On THE List

On October 15, 2009 I was officially put on the University of Iowa Hospitals and Clinic's double lung transplant list. As of today I have a lung allocation score of 32.77. (You can Google lung allocation score to learn more about what all that entails.) For my blood type group (type A) I have the highest score at this transplant center. So, essentially I'm at the top of the list!

Being on the list has brought on a myriad of emotions. Most of the time I'm excited at all the possibilities. However, I'm also going through everything from depression to nervousness to fear. Knowing the call can come at any moment is kind of like having your senses on high alert all the time. It's stressful and anxiety inducing. The times I'm not thinking about it are far and few between and inevitably I suddenly worry about not being worried.

I'm also in the hospital right now and somehow being here has intensified all the anxious and sad feelings I was feeling at home. Honestly, I don't know how people do this for one and two years. I know that my wait is going to be relatively short and continually experience these things. What do those people do who wait for such a long time?

Something Jake and I have been talking about lately is all the changes that will occur in our relationship. Jake has always been my caretaker, especially these last couple of years. Besides the stress of surgery and recovery, we are going to be facing a significant shift in roles. Suddenly the things I haven't been able to do I'll be able to do. The things I depended so much on Jake for will be greatly decreased. This is bound to change things between us which is both exciting and scary at the same time. I see it almost like getting married again.

Before we got married we talked a lot about who would do what and what we expected out of each other. Now, we're having those same conversations. The difference is, we're not completely sure what to expect. We don't know how a "normal" couple does things. It's all going to take a lot of adjustment. Thankfully, we've been seeing a great counselor who's been helping us to see where things will change and will be there for us when we feel lost in our new relationship roles.

It's not just our relationship either. Almost every relationship I have will change in some fashion. Most notably with my parents. For nearly 28 years my mom and dad have worried and cared for and kept a close eye on me. Though I still will never be perfectly healthy after transplant everyone around me will have less to worry about. It seems like this would be a huge relief and welcome respite, but again, after 28 years of certain roles it will be a huge adjustment.

It will be a big adjustment for me too. Though I've always been very independent and hated being in any kind of spotlight, I'm sure to some degree it's something I've become accustomed to. I just pray I will handle this with grace the way God wants me to. Certainly going through counseling this last year+ has helped me separate myself from my disease.

Until a few months ago I wouldn't have thought I had that problem. However, with my counselor's help I realized I really thought CF was a huge part of who I was. Now though I realize I am just me and I happen to have the challenge of CF. I've even made a concerted effort to separate myself from the disease. Where I used to say I was a CFer, now I say I'm a person/patient with CF. I know it's a little thing, but I figure if I start with little things it will eventually make a big difference.

Anyway, I got off on a little tangent there. I continue to pray and ask that you pray that this will all happen in God's perfect timing and that He'll give me His peace that surpasses all understanding. I also ask that you will join me in praying for the donor and his or her family. Please pray that they are believers in Christ Jesus and that God is right now preparing them for what will come. Please pray that they are right now having special moments with each other and making memories that will carry them through their grief.

What is kind of neat is that each time I have an anxious feeling it drives me to pray. I pray for myself and my family, but I pray more for the donor and their family. I am already feeling a special connection with them and pray that one day we will meet each other in heaven.