Pin Cushion

Tuesday was another full day in Baltimore. I thought it was going to be a nice, easy bone density scan, lung function test, and a quick visit with Dr. Boyle…but that isn’t what Cathy (one of the lung transplant coordinators) had in mind. She called me on Monday afternoon and told me that she arranged for me to get some more evaluation stuff done in between my appointments. So Mom picked me up and we started the trip for 4^th time this month.

We got there early and I had the bone density scan. I’ve had several before and all you have to do is lay on a table with this scanning thing above you. They told me to wear comfy clothes for the scan, so at least I got to wear sweat pants all day! The scan lasted about 5 minutes and I was done before my appointment time.

Then we headed over to get my blood work done. The phlebotomist had everything all laid out on the counter and she was getting ready to stick me when I said “Aren’t you going to alcohol my arm first?!” She had forgotten to clean my arm before sticking a needle in it! She apologized and couldn’t believe she forgot. But she stuck me and it worked and so I was happy!

As we were finishing up lunch in the cafeteria, we got a call from Dr. Boyle. He is working with a university in SC studying CF genetics. He had asked me to be part of this study before, then they said I wasn’t eligible, then on Tuesday they realized I was… so he asked if I would be able to participate before my lung function test. That took a while but it was fine.

Then I did my Pulmonary Lung Function Test (PFTs). This is a breathing test that, in combination with how I’m feeling, tells us how my lungs are doing. A healthy person’s PFTs would be from 95-100%. When I was in the hospital in August, my PFTs were 25%. When I went back last week they were at 35% and this week they were at 39%! Dr. Boyle said that this is perfect for transplant. He said he wants me to be as strong as possible so that my recovery will be easier. Then he looked at me with a casual smile on his face and said “So, do you want to get listed in September?” I probably had a deer-in-the-headlights look on my face. I said, “I don’t think I’m mentally prepared for that. I think October sounds good to me.” He said that mental preparation is a huge factor and he felt good about waiting a few more weeks to list me.

I know that waiting 3 more weeks doesn’t sound like that big of a deal. But it feels like it. When I get listed, my phone will never be off and I will always have to be ready to drop what I’m doing and go down to Hopkins. The thing about lung transplants is that lungs only last 3-4 hours outside of the body. That means that when there is a possibility of new lungs, they fly their team out to them to check them  and see if they could be a match. Meanwhile, they call me and I go down and get prepped for surgery. Hopefully they will be a good match and they can fly them back and go on with the transplant. If they aren’t right, they tell me to go home. Then we will wait more. It seems like once I get listed there won’t really be any down time…there will always be the possibility of getting the call.

By the end of the day I had done a bone density scan, regular blood work, a CF study, PFTs, a hepatitis shot, a flu shot, and special blood work that they draw from the artery where you can feel your pulse in your wrist (yeah, that one hurt and she didn’t get it on the first try.) So, after my 5 needles in one day, my sister gave me a new nickname…Pin Cushion : )

- Rachel