To start with Day 1 go here.
I woke up Wednesday and turned to my husband and said, "I am over it. It was fun, but now I want to go home." I had a lot of adrenalin the first day and some of that carried into Tuesday, but by Wednesday it had warn off and I was ready to go home. But we were half way done and had no choice, but to continue on! So I put on my big girl panties and went to my first test.
Echocardiogram with Bubble Study: I checked into the echo lab around 8:45. I went back into the medical room where they had me change into a gown with the opening in the front (opposite of the norm). The nurse came to start an IV. I asked if she knew how to access ports and she said she was more than happy to use my port instead of a peripheral line. I was so happy! My port was coming in so handy! She left to get port supplies while the tech (Dr? Sorry, I had so many tests I wasn't sure who was a Dr and who was a tech) started the sonogram. It was very reminiscent of when I was pregnant, but instead of looking at a beautiful baby growing inside of me they were looking at my beautiful heart. Again, I was watching the screen, but it was a lot less fun than looking at baby feet and baby hands. All the pictures looked the same so I was only half paying attention. The tech was so warm and kind though which seemed to be a trend at Stanford!
When the nurse came back she accessed my port and we started the bubble portion of the test. They push saline with bubbles in through your IV and watch how they pass through the heart. Apparently, they are looking to see if any bubbles find their way to the left side of your heart. If they do, it means you have a small hole in your heart which apparently is somewhat common. When the nurse pushed the bubble saline into my port it traveled through so quickly they actually missed it! The combination of using a port which is much closer to the heart than a peripheral in the arm and my very fast heart beat made the bubbles travel faster than they anticipated. They repeated the test and then did it one more time while I clenched my stomach (like I was going to the bathroom) which apparently puts more pressure on the right side of your heart. I am 99% sure I failed this test, meaning I have a small hole in my heart. Nobody ever told me what this actually means as far as transplant or life in general. Hopefully, it isn't a huge deal since nobody mentioned it, but I will be asking my CF doctor about it next clinic.
During the test the nurse in the room started asking about my schedule for the day. When I mentioned I had blood work she told me that I should get the labs taken from my port. I wasn't sure the regular outpatient lab would do that so she started making calls to see if someone could take blood from my port. Finally, she told me she would walk me down to the lab, wait with me and then ask the phlebotomist if she could do the draw instead. You guys, that was so insanely nice and was the overall feel at Stanford! Everyone went so above and beyond what was expected of them and they just all genuinely wanted to make my life as easy as possible. So we went to the lab together and she drew 8(?) more vials of blood and then took out my port needle.
Lung Transplant Clinic:
After my labs were done we went over to transplant clinic. I was surprised to find other people with CF (pre-transplant) in the waiting area. In recent years my current clinic usually brings us back pretty quickly (where we still wait forever) to avoid having too many CF patients in the waiting room at the same time. Just like my current clinic we waited forever to be seen. Also, like my current clinic we saw a team of people. I had to give an overview of my medical history and any family history of diseases. I was glad my dad was there because outside of my immediate family I wasn't sure on family history as far as health issues. The social worker stopped in and said I was a good candidate from his end. I was able to skip the nutritionist because my weight is fine which saved us a bit of time.
I was told pretty quickly that I was not ready for transplant. My 6 minute walk was good, my lung function numbers are not good, but not at transplant level yet and I am not on oxygen. We went in anticipating this result, but I felt so much relief knowing that I could put transplant off a little bit longer. It does scare me a little bit though because I was told without hesitation that it is not time. I think about how low my energy is and how often I feel sick and I can't help, but feel a sense of dread for what things must be like when it is time. It is one of those times that it is better to just not think about the future and try to stay in the moment because no good will come from thinking about your inevitable decline.
Clinic was the last appointment of the day. I was hoping to feel relieved that I was almost done with my week at Stanford, but I was absolutely dreading my right heart catherization and finishing day 3 meant that I was one day closer to the heart cath.
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