Testing Day

Here are the details of my big testing day at Duke...

It all began at 9am with a breathing test. The test lasted an hour! I was in a little room with a woman, while Steve waiting in the waiting room with his iPhone. She would tell me a sequence of breaths that I needed to do into a tube on a machine...and then when it was time to do it, she would coach me and cheer me along, while we watched the results on the computer monitor in front of us. It was actually quite challenging!! I had to do all sorts of crazy deep breaths and then breathing out for much longer than I was comfortable doing, etc. Apparently some of my results were weak on this test, but that would be logical based on my low hemoglobin.

Then we moved on to an appointment with my doctor's nurse. But while we waited in a new waiting room, I was paged to the blood test area. Huh?? I explained to the nurse that we were just supposed to be meeting with Sarah, and I was not supposed to have a blood test. My biggest concern was that my port had yet to be used, and I was nervous. AND multiple friends had told me to request a prescription of numbing cream before having the port accessed. So that was one of the questions on my list for Sarah that day. I was glad I stood up for myself, as we headed back to the waiting room. But then Sarah came out to explain why I did need the blood test afterall (they hadn't tested my hemoglobin during Wednesday's blood test). But after I explained about the cream, she agreed with that route. Then Steve headed to the pharmacy with a prescription, which apparently they had to get from the pediatrics area. ;) So this took a long time. Finally....he was back, and Sarah applied the medicine. Then we had to wait one hour before the port could be accessed....but we were just a little over an hour away from our next appointment, which was way over at the hospital! So things started running behind. We had our appointment with Sarah, then I did have the blood test. The guy who did it was GREAT!! :) And I was able to lie down. There is some soreness still, so it was not pain-free. But I just lay there and occasionally peeked up at Steve's face, as I held his hand. Then the nurse left the port "accessed", so I wouldn't have anymore sticks that day!

Next....we were off to the hospital via an outdoor covered walkway. Fortunately, we had a wheel chair! It was a very long walk. I was doing VERY well with walking yesterday! But I couldn't have done all of that. And on our way over.... we ran into our friend Kathy in the walkway, who works at Duke!! :) How fun!!

When we talked to Sarah, we asked about my left shoulder and if we should pursue seeing an orthopedist at this point. She said that they have a great one there, and they should order some xrays. Soooo....my appointments were delayed even further, because we began the afternoon with xrays instead of the planned appointments. They wanted me to do all sorts of crazy things with my arm, which I definitely couldn't do! She tried moving my arm herself, and I protested! I was not going to let her hurt me, so I stood up for myself and asked if there was any other way we could do this. And there was... It was better, but still not great. So afterwards, I had a lot of arm pain due to all the manipulation. I'm anxious to hear the results of all this.

Next we got back on track (an hour late) with getting ready for my scans. They had me get into a hospital gown, which I had to wear walking down hallways and such. ugh! Fortunately, they had me wear a 2nd one backwards. ;) A nurse flushed out my port. yuck. But it wasn't a big deal, and I didn't watch a thing. Then someone took me in another room for my bone scan injection of radioactive stuff that had to sit in me for 2 hours before the bone scan. Well, she said it had to be a shot in my arm. A WHAT???? Now why did I get this crazy port if I still have to have shots in my arm???!!! I made a big deal out of this, and her responses were just weird. She was one of the only non-friendly people I dealt with all day. In fact, I mainly dealt with WONDERFUL, caring people at Duke!!! They were really great. :) Anyway... it took a long time to figure out the story, but finally I understood.... Usually, you already have an IV going for the CT scan, and the bone scan people just use the same IV for their injection. BUT I didn't have an IV, because the CT people were going to use my port. And the bone scan people can't use the port, because the radioactive stuff will stick to the plastic, and the bone scan won't turn out. ugh. So that meant I had to get a shot in my arm instead. I wasn't happy. :(

Then I was off to the CT scan. This took quite awhile, and actually, the 2 guys who did it weren't all that great either. But the nurse who came in to do the IV was awesome and really helped me. The CT guys would just leave me with my head and shoulders in the donut of the machine during breaks between scans - and I felt claustrophobic! But the nurse helped pull the table out so I didn't have to be stuck in there. whew! They also wanted both of my arms above my head, but I couldn't do my left arm - so they had me put it down by my side, and they strapped it inside something they were strapping across my mid-section. So basically, I had my left arm tied down by my side! I didn't like that too much, but fortunately, it wasn't too tight. Then the nurse did an injection through my port halfway through the scans, which made my body all warm and weird. And finally it was all done... whew! I had this done at WakeMed in early September too (although a little differently). And now I will have it done every 3 months.

THEN... it was 3pm, and we finally got a break!!! :) :) So we headed to the hospital cafeteria for lunch. At that point, I was tired and freezing and just wanted to go home. I had been doing great all day with a great attitude, but I was worn out. After lunch, I slept on Steve's shoulder in a waiting room for 30 minutes, and that helped a lot.

So at 4pm... I finally had my bone scan. The woman in charge here was a recent grad, and she was very funny. She was so sociable and just chatted away with me about things like baking cookies with a friend too late last night, etc. ;) I'm going to be doing this scan every 3 months as well. The machine started with my head, then slowly the table slid through the machine, with my head coming out first. The test took about 20 minutes. She had to tie my arms down my my sides with straps!!! ACCCKK!!! I didn't like that!! And she put a rubber band around my feet to keep them together. Amazingly, I was able to deal with all this! I know that God was with me through all these tests, and all your prayers have helped so much!!! She said that I needed to hold still and keep my eyes shut as it started on my head. She said that it would be a mistake to open my eyes, because the machine would be so close to my face that it would freak me out. So she told me that she'd tell me when my head was out of the machine and I could finally open my eyes. I did cheat though...I couldn't take it! I peeked out just a tiny bit a couple times, and it was ok. I just needed a sense of my bearings. I did alright though. :) She also played music for me, which helped. Then finally my head came out, and she said I could open my eyes. So she chatted for the rest of the test. And once my arms were out, she undid the straps. Yay!! Afterwards, she went to show the scans to someone and came back to say we needed one more. This was just of the sides and didn't take as long. Then I was done right about at 5pm!!! :)

Unfortunately, I had an echocardiogram scheduled for 4pm, but we missed that. And when someone called over for us, no one answered -- so we think they had gone home for the day at 5pm. So I guess we'll have to call on Monday to get that rescheduled. I go back next Friday to meet with the doctor, and hopefully I can just do that test on the same day.