I Am Listed!

The last 24 hours has been a whirlwind of emotions and good news. As I mentioned in my last post, I had another unexpected test last week. The results of which could have bounced me from the program all together. Even though it was unlikely, and admittedly a worst case scenario, it was difficult not to feel the possibility it could happen and to consider what that would mean for me..

I had been told I would get the test results on Friday. When I didn’t, and was told it would instead be on Monday, it made for a very long weekend. The drumbeat of doubt was getting louder as much as I was trying to put a damper on it. By Monday morning I was pretty tense. As the day lingered on with no call, the tension was blooming into full blown anxiety.

Finally, about 4pm I got the call and the news that despite a few abnormalities in my blood, there was certainly no reason I couldn’t go through with the transplant. Whew! Tears of elation flowed!

This morning, I knew the transplant committee would meet again to discuss who would get listed. I felt I had every reason to be hopeful. I had passed all of the medical tests, completed my 24 pre-hab workout sessions and attended all of the education classes. Yet, I was doing my best not to get ahead of myself again.

At 1pm today, I got the call and the news, “You have been listed with a lung score of 47.8.” Can you say Happy Dance!

How I felt getting the news!

So what being “listed” means is Duke is actively seeking donor lungs across the country. Lungs that match my blood type, size and are compatible for me could be sourced at any time. What my lung score reflects is my level of need as compared to other people waiting for lungs. My score means I need donor lungs more urgently than approximately 75% of the others awaiting transplants. Thats good for me, in that my waiting time will likely not be more than a week or two.

It could be tonight, tomorrow, next week or the week after. You never can know exactly when. What I do know is I have to have my cell phone on, and by my side 24/7 here on out. I also must answer every call regardless of the time. Once I am notified they have found donor lungs for me, I have two hours to be at the hospital ready to go! Unfortunately, due to Covid-19, Susie will have to drop me off and will not even be allowed in the hospital. That feels lonely already, but it is what is. There are a lot of FaceTime and Zoom calls in my future.

Once at the hospital, I will likely wait for hours, as many eight, while the lungs are harvested, flown to Duke, and inspected by the surgeons. Only when and if they sign off, will I learn if the transplant “a go” or not. Approximately 20-30% of the time it turns into a “dry run” because the surgeons reject the lungs. It’s stressful and a drag when that happens but I appreciate the quality control!

Obviously there will be period of time post surgery when I’m not able to post updates to this blog. During that time my daughter Emma will be standing in for me and posting updates on my progress. She’s an excellent writer and often amusing one so keep checking back for news on this crazy adventure.

I know my life is about to change forever. I just hope and pray the positive changes out weigh the negatives and am confident they will be.. I know attitude is a huge part of the battle and I also I know there is also a bit of luck involved this process as well. Wish me luck!

Thanks for your continued support.. I appreciate it more than you know.