Today was hard, really hard! And so is writing this post. This afternoon Jody had what was supposed to be his post-hospitalization follow-up in the CF clinic. You might remember from my last post that he had been on a mediocre antibiotic regimen because his kidneys couldn’t tolerate the antibiotics he really needed to fight the infection in his lungs. In between then and now his kidney function declined even more and they had to stop all but one of the antibiotics. This bacteria, which really Jody has been fighting since July, has taken its toll. A month ago Jody’s lung function was at 32%, today it is down to 28% (which is the exact number I was guessing ahead of time). He is now short of breath with almost any activity, to the point that over the last few days I have felt like I was watching him suffer. Treating this infection is complicated by Jody’s allergies, decreasing kidney function, and finding the right concoction of antibiotics. To be honest, the doctors are a little unsure why he hasn’t been able to get better. The concern is that if he doesn’t get better, he could get worse; I’m talking really sick.
Obviously this is not the direction any of us want things to go, his doctors included. But we need to be prepared for the worst. This lead the doctors to give us “The Talk.” This is the talk I have been dreading since the day I fell in love with Jody. Today we were told it is time to begin the transplant process. Why was this so hard to hear? Isn’t getting a transplant a good thing? Well, statistics show that the outcomes of lung transplants are not too great (which is why they like to wait until it is absolutely necessary, sort of a last resort). The average lung lasts five years, and only about 50% of patients make it that far out. I don’t think I need to mention what the alternative to a transplant is, you can image for yourself. Jody and I always knew this time would come, but after seven years of near perfect health we never dreamed his decline would happen so fast and when our children are so young.
Adjusting to this decline in health has been really hard on both of us. It feels like our lives are being ruled by Cystic Fibrosis. In addition to not being able to breathe, Jody feels like he can’t do anything (and really he can’t right now). I think sometimes he also feels like he is letting our family down (even though he knows this is not something he can help). I feel like I carry the weight of the world on my shoulders, being pulled in every direction. I walk around in guilt for not being able to be there for my husband because of my responsibilities to our children, and to work. It pains me to leave him lying time after time in the hospital without me, his spouse, at his bedside. I detest having to work when he is sick, and would much rather be taking care of him, but it would do us no good if I lost my job. I feel guilty for breaking routines and sending my children here, there and everywhere. I feel guilty for the burden being placed on those watching our children over and over. My heart breaks for our girls who are too young to understand, and sometimes become upset when Daddy can’t take them outside or pick them up, or even read them a book. And my heart breaks for Jody who is so young and talented, yet his body (or parts of it) is failing him.
This post may seem a little down, but it’s real, it’s raw, and it’s where we’re at right now. We’re struggling… but we’re surviving. We are trying to hold onto hope for our future. There are those who undergo a lung transplant and do well, who live lives they couldn’t dream of before. Lord let this be Jody!
If you haven’t figured it out already, Jody is back in the hospital. We speculated this would happen and packed a bag today, “just in case.” Jody jokes that we bought a Time Share at Johns Hopkins. The doctors are going to start giving him stronger antibiotics as his kidney function allows. But… if in time he continues to get worse, or if push comes to shove, they will forget about his kidneys and the damage being done, and they will hit his lungs as hard as they can. If this becomes necessary and his kidneys fail, he would begin dialysis and list for a double lung and kidney transplant. We don’t anticipate this happening but it was a part of “The Talk” we had today. While in the hospital they will begin some of the preliminary steps toward getting on the list. One positive thing I would like to add is that the doctor today was excellent! He was kind, even comforting Jody when he became visible upset. He took his time, and was patient in answering every last one of our questions. He even checked back on Jody before he left for the day, just ” to see how we were processing all of the information he gave us.” If we had to have “the talk,” I’m glad it was with him.
Please continue to cover us in prayer as the Lord leads. In truth, we just want our “old” lives back.