Seems like time for an update, right? Well, we're still in a holding pattern, still waiting. There was a flurry of excitement over Memorial Day weekend. Earlier that week, while I was in rehab, I noticed that my oxygen was dropping down into the 70s (should be low 90s at least) while I was walking. It went back up where it should be when I switched to the "rebreather" mask, which has a small bag attached, and somehow recirculates the air, making it more accessible. But you have to use at least 10 liters of oxygen with it to be sure that you're not re-breathing your own CO2. I assumed that the drop happened because my fibrosis was getting worse. I had known it would, but I still wasn't prepared.
Sunday found me checking into Moses Cone Hospital in Greensboro via the Emergency Room, because the oxygen system we have at home wasn't sufficient to meet my increased needs. One night, a couple tests, a new prescription and a duplicate concentrator set up at home, and I'm back in business.
Still waiting, still adapting. But I'm also complaining quite a bit. Wearing a plastic mask over your nose and mouth with a sandwich-sized plastic bag attached under your chin--and then all attached to the top of your head by a green elastic strap--is a hard look to pull off. I'm trying, but I need a little more work. I'm adding pictorial evidence to my gallery here strictly for your entertainment. Please laugh. It's the only thing that makes me feel better.
And again, I thank you for prayers said, and ask for your continued prayers. I've no doubt we'll get there. This is just a detour. Thank you for staying with me!
May 24, 2017
Waiting. It's hard on your nerves. First we were waiting to hear if I was going to be a viable candidate for Duke's Lung Transplant Program. A week of rigorous medical testing in January, and I received a letter telling me I had made the grade. Yay, Kate. It felt good to be accepted.
Next came the wait to actually be placed on UNOS's list. That kept me busy for a while. I desperately wanted to be on that list, because until I was, my condition would worsen, but there could be no hope for relief. But first there were a lot of loose ends that we needed to tie together. More medical appointments to be made, caregiver classes to attend, fitness goals to be met and maintained and, perhaps most importantly, fundraising. We needed to raise at least $10,000 prior to listing. That goal was met fairly early in the process, thanks to you, my wonderful, generous friends. With your support and your prayers, I was finally listed. I felt like I had won the coveted Mirror Ball Trophy.
What next? More waiting. Now I am waiting for a phone call. There are still loose ends, but it has gotten to the point that if they called me now, this minute, and said "We think we have a lung for you," I would drop everything and run, knowing the details would somehow work themselves out. I have a wonderful bag, but there's nothing in it yet. I won't need anything--just a ride to the hospital. And my caregivers. And prayers--lots of those!
Waiting is getting harder. Breathing is getting harder, and my oxygen needs are increasing. Doing everything is getting harder, including sleeping through the night. I constantly remind myself to trust God, to envision the positive outcome I desire, and to stay focused on that. I try, but sometimes I fail. That's gotten harder, too.
I have no idea how long I will wait. I just know I have to do it. And I know that prayers are helping, so please continue to mention me in yours? Thank for you that, and for all that you have already done.
May 14, 2017
Happy Mother's Day!
It's been an eventful week and my emotions have been all over the board, but as I sit down to write this, I feel happy and full.
If you read my husband's update, you know...
May 09, 2017
Kate's husband, Greg here this time. After seven + years knowing she was working faithfully towards today, in the 11a hour, May 9, 2017, Kate was "listed" for lung transplant at Duke University...
May 05, 2017
I keep reminding myself that something could still come up--something they just haven't thought of yet. I'm almost afraid to hope. Since January, when I made it through an entire week of...
Apr 28, 2017
This is not really the kind of update where I give you new information that you don't already know. It's just me sitting here with a grateful heart on a Friday afternoon, feeling like I want to...
Apr 22, 2017
Hi. Still some questions, but we're moving in the right direction! Necessary appointments have been made, a plan for getting everyone to the appropriate classes is in the works and, thanks to your...
Apr 14, 2017
Hi, it's me, Kate. Wow. I am overwhelmed by the way this is going. So many people are helping us on this journey with prayers and positive thoughts, rides back and forth to Durham and, of course,...