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!

Back to Normal

I am back home now and back to normal life. My definition of normal, that is. Now I'm just waiting for the phone call to change my life! It feels good to be at home with my dog and my bed and my family and friends.

I have been doing my home exercise program all week. It's going pretty well. It takes a good two hours, but it seems like it takes all day. I need to rest so much between exercises that time flies. Like I said, I am happy to have a home gym. Some days my husband and I work out together, and it's nice to have company. My husband put a better tv in front of the treadmill as well. It definitely makes working out easier! I have been glued to the Olympics for a solid week now!

I really wanted to go to the Olympics back when the tickets first went on sale in the lottery. We almost bought tickets. We love Vancouver and we've gone out there every year since we got married. Now I can say that it's good we didn't buy tickets or make arrangements to be in Vancouver. There is no way I could leave now that I'm on the list, and I admit it wouldn't be as enjoyable with the way I feel- unable to walk very far and with a limited supply of O2. I still feel like I'm missing out though. At least the tv coverage is good.

I still try to go out and do errands or see friends, but it is still exhausting. I thought I might see an improvement after my exercise program, but I think it's about the same. I feel pretty good overall and I am keeping busy. I feel like there is so much to do before I get the call! From tidying around the house to packing a bag for the call, there's lots to organize. I am eager to push through and get as many things done as possible. I want to be ready when I get the call. Checking those little things off my list will help!

One More To Go!

Tomorrow is my last day in the gym. It's hard to believe that the six weeks are up already. I am excited to finish the program and return to my normal life, but I'm wondering if I'm ready. I feel like it's graduation day and they're sending me into the real world for the first time. I have focused on exercise for six weeks. I haven't done much in the way of socializing or being in public. I feel so sheltered!

My physio has customized a home exercise program for me. I got the chance to review and practice it already. I have decided to do my work outs at home. There are pros and cons to the home gym vs. public gym. At home, I love how little effort it takes to get to the basement where we have our equipment, but I admit that I tend to take longer breaks because no one's counting! I should put a clock on the wall. I find at a weight room, there are other people watching so I tend to push myself more.

At home we have a treadmill, a bench and some free weights. We are also going to purchase a bosu ball (for my lunges and squats) and a roller (for my back exercises). It works out well because both my husband and I can use this equipment.

I will finish my IV meds tomorrow! I am looking forward to being free of the extra tube and bag with my pump. This has been my longest course of IVs to date- 2 and a half weeks (18 days).

Overall, I'm really happy with the program and my progress. I feel stronger and I can walk with less effort. I also feel like I have had a chance to work through more of my tx issues. I have seen the ICU and know exactly what to expect at the gym. I have met some wonderful people and heard their inspiring stories.

I can't believe there's only one more day to go!

Five Out of Six

I am nearly finished my fifth week of physio. The antibiotics have kicked in this week and I am feeling so much better. Last week was really tough. Plus there was no sympathy- I was still at the gym doing the same routine every morning.

This week I am also feeling better about tx in general. Last week I started experiencing anxiety before bed as I thought about receiving The Call. I was also wired at bedtime, which appears to be a side effect of Cipro. Let's just say that's not a good combo. In comparison, this week I feel more relaxed and comfortable about the idea of surgery and recovery.

I have been feeling like tx is the end of my life as I know it... which is too dramatic, but kind of true. I am going to trade the only life I have ever known for something new. Even though my lungs aren't working well right now, I am sort-of coping and I know what this feels like. Of course, my condition could get worse unexpectedly and I am in no way independent anymore. They don't call it end-stage CF for nothing! The anxiety comes in because post-tx is the unknown, and I don't know what it feels like.

It has really helped me to talk to the post-tx patients in the gym. Although not all of them are lung recipients, their stories are fascinating. Some have had major obstacles and set-backs, and some have had a relatively smooth recovery so far. Their stories and encouragement have meant a lot to me. I have one more week to enjoy their company before the program ends!