Time Flies!

I think I'm due for a bit of an update. The last few weeks have gone well in terms of my health. I had a run-in with CMV, but after a couple of weeks of oral anti-virals, it's gone again. Otherwise, I'm keeping up with my workouts, meds, sleep, and I'm even eating better. I have probably eaten more vegetable this year than I did all of last year!

I was so relieved to say goodbye to 2010. What a year. It was full of challenges, but great rewards too. I'm glad it's behind me and I can get back to the business of living.

I have been enjoying time with my friends and family. I have been out and about doing errands, going grocery shopping, and getting things done around the house. I made myself a giant TO DO list and I have been working hard to cross things off. After two years of being sick and letting things slide (or more accurately, these things fall off the priority list) it feels good to start catching up. I found a great book on uncluttering and it's been motivating me to organize and get rid of things. Yay! I have also officially read my first novel in over a year. It's an awesome feeling to get back to the things I enjoy!

I still struggle with joining the real world. Some days I think I fit in and can keep up, but other days are a challenge. I went back to my office for a social visit. It was as though nothing has changed, but everything has changed. It was a little strange, but I was happy to see everyone. They have been so supportive through the last couple of years.

I feel trapped in between these two worlds sometimes- I have had my transplant, but I have three good friends (all CFers) still waiting. It's a constant reminder of how far I've come. One of my friends has had two dry runs already, which is unusual for our hospital. I can't imagine how tough that is mentally and emotionally. I never thought I'd have a dry run, and luckily I didn't. Another friend is hoping for a regular ol' transplant but doing the work for a living donor transplant- where one lobe will come from one family member/friend and the second lobe from another. She's a lot like I was- on IVs like clockwork! And my third friend has been living in the hospital for six months (exactly today). She will stay there until she gets her transplant. Things have been very challenging and complicated for her. I want all of their transplants happen soon. I want them to be on the other side with me.

I passed my six month anniversary a couple of weeks ago. It was a normal day, but it's hard to believe where I was six months before. It really is unbelievable. I will be going for my next clinic on Tuesday and I am expecting another bronch to dilate my airway again. That tissue has definitely grown back. I can hear it when I breathe and feel the resistance when I exercise. Otherwise, I expect a six-month walk test and the usual PFTs, xray and port access. My appointments are about a month apart at this point, which is fine by me.

I am making all sorts of goals and plans for the future. I'm excited about the possibilities and what I can accomplish. I am so grateful and happy that my husband can have his life back too. I can't wait to see what this year brings us!

Merry Christmas

It's been a while since I posted, but things have been going so well and I've been busy with other stuff! To be honest, I have a harder time sitting at the computer and focusing, so I haven't been on it nearly as much.

I have been back for a couple of follow-up appointments, and my only concern at this point continues to be that ring of extra tissue that keeps growing back in my airway. So that means regular 'surprise' bronchs to dilate the area. I should really be catching on by now and planning for a bronch every visit!

My 30th birthday was back in November and my husband planned an amazing Birthday/Welcome Home party with friends and family. I had absolutely NO idea and I was very touched that everyone was there for me. Quite a few friends ended up sick at the last minute and decided not to come. That was too bad, but I appreciate that they cared enough to keep those bad germs away from me! So many people complain about hitting the big 3-0, but I see it as an accomplishment. Sure, we're all getting older but it's an achievement to pass a milestone.

I have gotten back into one of my hobbies- scrapbooking. I am about two and a half years behind, but that's okay. I didn't have the energy, motivation or creativity to do it while I was sick. Now I'm exited about catching up and getting back to doing the things I enjoy. Reading is next on my list! I have a huge stack of books collecting since I was sick and I can't wait to dive in.

The freedom has been wonderful. From cleaning the house to Christmas shopping, I feel like I can do anything! The last two years I was in the hospital in December and didn't do much shopping. It was fun to take care of all of it this year.

I love being in the Christmas spirit, which hasn't happened for the last couple of years. It so wonderful to celebrate with family. However, I can't help but think of my donor family at this time of year. Today is exactly five months post-transplant. The donor family must be having a difficult Christmas without a loved family member. A couple of weeks ago while driving along the edge of the city, I saw a man standing on the side of the road taking pictures. At first, I didn't know why. Then I saw the white cross in the ditch with a santa hat on top. I totally broke down crying. Was my donor family doing the exact same thing somewhere? The chances are good. I just hope that they know how special the gift of new lungs are to me, and my family. I hope that's a comfort to them.

