My oldest grandson, K, started his Sr. year at the end of August. I’m praying that I get to see him graduate. Deep down I’m not so sure I will get the same with the other three but I try not to dwell on that. I’ve been very fortunate in my life, so people never get to experience any of this so I shouldn’t be saddened by that idea, I should just learn to be more thankful for what I do have.
I’ve also met with the new lung dr., Dr. B. I know him from working at St. E’s hospital prior to me changing jobs/hospitals back in 2017. He’s very knowledgeable and I believe may be the head of the lung department. He gives me his personal cell phone and says to reach out with anything I need and then apologizes for me having such a serious diagnosis through no fault of my own. He says that giving a diagnosis to someone who has smoked all their life is kind of an expected thing and it doesn’t really affect him but it’s when someone’s body has turned against itself and knowing that the prognosis is bad unless you can get a lung transplant is a tough pill for a dr to swallow.
I’m not really sure about the timing of the next event, I believe it may have been August, possibly September but I remember the day like it happened yesterday. The event itself doesn’t have anything to do with my diagnosis but my ability to respond to it and the emotions that it provoked does have a bearing on my story. My siblings had planned a “sibling vacation” earlier in the year but I just didn’t feel that I could go at the time that they were planning it. Well, I think that maybe that was a God-driven decision too as on the very first night that they had all gathered in Branson, MI my mom went missing. Or at least that’s what we thought. My dad called me and said that he couldn’t find my mom, he had fallen asleep and when he woke up he couldn’t find her. She has dementia but she doesn’t normally wander off, well I say that, but my sister-in-law has found her in the abandoned barn on their property before. Luckily, I only live about 10 minutes from my parents’ house, so my son and I head over to help my dad look for her. In the meantime, their neighbor was also out looking for her and located her just as I pulled in the driveway. But on the way there I was in pure panic because I didn’t know how I was going to be of any use because of my inability to do ANYTHING! At least that’s how I felt at the time. My parents needed me and I felt worthless. My mother was fine, but it was just another reminder that life was never going to be “normal” for me.
At the beginning of September my husband and I finally take a day trip-I don’t think we’ve done anything all summer. One of the places we visit is Punderson State Park. We walk down to the boardwalk but the climb back up is extremely difficult. I think my days of doing any kind of walking that isn’t flat is over. We stop at the bike trail on the way home and use our scooters for the first time. It was a nice way to go more than a few hundred feet. I hate that everything I do, even when I’m having a good time, is always marred by my illness. I had a great afternoon but all I can concentrate on is my limitations.
In October, another round of evaluation tests in Cleveland. I also meet with an infectious disease dr (routine) and with a GI specialist. She reviews all of the tests from my last visit. She states that while the manometry test shows that I do have some impaired swallowing it will not require me to need a feeding tube after my transplant. I am grateful for that. I will, however, need surgery several months after transplant to correct my GERD, called a fundoplication. And she is going to order me a MedCline pillow so that I am sleeping more upright now to reduce the aspiration of stomach contents at night. Otherwise, all tests are fairly stable, come back in another 3-4 months. The MedCline pillow shows up about a week after my visit. I think it’s huge and takes up my whole half of the bed. I feel like I’m sleeping on a mountain and B is in the valley – apparently no more cuddling to fall asleep. It’s takes a little while to get used to it but I do notice that I’m not coughing in the mornings as much anymore.