It's been a long time since my fingers have typed out a blog post. I don't know if anyone will even read this. How do folks happen to find blogs these days with Instagram and facebook and who know what else taking over? An old blog friend commented on my Instagram recently and recalled the old blog days when my dining room was a sewing room, and I had a burning passion for sewing and creating. I miss those days.
So, what have I been up to? Why so long away from my creative space? Well, initially I was occupied by a new grandchild. That new baby just turned 8. For a long time she was my excuse. "Oh, I haven't really had time to sew since Bayleigh was born." "I'd rather spend time with my granddaughter than sew"... Then she got older and spent less time at Nana's house because she had to go to school. What then was my excuse? I was dying. I didn't know it, but I was slowly dying. Doing less and less month by month, day by day. My lungs were losing there ability to provide the oxygen my body needed to fuel my daily activities. I was to the point I spent hours on the couch. Inside I felt like I was just lazy or unmotivated. I would do a little laundry, maybe make the bed and my energy would be spent. I was in denial about what was really happening. My weight hovered around 90 pounds because my body was working so hard to just stay alive.
I had known for years that one day I would need a double lung transplant, but wanted that day to be many years from now. Deep inside I hoped and prayed for some miracle drug or treatment that would heal my lungs and never need a transplant. You see, I had always been told scary stories about life after transplant. For one, it was likely short. Around 10 years if you're lucky. A life of taking lots of medicines to stay alive. Medicines with toxic side effects. It isn't a pretty picture they paint for you, those transplant docs.
In September of 2015, during what I thought was a routine check up at the transplant clinic at Duke, the doctor looked at me and dropped a bomb that left me a little dizzy and shell shocked. I really felt like he punched me in the stomach. He said "You are in your window, you need to begin making arrangements to relocate to Durham to be actively listed". Why was this a shock? I was at the transplant clinic, after all. I've been followed by transplant doctors for 15 years. First at UNC now at Duke, and always told I was stable and not in my "window". That's what they call it when they think you are sick enough for transplant but not too sick to endure the grueling surgery and recovery. So, for 15 years I've been keeping on, shocking doctors with how well I was getting along with such poor lung function. The words I didn't want to hear were exactly what I was hearing.
Things happened pretty fast after that. In fact they seemed to fall right into place. I never would have imagined we could afford to establish a second residence in another city, but what a blessing, our insurance has a travel and lodging benefit for transplant patients. We found a wonderful apartment minutes from the hospital and the rehab facility. The ground floor apartment had just been vacated. There is usually a wait list! We moved in October 4th and began what I call my transplant journey.
I'm going to stop there and follow up with part 2 tomorrow. There will likely be a part 3 and 4 too. It's a long story and who has time for that these days?
I'm so excited to be getting reacquainted with my dusty old blog but most of all my blog friends! I've missed you.