Well, after praying and thinking about it for months I've finally come to a decision. I will be going through with getting a transplant. Here's the when, where, why, and how:
When: My lung function has been around the mid-30% (when I'm at my best) range for awhile. I won't get listed until I'm in the mid-20% range. They figure that by the time you're there you'll need the transplant in 2 years or less. So, hopefully I won't get listed for awhile. Since CF is so unpredictable, they want to have things in place in case things change for the worst quickly. I have an appointment on the 14th to do some of the testing, but since I'm already in the hospital, Dr. Hornick said we'd try to get this set of tests done while I'm here. I'll be having a chest CT, PFT's, a 6-minute walk test, and I'll talk to the surgeon.
Where: Here at UIHC. They've had a program since the 1990's, but didn't have a surgeon for several years. They got one again a little over a year ago. It's actually what started me thinking about it all again. I love the people here, I love the doctors, and I love the town. Sometimes being comfortable and trusting the people you're working with is more important than going to the absolute best place in the country. Though, Iowa does have a great track record. Also, since they're relatively new, the list is relatively short so my wait should be pretty short once I'm listed.
Why: Like I said, I've been thinking about it for awhile...again. :-P What finally got me was when I heard one of the girls I've known here for a long time, Jamie, got her transplant in December. In January my PT aid, Amanda, was telling me about how Jamie's last few days before the transplant went and how she was doing since. I started crying. Granted, I cry a lot, but still, I didn't know why I was crying. A couple of years ago when I was seeing a counselor (seeing one now too, but a different one) she told me that whenever I cry there's an emotion behind it and I need to figure out what that emotion is. So, I thought about it and figured out I was crying because I really wanted that chance. I wanted the chance to breathe a full breath and even if I only had that for a minute, I wanted the chance. I realized how much I really wanted a transplant. So after talking to Jake, I decided to pursue it. I told Dr. Hornick I was re-thinking my decision and he got me in contact with the transplant team. It's all gone pretty fast. I've talked to the transplant team's social worker and both lung transplant coordinators. After a lot of prayer and thinking I was almost 100% sure I wanted to do it. For the past couple of months I've been devouring books. I don't know why I suddenly want to read all the time, but I do. I've totally fallen in love with Karen Kingsbury's books. She's a christian fiction author and her books really make me think about a lot of things. So, I was reading one of her books and in this one in particular she was talking a lot about choosing life in all circumstances. When I was done I read the author's notes and she said her dad had been diagnosed with cancer and though he was told it may not do anything for him he decided to go ahead with really aggressive treatment. She said that her dad had always taught them to choose life. I looked up a verse she referenced, and although it was not quite "you need to get a transplant", it really confirmed my decision. I know that in context it means choosing God and ultimately, Jesus Christ, but still...I think it fits. The verse was Deuteronomy 30:19 - "Today I have given you the choice between life and death, between blessings and curses. Now I call on heaven and earth to witness the choice you make. Oh, that you would choose life, so that you and your descendants might live!". So, although it may not last more than a minute or even less, I want to choose the chance at life. And if that's all I get I still get to live - just in a different place. Either way, I win. :)
How: It's a complicated process as you can imagine. I'm going to try to chronicle my lung transplant journey on this blog, so you can all see how it happens with me. Things are overwhelming right now. I have such a mix of emotions...from anxiety to excitement. Part of the process is to meet with a psychiatrist so that's gotta tell you that this is a stressful and emotional process.
I would love for you to continue to pray for me, my husband and family as we go through this. Some specific prayer requests:
*Please pray that I will put my faith in God alone. During my emotional ups and downs I want to draw on His Word for strength. I've tried to make a point of reading something from the Bible when I find myself starting to stress out, become depressed, or worry. I want this to be my first reaction rather than my last resort.
*Pray that I will keep an eternal perspective in mind. When I worry what people will think or how they will view me, I lose sight of my purpose - to bring glory to God. When I concern myself only with how God views me and what I am "storing up in heaven" I am much more likely to be bold in my faith.
*Please pray that my family will be united in this. No family is immune to problems and there are bound to be problems that come up in this stressful time. Pray that we will all be reminded that we need each others support, need to love each other, and can use this time to renew and rebuild relationships.
*It is very easy for me to do everything to distract me from my emotions rather than actually dealing with them. Please pray that I will talk about the emotions, deal with them, and most importantly take them to God in prayer. He gives peace in a very unpeaceful world.
*Please pray that God will give me courage. In my weakness, His strength is made perfect and I pray that His strength and glory will show through me.