THE WAITING
Okay, waiting is not the most fun part of life. I have started some projects to help pass the time. I work on my family trees, have made buttons, magnets, ribbons, and tote bags to sell for fundraising to help pay for medications and other costs my insurance doesn’t cover both pre and post transplant, voluntarily keep the website for the UWMC lung transplant support group; I go to Pulmonary Rehab twice a week to help strengthen my body for transplant.
I have recently had the opportunity to try out oxygen equipment that was new on the market. I believed once all the “kinks” were worked out, it will be a great help to those on necessary supplemental oxygen; it could free us from having to rely so heavily on the home care companies, allowing us much more freedom and portability. However, this was not to be. I had many problems with the equipment and apparently I wasn’t the only one. The equipment was recalled and word is they will NOT be re-designing it. What a disappointment!
My only choice was now to go back to the tanks of compressed oxygen, making life a little more difficult for travel (even in-area) because I require fairly high levels of oxygen for supplement – 6 Liters now. I have to make sure I carry enough oxygen tanks with me to last until I come home (and extra in case I run late). Thanks to the help of the wonderful people at the oxygen supply company, I am well taken care of. The fear of being away from home and running out of oxygen is nearly non-existent.
Christmas came and went. I was still in Seattle waiting for that phone call. Now another summer has come and gone and I am still waiting. It seems, like in every other aspect of my medical history, I am again "not the norm".
I have tried (mostly successfully) to keep busy and my spirits high. In June of this year (2009) Al and I celebrated our 30th wedding anniversary. I remember wondering if I would see the 25th! Our plans were to take a cruise of some kind to celebrate. But, I don't know of any fantastic cruises thru the Puget Sound. So, we settled for a small party with some family and a few friends. My sister flew from California to Oregon, and then drove my mom to Seattle for the celebration. It was fabulous to have them here. Thanks to all of those who pitched in to make it a wonderful event.
At times I find it difficult to face another day. I miss my home and my possessions, my husband and my son. I have made some really wonderful friends here and it will be difficult to leave them when the time comes. My respiratory therapist and her co-workers have become a 2nd family to me. Because I am a lung transplant candidate, I continue the rehab program to keep my body in the best condition it can be in until surgery. Through the rehab classes and support groups, I have met several other transplant candidates. We all wait together for that much anticipated call to the University for our surgery.
I have now been on the wait list for approximately 15 months. Apparently it is difficult to match me to all of the different criteria that must be matched for a transplant to have the best outcome. I continue to wait and try to keep uppermost in my mind that others have waited longer than I have. My health is not declining rapidly so I have time.