Long Overdue Update

This update is long overdue - sorry to keep you hanging. I've been busy these last five months, and my one-year transplantiversary is in two days. I have often thought about blogging... but I usually write the post in my head and that's where it ends.

Last night, my husband and I ended up taking a trip down memory lane. We looked at pictures of my hospital stay post-transplant and I started to think about my blog. I started to read through it... and I'm glad to have it as a record. It was an emotional night though... it has been quite the journey to get to this point!!!

Let's start with the most important, I've been healthy! My check-ups have been about two months apart now and there have been no new issues. My diabetes is still annoying, with high sugars every evening, no matter what I do. My insulin injections sites still bruise, swell and cause scar tissue easily. The ring of tissue around my one anastomosis site is better, but still makes my breathing noisy when I exercise. I think it's because it didn't heal perfectly smooth, so the air bumps around when I breathe heavily. Both things are very minor and I'm feeling great!

I figure that I've been in a rebuilding phase since I last posted. I have spent time focusing on a couple of things: rebuilding myself physically, rebuilding relationships and rebuilding my surroundings.

So, I have been keeping up my daily workout. I do a walk/run every day. Lately, I've been doing it outside with my dog, which is the best. This week I actually doubled up my run! I also do weights daily, alternating between upper and lower body exercises. In March, I started going to field hockey practices. I was extremely cautious at first, letting the others players know to watch out for me. Games started outdoors in May, and I have been playing hard! I love being back! The other night, a player from the opposite team said I was too fast! I totally thought she was talking about someone else... I was so confused!

I have also spent a lot of time visiting with my friends and family. I love being the Auntie I want to be again. I have done all sorts of things with my nephews and niece, including babysit them (which I couldn't do alone before). I have been seeing a couple of friends on a regular basis, and they both have young children. So, as long as they're all healthy, we get together for lunch and outings. I have visited my old office a couple of times and lunched with my co-workers too! My husband and I have spent so much quality time together. It is absolutely priceless!

I have also devoted some time to the house. After two years of having no time or energy for it, things weren't the way I wanted them. You know, clutter, unfinished (or yet to be started) projects, and things lost their function. Continuing our renos will wait until the fall, but lots has been taken care of in the meantime. I have decluttered, organized, cleaned, donated clothes and household items (to Diabetes), had the house interior painted, had a garage sale for CF (our first and probably last... ugh... ) and more.

Other important things to note include our CF fundraisers. Again, we had a team of our favorite people participate in Great Strides. About 30 of us walked and raised $8700 for CF! Even more exciting... my husband participated in GearUp4CF! If you remember, last year, a woman by the name of Kitty rode her bike from Vancouver to Banff (for me) to raise money for CF. This year, my husband decided to do it. Since we overhauled our lifestyle post-transplant, we have been eating well and exercising. He is no exception! He purchased a road bike and started training. He is not a cyclist by any means, so riding a bike 1200km in nine days wasn't going to be easy! There were three mountain ranges to climb on the way, and the longest day was 190km. Plus the wind, rain, heat and exhaustion...

This year, the ride went in the opposite direction for the first time, from Banff to Vancouver. There were 14 riders along with four volunteers that drove the support vehicles and prepared lunch and snack breaks. My husband took his training seriously, and lost 50 pounds in the process. He also took the fundraising portion seriously. Each rider was expected to raise $5000 to participate. My husband won the Top Fundraiser Award, raising over $17,100 for CF! Along with personal donations from friends and family, we held a Beer & Burger Night at a local pub. With ticket sales and the silent auction, we raised $10,000! People were so generous and the night was a huge success!

The awareness created for CF (and transplant) was also a big success. Our story appeared in the local paper, complete with pictures! We were also asked to appear on a local breakfast show. We were interviewed about the ride, CF and lung transplant. Despite being nervous, it went very, very well!

The ride was a life-changing experience for my husband. Every rider had a connection to CF - whether they were riding for a loved one or in someone's memory. It was as much of emotional journey as a physical one. I couldn't be prouder of my husband. He set a goal to take on a huge challenge, and he did an amazing job. For the first time in years, I got to see him do something for himself. Sure, CF ultimately benefited (and therefore me), but he has a new hobby and sport, and it's all his!

I drove out to Banff to see him off. Some of our family joined us, and we provided the entire cheerleading section for the riders. All of the other riders had flown from their hometowns, so they didn't have any loved ones to see them off. I followed the riders to the first pit stop, cheering and taking pictures. The ride ended with a celebration at BC's Children's Hospital in Vancouver. I flew there with a couple of friends for the weekend. It was incredible to watch my husband, and the other riders I'd come to know vicariously, cross the finish line. It was an emotional reunion, and a truly inspiring day. I was asked to speak at the event, and I had the opportunity to thank all of the riders in my speech, plus share my story. I also met some very important people in the CF community, including Eva Markvoort's parents (Eva was in the documentary 65 Red Roses). It was a very special day.

