Quicksand

WARNING: This is not a happy-go-lucky Eliana post. Proceed at your own risk.

Sometimes it gets hard to keep fighting this fight. All too often battling CF feels like struggling to climb out of quicksand: a lot of effort, but little progress. I’ve been feeling very quicksanded lately. At this point I’ve been varying degrees of very sick for almost 4 months straight. It’s exhausting and demoralizing.

Aside from soul-sucking fatigue, I think I hate the bleeding the most. It’s probably my most visually dramatic symptom, and it’s always been the thing that really made me feel the weight and severity of CF. But it’s also physically uncomfortable on multiple levels. The only way to get the blood out of my airways is by coughing, which can be very draining. Additionally, blood isn’t exactly a substance that’s supposed to go down your throat, so I’m usually hoarse and scratchy afterwards. And most bleeds don’t stop immediately, so I’ll be coughing up thick bloody mucus for hours or days afterwards, which is physically and mentally exhausting.

I bled again last night, by the way. I know it’s not over yet because I can still taste blood in the back of my throat. Here’s hoping it settles down sooner than later.

The most frustrating part is that we are soooo close to the release of a new drug that has potential to be extremely beneficial to me. Several years ago they started coming out with drugs that targeted specific CF mutations. It’s not a cure, but for the first time they were able to treat the underlying cause instead of just the symptoms. Unfortunately, none of those drugs treated my specific mutation combination. CF is recessive, which means I hit the genetic lottery and got 2 copies of the CF gene. One of my mutations is the most common one, but my second mutation is rare, which means it won’t be getting much money and attention when it comes to researching new drugs. However, they’ve finally developed a treatment for people who only have one copy of the most common mutation, and people have shown tremendous improvement in the trials. It’s supposed to go for FDA approval by the summer and hit the market by next year.

This should be good news, right? It definitely is! Unfortunately, while the drug can stop or significantly slow the damage CF causes, it can’t undo preexisting permanent lung damage. People have regained significant percentages of lung function, but they can only regain so much. So the lower I fall now, the lower I’ll be even if I get the drug and regain some lung function. Over the summer my lung function was 60%. If I had regained 10% of my lung function then, I’d be back up to 70%. I was still working full time at 70%! But lately, I’ve been struggling to even hit 50%. The more ground I lose now, the less benefit I’ll see – if the drug even works for me at all, of course, which is not guaranteed. It’s extremely frustrating that things have been snowballing out of control now when hope for a real treatment is so close.

So, I’m tired. I’m frustrated. And, honestly, I’m scared. I don’t know what’s going on with my lungs right now, or what’s going to happen over the next year. I’m just trying to push through from one day to the next, one handful of quicksand at a time.