The last post, I left off with our relocation to Durham, NC. All along this road to transplant, there have been so many small miracles and blessings. The first one came when I had to change transplant centers from UNC to Duke for insurance reasons. I have 100% faith in UNC and loved my doctors there, but when it comes to lung transplant, Duke is the leader. They are a high volume center and their wait time is much shorter than other centers.
When I first met with Duke, they scared me more than a little with their rules and regulations. They are strict, but that's what makes them so successful. In order to be accepted in their program you must agree to relocate to Durham for up to possibly a year (maybe even 2), you must attend their pretransplant pulmonary rehab and you must have 2 people willing to sign a contract to act as caregivers (a primary and secondary). Those are just their major requirements and this is to even be considered, still not a guarantee you will be listed.
Like I said before, we were so fortunate to have a travel/lodging benefit as part of our insurance, so we began the process of relocating right away. My dear, amazing, gift from God of a friend Kelli agreed to be my secondary caregiver. This selfless person agreed to give up months of her life to go with me to Durham and wait. How many people are willing to do that? Not many.
So with all the extra housewares with could scrape together we traveled to Durham on a Sunday in October, not knowing how long it would be before I saw home again. Or really if truth be told, if I'd see home again.
We got settled in and I started pulmonary rehab right away. These folks don't play. They are there to get you in the best shape possible. A boot camp of sorts. I would go to rehab and spend the rest of the day on the couch.
This was five days a week. Kelli and Mitch took turns staying with me. Mitch came home only to go to work. On his days off, it was back to Durham. When Kelli got a chance to come home, she had to catch up on her own business and work at home. I don't know how they did it, but am so glad they did. And they fed me! My job was to exercise and gain weight. I had to graduate from rehab and gain at least 10 pounds to be considered for listing.
On October 30 I got a call from my transplant coordinator saying I had officially been listed.
Things just got real! I continued pulmonary rehab and completed the 23 sessions required, then began the maintenance rehab. Not really any different, just a little more independent and meets at a different time. We continued day to day living in Durham. I'd go to rehab, I'd sleep on the couch and I'd eat. Mitch and Kelli continued taking turns staying with me and making me eat. I had clinic at least once a week, sometimes more often if I had a special test scheduled.
Then on November 20, a Friday, Kelli and Mitch switched off. Kelli drove home to Sampson County and Mitch was there with me for the weekend. At about 2:30am my cell phone rang. It was THE CALL. I don't remember who was on the other end, it was the coordinator on call I guess. She said a set of lungs were potentially available if I wanted them. I was on the transplant list. I knew I'd be getting this call, I was still stunned and in shock. I got up and took a shower, because I didn't know when I'd get the chance again. As I showered I began to question whether I was doing the right thing. Was I really ready, was I really that sick? Because of the intense pulmonary rehab, I was feeling the best I'd felt in a while. I also prayed for the family that was mourning the loss of a loved one. How do you reconcile being excited about the chance of a new life, when someone else's life has ended?
I got dressed and we made the short trip to the hospital. Getting the call isn't a guarantee that the surgery is going to happen. The surgeons have to examine the lungs to be certain they are "good". Once at the hospital I was taken to a pre-op area where lots of blood was collected, IVs started, Xrays... it was a blur of activity that honestly I have very little recollection of. I do know I felt completely calm and at peace. Kelli and Tegan arrived and the four of us waited.
(this was actually during a clinic visit, but it was the four of us waiting)
I have to back up and tell you about Tegan. Tegan Johnston is a (was, she has since graduated) student at UNC studying photojournalism. She was interested in following someone through the transplant process. I was happy to have the opportunity to share my story if it could be helpful to others so I agreed. Tegan had personal reasons for wanting to document a transplant story from the recipients point of view, because she had experienced it from the donor family's perspective. Her older brother had died years earlier in a drowning accident and was an organ donor. You can see just some of the moments Tegan captured on her website. And read an interview she did about our time together here. She's a very special girl and I'm so glad God brought us together.
I got the call at 2:30 am, we got word it was A GO at around 10:45am.
They took me and Tegan back to the OR at around 12:15 and the first update came at around 3 saying they were just starting and at around 8:45pm they got instructions on how to visit me in ICU, as they were just finishing up.
They first saw me around 10:30pm.
Mitch has since told me how shocking it was to see me this way. Even though they had been prepared, I guess there's nothing like seeing someone you love with so many tubes and machines connected. At this point I was intubated and heavily sedated. I had a large tube coming out of my neck that was removing my blood and oxygenating it, ECMO. I had about 10 chest tubes and I have no idea how many IVs.
When I woke up, it was Tuesday morning and it was time to put those lungs to work.
It is essential for recovery to get up and moving as soon and as often as possible. It took a village to get me and all my equipment up and moving, but down the hall we went. Not far, but it was a start. And it was exhausting!
I believe it was at shift change on this day or maybe the next I heard the nurses giving report. Being a nurse, it caught my attention when I heard the words she was a full code. What? When?
Apparently, as the surgeon began to remove my worn out, diseased lungs, it became apparent they would not sustain me through the surgery and it was then that I was put on ECMO. At that time my heart went into a rhythm called V fib, meaning it was just fluttering, but not beating and pumping blood. And my heart had to be shocked. This was sobering to hear, but at the same time, it gave me a sense of relief knowing that these precious new lungs came at just the right time. My lungs had worked so hard for so long and just didn't have much more to give. Thank God for His perfect timing.
I'll stop there for now and the next post will be about my roller coaster recovery and 54 day hospital stay.