Monday, November 2, 2009

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.


  1. Your posting was so touching to me! It so really was. I am a 32 year old married woman with 3 children, all girls (Poor Dad!) :) Out of my 3 girls, I have 2 that have Cystic Fibrosis, my girls are now 12 and 10 and such great girls... My youngest has been really sick lately, I would say about the last 2 years. She was diagnosed with CF type Diabetes when she was was 7. We just left the hospital last Friday with the both of the girls getting a 2-week tune up and found out that my 12 year old has also developed CFTD. With all of that being said; the reason that I wanted to touch bases with you is that I believe that "God is everything and that he can do anything he wishes" "He can perform miracles and he does" I have seen him to do it first hand with my youngest daughter. When she was 8 her doctor could not figure out what was going on and thought we were coming to the end of life on earth but miracuously he did another x-ray prior to surgery and she was completly cleared up. He had no explanation but I do. "POWER OF PRAYER" it definetly works. Please keep on praying! You will come through this and you will be so healthy and happy! Just keep praying as I will as well. I will now include you and your family, your donor and their family also in my prayers. I of course always pray for all CF kids, Adults and their families. I also pray for all of the doctors and scientists to have knowledge and strenth to help. Take care! If you ever would like to chat you can e-mail me at My family resides in Anchorage Alaska.

  2. You are in the palm of God's hand. I love your perseverance, and your faith during these very trying circumstances speaks volumes about a God who is so great. Thank you for sharing this part of your life with us. You are an inspiration! Keep bringing glory to God! I am praying for God's will to manifest in your life! God bless you and your husband.

  3. Thank you for being so vulnerable and sharing with us, Becky, especially your feelings about the aftermath of the transplant. Even though it will obviously be a good change, every area of your life will be dramatically affected . . . and that can be scarey. I will be praying for you that "the God of all comfort" will show Himself very personally to be Immanuel in your life. Love, Mary Ellen

  4. Becky...take courage. Brent was transplanted here in chicago last may 2009. So far he has done great. there are still bumps in the road but it's SUCH a relief to be able for him to breath so much easier and not have to FIGHT for every breath of life. We praise our God everyday for this gift of life! You guys can get through this...Brent was hospitalized out in Iowa City at which time they put him on the transplant list here in chicago...they have an awesome team out are in great hands! We are praying for you as you take these steps to a new life not only personally, in your marriage but in life all together! Continue to Dream..the best is yet to come!! All our love-brent & Trudy blunier

  5. We are super close in Stanford so if you ever need to talk or you need someone to talk to plese feel free to e-mail me at!