Love for Lauren’s Recovery

A note from Lauren: For nearly two years, I have been fighting for answers. What started as unexplained symptoms and abnormal findings has turned into countless appointments, tests, scans, procedures, and continuous monitoring. Along the way, I’ve had to fight multiple doctors and hospital systems just to find a care team who would truly listen to me and take what was happening seriously. I’m incredibly grateful to my care team at Emory Hospital in Atlanta. We still don’t have every answer. But after nearly two years of investigation, my doctors and I are about 99% certain that what we are dealing with is GLILD (granulomatous-lymphocytic interstitial lung disease), a extremely rare and complicated lung condition associated with my underlying immune disorder, Primary Immunodeficiency - Common Variable Immune Deficiency. (PI-CVID). There is no cure for GLILD, but there is a treatment. If we are correct, I will likely start an intensive treatment for it nearly immediately. On Monday, Oct. 5th, everything moves very quickly. I will be undergoing a VATS (video-assisted thoracoscopic surgery) wedge resection. During the procedure, my surgeons will remove small portions of my left lung so they can take multiple biopsies and hopefully finally determine, with certainty, what is happening inside my lungs. Getting to this point is incredibly bittersweet. I have fought and fought and fought for this surgery for so long. For months, I wanted someone to take the next step—to stop watching and waiting and actually find out what is happening. And now that it is finally happening, it also means that things have progressed to the point where my doctors believe we need to do something more invasive. It means I’m really sick - even if I don’t look like it most days. My lung function is declining. My imaging is worsening. And I am struggling more and more in my day-to-day life. It is terrifying to realize that the thing I have been fighting so hard to prove and prevent is actually happening. After surgery, I will be out of work for a minimum of two weeks, with a full recovery potentially taking six or more weeks because of the nature of the procedure. If we move forward with treatment, I will ultimately miss even more days from work. Jon will also need to take some unpaid time away from work to care for me during my recovery. I’m extremely thankful my employer has been nothing but supportive throughout this. But unfortunately, life doesn't stop when you get sick. The mortgage still has to be paid. The groceries still have to be bought. Our fur babies still need to be cared for. The bills still come. And while neither of us wants to ask for help, the reality is that this is going to put a significant strain on us. Both of our families are not local and do not have the ability to come and help physically assist with care during recovery. So we are asking for a little help getting through this chapter. If you are able to contribute financially, it will help us cover the loss of income and the unexpected costs that come with surgery and recovery. If you aren't able to give, sharing this page, bringing a meal we don’t have to cook, checking in, sending encouragement, or simply keeping us in your thoughts means more than you know. There have been so many tears shed, but after nearly two years of fighting for answers, I am finally taking this next step. I’m scared. I’m hopeful. I’m exhausted. God, I am so exhausted. And, more than anything, I’m ready to know what we’re dealing with and figure out where we go from here. To those who have shown me an outpouring of love and support already, I can’t thank you enough. Thank you for standing beside us through all of it. - L & J