Happy Birthday to Me!

Today I turn 33! Most people dread turning another year older but for me it is a sense of accomplishment. It means I am continuing to beat the odds. I remember being 12 and being told that most people with CF do not make it to 18. So for me turning another year older is a blessing. I try to cherish everyday I am given.

How am I celebrating, you ask. At home with Brian, my dogs and movies. Hopefully, Brian will pick me up a cake on his way home from work. I had wanted to go do something special to ring in the New Year but I have been pushing my luck with my health. I figured the healthier decision was to stay home and rent movies. I am sure Brian would like to do more than watch movies like we do every weekend but he is a good sport and would not celebrate New Years without me. I love that man.

I have so much to look forward to in 2009. I will continue to feel blessed by everyday that is given to me. I will cherish everyday that I am not in the hospital or on IV antibiotics. I will be grateful for everyday that Brian and I both have jobs. I will never take any day for granted and I hope no one else does either.

I hope everyone finds a way to ring in the New Year with friends or family. It doesn't matter if you are at a big celebration or at home as long as you are sharing the night with people you love.

I hope everyone has a safe, happy and most importantly healthy 2009!

Christmas Eve

It does not feel like Christmas Eve. I have no plans for Christmas. I haven't done any shopping for my husband and I don't even have a Christmas tree.

I celebrated Christmas with my family this past weekend. I had two gatherings and they were both really nice. The only thing that would of made last weekend better is if we didn't have a blizzard that we had to travel in.

This weekend, I will go spend time with my Dad's family. We do a big family gathering with his mom, his brothers, his sisters and their families. So I will see many of my cousins, their spouses and children. I think my Nana will have 5 great grandchildren at this gathering. It will be nice to see everyone.

Next weekend, My husband and I will spend time with his mom, dad, his brother and his brother's family. We will go to his brother's house and do Christmas.

This year Christmas has been spread out over many weekends so tomorrow will feel like just another day. I think Brian and I might take a trip to LL Bean and do some shopping. Next year, I'll plan something on Christmas day so it will feel like Christmas.

I hope you all have a very Merry Christmas!

CF Appointment

Yesterday was my CF appointment. I go to the see my CF Doctor ever 6-12 weeks depending on how my previous Doctor's appointment went. Dr. Z was very happy with my health.

My FEV1, which is the amount of air you blow out in a second, was 1.22 liters. That is 40% of what the predicated amount that I should blow for someone my age, weight and height. For most people they would freak out because 40% is quite low but I am happy with that number. My last visit my FEV1 was 1.1 liters which was 36% of the predicted amount. So I actually increased. Yeah!

They also measure the capacity of my lungs. I don't remember what it was in liters but it was 61% of the predicated amount. That is also up.

My weight was the same. I was afraid I had lost weight but on their scale I weight 110. They would like me to be 120-128 but I doubt that will ever happen. My goal is 115 so I bought some whole milk and and going to drink 3 glasses a day.

Dr. Z was glad to see I was doing well. He wasn't sure he agreed with not activating me on the transplant list until yesterday. He knew I would prove him wrong. I am good at that. He feels if I can keep my numbers where they are I can stay inactive. He is also glad that everything is done for the transplant just in case I don't stay where I am at. CF is so unpredictable that you never know when that rapid decline is going to come.

I don't need to go back to Dr. Z for 3 months unless I get sick. I got to Brigham's in January and they will check to see if I need to be activated.

I will continue to do what I have been doing for the past 3 weeks to see if I can maintain my health. Wish me luck. The longer I can live with these lungs, the more of a chance that there will be a scientific breakthrough with either CF or chronic rejection after a lung transplant. In the mean time, I will keep fundraising so that I will be 100% ready when the time comes. The time may be 5 months or 5 years. Like I keep hearing, there is no crystal ball!

Tis' the Season

It is this time of year that reminds us how important it is to make sure people you love and care about know it.

I was shown this today. My mom, my aunt Esther and my friend, Andrea spent 5 hours selling homemade scarfs and jewelery to raise money for my double lung transplant. I really wanted to be there to show them how much I appreciate all they do but with the fundraiser tomorrow I need to make sure I don't over do.

I hope that all in my life know how important they are to me. I don't often say those words but I hope I show it through my actions. I try to be the best wife, daughter, sister, cousin, friend and co-worker possible.

A lot of people have shown their love and support for me during these trying times and I want everyone to know it does not go unnoticed by either myself or Brian.

I have been blessed by so many people in my life. The list is way too long to list. I am reminded everyday of someone that has made a difference in my life, whether is a telephone call from a best friend, an email message from a grade school teacher or a facebook message from a long lost friend.

I have a special place in my heart for all that I have crossed paths with in my life.

I love you!

For my Dad!

My dad was on my case because I haven't updated my blog. I have been busy trying to stay strong and healthy.

I have started to exercise again. When I heard that I needed to have a transplant, I gave up on my current set of lungs and got very lazy. I need to be in tip top shape to have an easy recovery from a transplant. So, I got off my butt and got on the treadmill. Since my last post, I have been really good about walking on the treadmill or outside. I also started doing some strength training with free weights.

I got through Thanksgiving without getting sick. This weekend, I have my husband's work Christmas party and then the Rock-n-Ink fundraiser. I need to be very careful that I don't wear my self down or pick up anything. It will be nice to get out of the house for a bit.

I have a Doctor's appointment next week. This will give me an idea if the exercise has cleaned out my lungs at all or if it is just getting me back into shape for the transplant.

FYI, I am on the waiting list but not active. At this point, B&W just needs to hit a few keys to make me active. I am taking things day by day. My insurance has been approved.

B& W just did a double lung transplant on a CF patient that was evaluated at the same time I was. He was listed the day before Thanksgiving and got the call for his lungs on Thanksgiving. It is amazing how fast it can happen. I am so happy for him. He needed the lungs and I am so glad he didn't have a long wait.

Well, for those of you wondering. I am no longer stuck in a rut. I am taking things day by day and trying to live as normal of a life as possible.

Happy Holidays!