I wish everyone a Merry Christmas and happy holiday season. I hope that you are able to enjoy time with your family and friends, whether you are at home or in hospital, post-transplant or waiting for that precious phone call. Merry Christmas!

Home.

My posts seem to be getting fewer and farther in between. That seems to be a trend with most of the blogs I follow- we all had our transplants within a few months of each other and we are spending time doing other things. I think that's a good sign.

Since my last post, I have come back home! I officially finished my three month program on Oct. 22nd, but we stuck around town an extra week. On the 29th, I was supposed to spend the day packing up our apartment and getting ready to leave. Instead, my breathing changed and I spent the day at clinic. Bloodwork, xrays, PFTs, and finally, a bronch. Oh joy. My PFTs had dropped 20% in a couple of days. It's crazy- even with a bad infection pre-transplant, my numbers would never drop so quickly. It scares me, and makes me stop again and think how precious and precarious this gift of new lungs can be. What if I had ignored it? What might have happened?

The bronch revealed that the ring of tissue around that anastomosis had grown back. It was dilated again, but we suspect it will continue to cause problems. Something to watch for I guess. We also took biopsies that were fine.

I stayed the weekend and returned to clinic on the 2nd. It was disappointing, because my motto had been 'home by Halloween.' No such luck, but not a big deal in the grand scheme of things. On Tuesday, my PFTs were back to normal and I was given the all -clear to go home! After nearly three and a half months, I was going home!

Our house was full of surprises, including a stocked fridge, bouquets of flowers, and a display of welcome home cards and artwork from my niece and nephews.

I have been busy around the house, unpacking and cleaning. I drove for the first time, which felt great. I am exercising everyday, both treadmill and weights. I am taking my dog for fabulous walks, to places in the community that I haven't been for a VERY long time! I am going to the grocery store by myself. I have met up with a couple of friends for lunch. I celebrated my niece's birthday- and we determined that I haven't gone upstairs in their house for over a year. A year! No need to avoid stairs now! I took the garbage out for the first time in ages. I raked leaves. I don't park in the handicapped spot. I went to the new Super Walmart for the first time- it was too intimidating with my oxygen, but I walked to every corner of the store to check it out. I went to the library for the first time this year- I was too worried to have books out if I got the call, and besides, I couldn't concentrate enough to read. I can get so much done in a day. It's easy to get caught up in a task, and then stop to think that this was something I couldn't do before!

I am still doing Tobi, so I haven't completely erased my CF lung routine. It's still a bit of a pain, but a minor one compared to the full routine! It was a nice feeling to go through my med drawers and get rid of the meds that are expired or no longer needed. I only wish that Alberta had a program where I could donate this medication for reuse. It looks like these programs are common in the US, but only a couple of provinces are experimenting with it. Oh well.

It feels so good to be back home!

Ready to Run!

Awesome news!

I ran on the treadmill today in the gym! I only ran for one minute at a time, but it felt great. My legs even remembered how to do it!

It was a pretty cool experience. As I increased the speed on the treadmill and started to increase my pace to a jog, everybody in the gym stopped to watch and cheer me on. I think I impressed a few people, including myself!

Now that I know I can do it, I will add running to my workout schedule a couple of times a week. I don't want to go too hard and injure my feet or legs, but I'd like to slowly increase my endurance. I have to get back into field hockey shape somehow!

Three Months

It's been three months since my surgery, as of yesterday. I can't believe how quickly the time has gone! I guess the changing seasons help me to realize how long it's been. Summer and Fall have come and gone, and yesterday we woke up to snow. It looks like Winter has arrived! I don't think I'm ready for it yet!

I officially finished my physio program on Friday, but I'll be spending one extra week in the gym by choice. I did a six-minute walk test last week and I was able to walk twice as far as I could pre-transplant. It's amazing. I also had my last doctor's appointment, with my next one scheduled in two weeks. I will continue weekly bloodwork for a while to monitor my drug levels. Since stopping the VFend, my Tac levels have dropped so we've doubled my dose. My white blood cell count is also very low (for a second time) so I'm holding another immuno-suppressant for a couple of days to try and improve that.

