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!

Two Months Post-Tx

It's two months post-transplant already! It feels like the time went by quickly, but it's hard to fully remember where I was before my surgery. My husband and I went for a big walk yesterday morning. We trekked to the Farmer's Market and then to a store for hockey gear. It was a good 4km round-trip, not to mention that we had bags to carry. Along our route, my husband recalled the week before my tx when I couldn't even walk down this same block- we had to use a wheelchair to get to the store I wanted. Crazy. It seems that memories of how hard things were, how sick I was, and how I couldn't breathe are starting to fade.

Earlier this week we checked out a pre-season hockey game. Again, memories of the last time we were at a game pre-tx shocked me. My husband had dropped me off as close as possible, carried me up the stairs where there were no elevators, ran back to the chair to exchange tanks... ugh. This time, I walked every single stair. We parked blocks and blocks away for free. I didn't run out of oxygen once! What an enjoyable experience. Plus my sternal precautions are officially off (so no more OT!) and I could cheer with my arms above my head!

Today my husband and I participated in the Edmonton Heartbeat Run for the Mazankowski Heart Institute. That's the new part of the hospital where I had my surgery and stayed in ICU. It felt good to be there and show our support. I did the 1km Walk with two of the other heart transplant patients that I know from the gym. I don't know my time yet, but I walked as fast as I could! My husband ran the 5km and did great. The scenery was spectacular with the leaves changing color. Next year, I will run the 5km!

Busy Weekend

It was a busy weekend and I definitely felt it at the gym this morning! We had lots of visitors this weekend, which was lots of fun! My sister and brother in law and nephews and niece came. I haven't had a visit with the kids since before transplant. I did technically see them in the hospital, through my window to the courtyard. It was ideal at the time- I rolled the IV lines and chest tube stuff out of view and waved at them so they knew I was alright.

We went out with them for lunch and then checked out West Edmonton Mall. West Ed is one of the world's biggest malls and has lots to do. We wandered around for a while, including a stop at the pet store to look at puppies! My husband and brother in law stayed to mini-golf with the kids while my sister in law took me back home for some quiet time before we went out for dinner.

On Sunday there was a fundraiser for CF that we all attended called Run for the Lung. Three more of our friends came up for the day to join us. Three of the guys participated in the 5K run. They all did great! It was hosted by a local pub and they put on a nice BBQ afterwards. The only drawback was the weather! It was brisk, but at least it didn't rain. We went for coffee with our friends afterwards to warm up.

At some point during the event, someone had told someone else that I was one month post-transplant. As everyone was leaving, a mom of a young CFer came up to chat with me. She said she was amazed how good I looked and wanted to hear my story. The nicest part was she asked if there was anything she could do for us, like make us a meal. We declined, but it was so sweet!

It was a busy weekend but it was fun. I missed both my naps, but it felt so good to do normal stuff!

GearUp4CF

GearUp4CF is a unique CF fundraiser. Starting in Vancouver, 19 riders will cycle 1200 kilometres in nine days, through three mountain ranges to Banff. Talk about an opportunity to raise money and awareness for CF! Each rider was expected to raise $5000 for CF, and this year's group total is over $110,000! The ride has raised over half a million dollars since it began five years ago.

The coolest part is... Kitty Chavarie, one of the participants, is riding for ME! Our connection is an interesting one. Kitty lives in Chemainus, BC which is on Vancouver Island. Kitty was looking for someone with CF to dedicate her ride to. She knew somebody who knew my husband's parents, who also live on the Island. They met each other and the rest is history! There was even an article in one of the Island newspapers about it.

Kitty and I are facebook friends, but I can't wait to meet her in person. It takes a special kind of person to take on this kind of challenge. I hope to cheer her on as she crosses the finish line on June 27th!

For more information about the ride, you can visit their website at gearup4cf.org or the blog at gearup4cf2010.blogspot.com. The riders are blogging as they go, so you can follow their progress. They are already on their way!