In addition to the bike ride, which was one of the highlights for sure, we did a few other fun things. We went camping for the first time since 2008! It was awesome! The weather was hot, the mountains were beautiful and we loved being outside all day. Of course, I used ridiculous amounts of sunscreen, which is still so weird to me. I never used to burn! I also mowed the lawn a couple of times. My husband was out of town, so I figured why not? I had never mowed the lawn at our house before! I also went on my first hike in the mountains. It was harder than I thought, and I was frustrated that I was breathing heavier than everyone else. I still did it though! I also rode a bike for the first time, played baseball, flew on a plane, and painted the fence. My husband laughed when I asked him how to do it... but I had never painted before! I used to cough as soon as the paint can was opened, so I didn't even watch. It's totally different now!

So that's what I've been up to for the last few months. More thoughts on my one year anniversary coming up!

This and That

Another week of recovery is in the books! I had some visitors this week which was nice. My meds were adjusted quite a bit this week, and now my white blood cell counts is in the target range. My insulin was also adjusted... up and up and up. I feel like no matter what I do, my blood sugar is ridiculous before dinner. It's frustrating but I can't control it, the drugs are in charge!

Another CFer I met had their transplant! If you're counting, that was two CFers within a week of each other! I'm excited for when I see them in the gym later, and I'm even more excited for my CF friends that are still waiting. All it takes is one donor, one match. Hopefully soon!

In the waiting room for lung transplant clinic, I met someone who was 16 years post-transplant. How amazing is that? He said he was one of the first lung transplants here.

I'm booked for some of my three-month assessment tests in the next couple of days. It's a little early, but I think I'm doing well enough. On Tuesday I have a VQ Scan and a Chest CT Scan. I also have a Chest X-Ray on Monday. This week I will start attending my appointments and the gym on my own. All by myself. My husband will be heading back to work full-time (although he'll come with me for the scans on Tuesday). I feel so independent and all grown up! No more babysitters! I am very appreciative of my husband and other family members that helped me out every day up to now, but it's nice to be able to do it on my own! It's an exciting step in my road to recovery!

I feel like real life is creeping up on me. Slowly, I seem to be doing more errands and making more phone calls, doing more housework and more 'normal stuff.' I can handle doing the laundry again. I am preparing the occasional meal- something I haven't done for at least a year. I never cooked much to begin with, but it's nice to be able to. I tried vacuuming for the first time in two years. I walk to the grocery store nearly everyday for this or that. I take the stairs. Now when I see someone else wearing oxygen, it nearly stops me in my tracks while I can remember how that used to be me. Wow. How things change.

Insulin and IVs

For the last week we've been treating my old CF bugs with antibiotics three ways: oral, inhaled and IV. If we're lucky, maybe we can get rid of them once and for all! It feels weird to go back to the old CF routine, even it hasn't been very long since that was my usual. I almost forgot how time consuming it is! I get my IVs at the hospital IV Room, and for the last three nights I've also had a Magnesium IV. Might as well since I'm already there! Needless to say, it feels like I have spent too much time there already, and it's only the halfway point.

Things are going well in the gym. I am already lifting more on the leg machines than pre-transplant, and there's no comparison on the treadmill! Lately I have been riding the bike because my feet and calves are still sore and cramping. I hoped the Magnesium IVs would help with that, but it doesn't look like it. I just can't seem to keep my Magnesium in a normal range! I know that the Tac is the main culprit, causing the body to waste Magnesium.

My sternal precautions are sort-of off. I am now seven weeks post and can use my arms more. I still need to be careful not to lift too much or do things that hurt my sternum. I will be transitioning from OT to upper body exercises in the gym over the next couple of weeks.

My biggest complaint is the diabetes situation. I switched my long-lasting insulin to Lantus, which is supposed to last about 24 hours and be constant throughout (instead of having a peak). The blood sugars are still not awesome, but are looking better. I am now using a sliding scale along with carb counting. I think it's a more accurate way to go. I'm just sick of all the pokes. I check my sugar at least four times a day, and give myself insulin at least six times a day. I also break up the larger doses into two shots, otherwise I find they hurt. So usually that's more like eight pokes. That makes a grand total of about 12 needles a day. I am running out of places to stick myself! I've been taking 30 units with breakfast alone lately. Before transplant, I would have maybe 30 units all week! I hope that things improve with time and I'm looking forward to my prednisone dose decreasing.

Things have been going really well. I am so happy with my progress and the lung transplant program. My diabetes is my only complaint, which isn't much to complain about, I know! Again, I can't help but think what a positive experience this has been and how much my life has changed. What a gift.