I finally did it... and wrote my letter to my donor's family. I have thought about that letter every single day since transplant, but it was still hard to write. I wanted to make sure I said everything I wanted to and didn't leave anything out. I hope the family appreciates the letter and I hope it helps them have closure. I would love to receive a letter back from the family one day, but I have no idea if that will happen. Time will tell.

Over the weekend I noticed that my blood sugars started running low, which certainly hasn't happened in the last three months! I had been worried that I wouldn't feel the symptoms anymore, or that they'd be different, but I was able to identify the problem pretty quick. It looks like my body is slowly readjusting, and I have been able to scale back on my insulin. This is really encouraging! I was starting to worry that I'd be stuck on 80 units of insulin a day forever!

I have noticed a couple of other little things that make me happy, like my fingers becoming less clubbed. They weren't too bad before, but they are definitely reversing themselves!

I have noticed a couple of little things that bother me too- mostly minor side effects of the drugs. My blood pressure is high for the first time in my life, but I started a med to control that. I have had a harder time concentrating lately. I used to enjoy watching tv and being on the computer, but now I can only handle small doses, and I'm usually doing something else at the same time. I'm still always thinking about food, but I'm trying not to eat everything in sight! Time to learn how to like veggies for snacks! Since transplant, I have been obsessed with dill pickle chips. I liked them before, but they weren't my favorite and I only had them the odd time. Now I can't leave the grocery store without another bag- just in case I run out of chips at home. That would be a disaster! I also used to go to McDonald's at least once a week pre-transplant, and I haven't gone once since transplant. I haven't had the urge at all. Isn't that strange? I'm thinking it's my new lungs!

With the first three months gone by so quickly, I can't imagine how fast the next three will pass. It's hard to guess what's in store for me these next few months... all of the rules we've lived by no longer apply. I'm so excited for my new life!

Another Bronch Down

It's been a very busy week. I had an sort-of unexpected bronch on Tuesday. It wasn't decided if I'd have a three-month bronch, but I started experiencing a couple of changes and we decided to go ahead with it. I'm glad that we had a little look. As it turns out, one of the anastomoses (sites where the new lungs are sewn onto the old airway) was growing some extra tissue. Since it was useless tissue, a balloon was used to stretch it out and break it up. Otherwise, everything else looked great. Yay! I got a couple of pretty cool pictures of my insides as a souvenir.

Of course, my two best friends had just arrived to visit with me, so we had to cut it short. It was too bad, but priorities I guess!

Although all of the cultures aren't back yet, I'm on oral Cipro and some IV Meropenem. It's made for some long days sitting in the IV Room, but it's worth it. I have also stopped some of the precautionary meds like the anti-fungal and the anti-viral. As a result, some of my immuno-suppressants needed to be adjusted as well.

It's my last week of physio starting tomorrow. I can't believe it's almost been three months already. I will be writing my donor letter this week. I have felt so much pressure to write the perfect letter. It always sounds good in my head, but it's another thing to put it on paper!

I know we shouldn't compare ourselves to others in recovery, but it's always so interesting! There were four others who had their lung transplants the same week as me (it comes in waves!) Of the five of us, I am by far the youngest. I wonder who else will be allowed to go home on schedule, after the three months of recovery. All of them are basically still using a wheelchair to get around the hospital. I know we all have our own paths to walk, but I wonder how much is effort and how much is luck. I have been fortunate for sure, but I have pushed myself. My husband has pushed me. My family and friends have expressed their support and it motivates me. I feel bad though, especially for those who have had complications. I hope they will be able to go home soon.

Another CFer got lungs last weekend! That's now three of the seven that are waiting. Good news!

Thanksgiving

We had a great family dinner yesterday on Thanksgiving. It was nice to see everyone altogether. It was also nice to chat all I wanted, walk to the grocery store to pick things up, help carry stuff out, and the list goes on. My mother-in-law gave a fantastic toast about how strong I was through everything, and it brought tears to my eyes. I am so thankful to have such wonderful family, friends, puppy, and new lungs. Thank you donor and family. You have changed my life.

It was another busy week with those tests (which went well as far as I know). I am starting to feel a bit worn out, but there's only two weeks left of recovery in the gym. Although it's been great to have a routine to keep busy and get used to all this exercise, I am looking forward to some flexibility and a change of scenery!