About two weeks ago, Julie and I met with the transplant team up at the University of Utah hospital. After some final paper work and some deliberation on mitigating their risk, (worst case scenarios), we went home with the anticipation of being officially listed. They were very clear with us to make sure we always carry our cell phones as these are the primary contact numbers they would be calling. The order on the list is determined by your lung allocation number (LAN). That night both Julie and I missed the call from the U transplant team. When we called them right back they had to reiterate how important it was for us to have our phones on us at all times. They told her that her score was 41 (out of 100) and that it is relatively high. She apparently jumped a few on the list and they told her we should have some offers soon. There are only 7-8 currently in our center which services the whole intermountain region for lung transplants.
So its official. Julie has signed away her destiny to the transplant team. We feel good. We are excited and nervous. It is still surreal and probably will be until we get at least the first call. Apparently, lung transplants are known to have some false starts. In some instances, you may get the call, go up to the hospital, get prepped, and basically get ready to go under the knife and the surgery may get called off. Sometimes they don't know everything about the organ until it is out. All of this information about transplant itself would have really stressed Julie out at one point. However, after having some rapid declination in her health and having very sensitive lung function over the past year, I think the uncertainty is outweighed by the huge possibility. There is always worry, but the possible outcome may be so much greater.
This is the first real possibility of a 'healthy' life for Julie, and for that I am grateful. I look forward to seeing her progress through recovery and watching her live life to the fullest much like her father. We are carrying on in life as if things are normal. We are battling the disease with treatments, I'm working for Fisher and Paykel Healthcare, and we are slowly finishing our basement. It is nice to work on choosing finishes with Julie. It gives us a sense of normalcy and hope for the future. She enjoys choosing things for our house to make it look nice and feel welcoming. It is something to take her mind off the inevitable D-day.
I fully expect to come out of this experience as a couple. The Lord has been by our sides the whole way. Julie has such a clear understanding of the world, values, and people. She really has perspective on what is important. I am grateful for that. I think this experience inevitably forces her to think about her basic beliefs and values and motivates her to practice them. For as unstable of an experience this is, she is constant. She never deviates from what she believes.
Last Tuesday Feb. 1, she was admitted. From about the Friday before and on, she would get winded. She looks good, her color is normal, and her weight is up to 108. She just gets tired easily. One day two weeks ago she was lethargic before I left for work in the morning. I asked her if she wanted a blessing and she accepted. I gave her a blessing that she would receive strength and that her lungs would relax so she could take deeper breaths. To my and her surprise, she was able to get a lot out that day. She said she was able to relax and do PEP therapy, CPT, and Hypertonic Saline. The priesthood does something to clear your mind. I really believe that the Lord helps us in a tangible way through the tools that we have, and also in intangible ways. It is so difficult to get her to relax when she is having a hard time breathing. She gets anxious, and worries about her life; can you blame her? With the priesthood, I can try to help in a way that CPT or other therapies do not.