I'm pretty open and realistic when it comes to my illness. But, this is something I have kept largely to myself. I have been fighting some (many) serious infections in my lungs. And, the two that are trying to overtake my lungs are types of nontuberculous mycobacteria (NTM).
I found out I had NTM in 2016. I did a year's worth of oral antibiotics and had my sputum tested monthly for a solid year before I was able to stop treatment. Now, keep in mind: there is no magical medicine that will get these germs out of my lungs. Once you grow these infections, they stay for life. You just have to find a way to manage them.
A year later, and one infection turned into two infections and that's where I'm at right now. I'm growing two infections that are creating tinier and tinier infections. But, my lungs won't bow down that easily.
I have been monitored very closely by infectious disease doctors, my CF clinic, and every other health care professional in my life. After I finished treatment in 2016, my body needed a break from the antibiotics so that my lungs wouldn't become immune to the only medication that helps. The bacteria aren't necessarily doing chronic damage to my lungs yet, so I was hesitant about starting additional treatment.
Then, after many discussions with all of my doctors, it was decided that if my husband and I wanted to have a child, that this is probably our only window. The thing about these antibiotics is they are not safe during your first trimester, however, they are tolerable during the remaining trimesters. Oh, and the treatment lasts a year.
So, the doctor said he would follow my lungs closely for a year and -- during that time -- I could try to get pregnant and then we would re-evaluate.
With a heavy heart and my lungs weighing on my mind, I said without hesitation, “Yes, please give me that time.” In that moment I thought, 'pshh, a year?' So much can happen in a year. I had all the faith in the world that I could give my husband and myself the future we wanted.
One year later, though, and no child. As I type this, I let those words sink in. They weigh on my heart more than you could imagine. Every time I'm out in public, I see someone who's pregnant. I see all my friends getting pregnant. I see cute baby clothes everywhere and as much as it brings joys to my heart, I can't help but question if I'm deserving.
My mom and I just went to the infectious disease doctor for my one-year evaluation. The night before, I tossed and turned wondering what tomorrow's appointment would bring. My nerves were sky-high, but so was my faith.
The day came and I walked back into the X-ray room and got into the position I knew so well, chest against the machine. After I was done, I walked out, and the tech said, “You look so healthy for a CF patient.” Was this a compliment or a punch to the throat? A thousand words raced across my mind and I wanted to spit words out like Eminem raps, but I just flashed a smile and said, “Have a good day.”
We next went to my CF doctor and he discussed how I'm still culturing for NTM and that now there might be a couple new strands of these infections. He said it's nothing to be too concerned about because my lung X-rays don't show “too much damage” other than what the CF has done to me over the years of my life.
But, he then told me, “We are going to need to treat this soon. How is trying to become pregnant coming along?” Those words hit me like a bag of bricks. I explained to him that it hasn't happened yet but that I just needed more time. But, do I have the time? Can I push this treatment back any further? Am I hurting my lungs by doing this to myself? I'm saying all of these questions in my mind but none of them out loud.
With a lump in my throat, I blurted out “Give me a few more months, please.” He said he'd give me three more months, but after that we have to start treatment to keep them from spreading more than they already have. I looked at my mom for reassurance, I felt the tears in my eyes but wiped them away before anyone in the room could tell how much this was affecting me, emotionally and physically.
To outsiders this might not be a big deal, but I'm 31 and the older I get, the worse my lungs and overall health get. We know CF patients don't live forever, and they don't often live to old age. I have had more friends die in my lifetime from CF than I can count. I have had to say goodbye to more friends than most people my age. That's heart-wrenching enough.
As my mom and I walked out of the hospital, I said my last prayer for this visit hoping that God heard every word. I started to tear up, I could feel the tears building but I refused to blink. In that moment I kept it together, for myself and also my mom. I didn't want her to know how defeated I felt at that moment.
After driving back with my mom, I left my mom's house to go home. I instantly felt tears forming. I drove about a mile before pulling over -- I couldn't hold back anymore. I cried more in that moment than I have in years. Am I racing against time?
When I got home I went straight to the shower, I don't even remember how long I was in there crying. My husband, Joseph, came home and asked why I was showering in the dark, and I could tell he knew I was upset. I got out and didn't have the courage to look him in the eyes. I felt like by saying the words I could break his heart.
Joseph is everything I ever wanted, and I know I am more than he bargained for. He knew I was sick when he met me. But, did I ever think how deeply my health could affect him? That I could be robbing him of a future child? When I feel like I'm lost and it's dark around me, he's the only light that guides me back. Am I his light or am I his darkness?
So please, before you ask us, “Are you pregnant yet? Are you going to have kids?” stop and think. Before you say something about us not knowing how to raise a child because we don't have one, stop and think. Because you don't know how badly your words hurt. Before judging me for my personal beliefs about being a CF patient and having a child, stop and think, because you aren't me. Instead, just send a heartwarming prayer. We are all fighting some type of battle and right now our battle is tough and lasting a lot longer than we imagined. And, we're constantly searching for something good to find a way out.
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