well. My FEV1 was 27% and my FVC was 42%. No surprises there, that's what I expected to see!

Clinic

My sister-in-law took me to clinic today as my husband is super busy today at work. It was great to have her company. It's funny that she's helped me in the gym, get my port accessed, etc. while I was in Edmonton for my six-week physio program, but she hasn't been to my regular clinic yet. So today was a first for us.

I went into clinic today because I have been really short of breath. I'm SOB all of the time, even at rest. It's exhausting. I have been off IVs less than three weeks and I feel like I've gone downhill. I'm not coughing more or coughing up more, which makes my shortness of breath a bit mysterious. I wasn't expecting to be admitted today, but I was thinking maybe some home IVs would help or something different... I don't know. Maybe I could try some inhaled steroids or maybe there's something else out there.

I wasn't expecting what I was given, that's for sure. It was a prescription for an anti-anxiety drug. Don't get me wrong, I believe that drugs can help control symptoms and I'm not adverse to trying something new if there's a reason. But I don't feel like anxiety is my problem, I am short of breath! All I wanted to know is if this is my new normal, and it sounds like it is. It just seems like I got to this new point very quickly and I'd like to try to reverse it before I accept it!

I need to think this over and decide what I'm going to do. I am leaning towards trying to deal with this on my own before using the anti-anxiety meds. I've already made it this far without them!

This is not what I was expecting today, that's for sure! The first thing I did when I got home was repack my transplant bag for good measure!

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!

Clinic

It seems like I'm spending a lot of time there! My visit yesterday went well. I'm almost two weeks out of the hospital... but it feels like much longer. That's what freedom does! My pft's are about the same, and my weight has gone up. Again.

I am now officially back to the weight I was when I first came to the Adult CF Clinic at 18. The weight that is listed on my driver's license. The ideal BMI. I chart my FVC, FEV1 and weight at home to keep track. Over the last five years, my lung function has zig-zagged it's way down and my weight has steadily climbed it's way back up. My weight bottomed out in 2007 after our big Europe trip, and have have slowly put that 10 kg back on.

I feel like my weight is the one thing about my CF that I can actually control. I had always struggled with it as a kid, but as an adult something clicked and I could maintain a healthy weight. I still have to work at it, but it's nice to have one less thing to worry about. I can force feed myself, no problem. I am so lucky that my husband is an excellent cook. I admit I don't cook at all. But I will eat and give compliments to the cook!

Another thing that has made a difference is getting my CFRD under control. I have been diabetic for maybe four years, and started using insulin three years ago. I feel like I have that figured out. My A1C is normal and I don't have too many highs or lows. Of course, transplant is going to screw that all up, but that's no surprise.

I'm looking forward to eating my share of holiday baking!

Clinic Visit

I had my regular clinic visit today. Everything went well- both my PFTs and weight were stable. I have been feeling great overall since I got off of IVs mid-October, but this weekend I noticed a slight increase in SOB, cough and production. I'm keeping an eye on it. Everyone says how exhausting assessment week is... it often leads to a round of IVs. I'd rather be the exception and stay away from those!

All of the staff were excited to hear about my assessment. I had a few issues to take care of at clinic, including getting some referrals to see specialists before transplant. I also had to discuss what to take during my month off of Azli, the new antibiotic I'm on. It was decided that I'll take an oral antibiotic for the off month and see how that goes. I also had to get my monthly port flush today. It didn't flush well last time when I ended my IVs, but today it flushed easily. That was a relief! I even remembered to bring some emla to numb the skin over my port, and it worked like a charm. I didn't feel a thing!

Next visit is in one month!

Clinic Visit

I spent the morning at clinic getting set up with Azli and an e-flow. I've heard about these things through other people's blogs, but it's still very new in Canada. I think it's still in a study phase. Anyways, I'm willing to try a new antibiotic and hope that I notice a difference. It would be awesome to maintain the way I feel now for as long as possible! I also got my flu shot, #1 of 2. Once the H1N1 shot is available I'll be getting that as well.

Tonight I'm looking forward to getting together with some other CFers from my clinic. I don't know many CFers, so its great to get to know a few. It sucks that we are discouraged from hanging out together. Silly germs. That's the reason CF Camp got cancelled back in the early 90's. They figured out how cepacia was spread and they pulled the plug. It's too bad- I have so many fond memories of CF Camp.

The camp's location in the Rockies was beautiful and the counsellors were amazing. I still see a few of them around (small world!) Our CF Nurse always came along too. I remember how great it was to connect with friends from all over the province every summer. And the crazy pranks we used to pull! I remember how neat it was to see the older CFers and hang out with them. I remember how everyone crowded into "the pit" of one of the cabins to do nebs and physio as a group. I remember how there was a weigh-in at the beginning and end of camp... leading to Pig of the Day and Pig of the Week awards. I remember how it was free so everyone could afford to go. I remember how it was a special time with special people. I'm glad that I got to experience it.