Well, I have never blogged before and I don't know if I'll even have any followers but it's something I wanted to try. This blog will be a sort of outlet for me as I am a 33 year old CF survivor and 9 year post transplant patient and as those numbers increase I am becoming more and more thankful for my life. On the other hand, as those numbers increase I become more and more worried about my future. Being that I've already had a lung transplant, last November was 9 years, I have to worry more and more about the day when my body starts to reject the lungs that saved my life. It's a harsh reality, but one that I must be ready for. It's so hard to think beyond today when I'm healthy and happy. There are always reminders in my everyday life. Some reminders are much more in your face; like a memorial service for a dear friend. Blogging for me is a way to get it all out there. I want to write down everything that's going on health-wise, home-wise (it's just me, the hubs, Casey, and our two cats, Lex and Mia), basically just everything. I haven't kept a journal in years and I'm excited about sharing even if it's only with myself.
Things have been crazy these past few months. We sold our first house in October and bought a new house in December. We ended up moving into a tiny furnished apartment (we're still here) while the new house is being remodeled. Apartment living hasn't been bad but Casey and I are going a little stir crazy. The cats are terrorizing each other and making our lives a little more difficult with their bad behavior. All of our stuff is in storage--it has been since October. Our house is almost finished (so says the contractor) and we hope to be in by the first week of February. It's been pretty tight in the Schmidt household this month as we had to make a rent payment and a mortgage payment. This cannot go on again in February! Casey's really done a lot on his own with the house. He's really amazing me with his DIY skills. His made a few mistakes but for the most part he's accomplishing all that he set out to do. I must admit that when we first saw this house (it was a foreclosure) I was adamant that it was NOT for me. Eventually, I came around and saw the potential. It's transitioning nicely, but it will need more work throughout the coming months. That's not a big deal, I'm just incredibly thankful that I have a house to come home to.
All of the house stuff has been a little stressful for me. I'm a typical Type A personality so it's hard for me to adjust to change. I, of course, want to know ahead of time what the change is going to be so I can plan for it. Life doesn't work that way, Dana. : ) It has taken a little toll on my health, too. I've been very lax in my exercising---so, so bad for a lung transplant recipient, and my PFTs (pulmonary function tests) have taken a small drop. I had an appointment yesterday and I when I was blowing I just knew they weren't as good as they could be. I got a wee bit scared but my doc doesn't seem concerned because my PFTs rise and fall all the time. He showed me my history from way back in the day and it's true they're not very consistent. He is going to do a bronch in the next few weeks just to be sure. He wants to ease my mind and his. In the meantime I have to get in gear and hit the treadmill and start weightlifting again! No more excuses about the house, or work, or anything! Sandy is a fabulous transplant coordinator and she gave me the biggest lecture yesterday, she said, "What is all of the other stuff worth if you're not here to enjoy it?". She is so right.
In other news, the Lung Transplant Foundation for which I am heavily involved with as secretary and website committee chair has finally launched it's website! I, along with the other website team members, Jana, Amber, Aaron, Kathryn, and Kim have been working so hard to make this website a reality. My doctor, Scott Palmer, MD, and Jeff Goldstein founded this organization to help promote awareness and raise funds for lung transplant related research. Lung transplantation is a like the "red-headed stepchild" of research Dr. Palmer says. There is just not a lot of money going towards finding ways to help stop chronic rejection of transplanted lungs. The five year survival rate is very low compared to other solid organ transplants. That needs to be addressed, come on it's 2010! We need more research! If you can please check out, www.lungtransplantfoundation.org and spread the word.
Lastly, I want to say above everything else I am a CF survivor. Dealing with Cystic Fibrosis is a full-time job and the pay is lousy. :) I have met so many people who are in the same boat as I am and they are all the strongest and most amazing people I will ever know. They give me courage and I'm thankful for the support we can all share with one another. Sometimes you feel all alone in this world of chronic illness but then you remember you are definitely NOT alone!
Look for a post soon on the Durham Great Strides walk set for April 17, 2010!
Good night all!
No comments:
Post a Comment