Can it be true that the end of summer is here? A few weeks ago I had a friend ask me if I had any blog posts planned. I answered, “Yes! I’ve got lots of them planned… but I’m too busy living life.” She simply responded, “Good! That’s how it should be!” She understood what I was implying. It wasn’t that I had a crazy hectic schedule and no time for blogging. It wasn’t that I didn’t want to do it. Instead, for the first time in what feels like a long time, our lives were not being dictated by disease and doctors and we were enjoying it to the fullest.
June marked nine months since Jody’s double lung transplant. Throughout this first year he has had bronchoscopies done every three months to check for rejection (some types of rejection can only be identified by tissue samples taken from the lungs). Praise God his bronchs have continued to show no signs of rejection! We did learn at his nine month bronch that one of the internal wires used to hold Jody’s ribs and sternum together is broken (which we suspected). At this point his bones have fused together well enough that there is no need for concern. The loose wire rubbing does cause Jody mild discomfort but as long as it is tolerable the doctors prefer to leave it alone.
Jody has made great progress and in June he was cleared to move his transplant clinic visits to every three months. This was a huge, exciting step for us! Throughout his life Jody had routine check-ups for his cystic fibrosis every three months. In the last few years those visits became much more frequent. The year before transplant it felt like Hopkins had become our second home. After transplant the visits to our second home continued weekly, bi-weekly, every three weeks, then monthly. Clinic days are long and take up most of the day, especially when driving time is factored in. You can imagine our excitement when in June (nine months out), Jody was cleared for visits every three months. It has been years since Jody has been able to go three months without seeing a doctor. Oh the freedom every three month visits brings!
At home Jody was also cleared to bump his weekly bloodwork to every other week. The doctors had a hard time finding the right dose of one of his anti-rejection medication because it frequently showed up too high or too low in his blood. Finally, after nine months, they seem to have found the dose that is right for him, which is why he is now drawing his labs every other week. Jody continues to monitor his vital signs and lung function twice a day so he can pick up on the slightest change and alert his medical team.
Today we sent our oldest daughter off to first grade. Not only does this signify the end of summer but also the nearing of the first anniversary of Jody’s transplant. How different our lives are today from a year ago. I remember how hard it was for me last summer to be constantly (or so it felt) inundated with pictures and status updates of all the wonderful things people were doing and fun places they were going over the summer (thanks in part to the prevalence of social media). Instead of sunny days spent at the pool or beach, many of mine were spent at a hospital bedside, and with concern for the life of my husband. Last year Jody and I even celebrated our ninth anniversary in a hospital room. I’m so thankful that this year, we rang in our 10th anniversary on the beach. It was one day, but it signified a lot more than that in my soul. It was the return of life and of things enjoyed. The rest of our summer included countless afternoons by the pool, multiple day trips to the beach, the Baltimore zoo, Lake Tobias, play dates, the Minion movie, birthday parties, time at the park, horse rides, fishing, Jody teaching a painting class of 40 people, a crabbing trip, a truck show, date nights and more. Our summer did not include any hospitalizations and only one doctors visit in the beginning of June.
The ending of summer is bittersweet. It has been so good and full of health. My stress level naturally climbs at the thought of the approaching cold and flu season and the diligence it requires to keep Jody healthy. But it’s worth it! I pray that God would continue to protect him from the germs that surround and that the upcoming winter would be just as awesome for our family as the summer has been.