CF Update

Doctor Toe asks his father, "How do you feel?"

Some visits to the CF clinic are easier than others. Sometimes we go and they take the necessary measurements, ask us how we are, take a throat culture, and send us home. Sometimes we go and discover that Toe is sick and we need to add yet another medicine or protocol to the treatment regime. Some fall somewhere in between - they are not necessarily bad visits, but some piece of information or part of the experience catches us off-guard and we leave the place feeling slightly nauseous.

Our March clinic (early March) was one of those in-between visits. Let me say first, Toe's sputum culture came back negative for Pseudomonas aeruginosa a week later and we are incredibly grateful we were able to get rid of it, even temporarily. But that was later. This was the clinic.

New protocols for bacteria cross-contamination among those with CF now mean that Toe will have to get a mask when he enters the building and leave it on everywhere except in the exam room. No biggie. They also have new recommendations for households. We will be told details later, but the big two were 1) NO hot tubs (which we knew) and 2) NO gardening. The second one came as a shock to us. Toe burst into tears when they told us.

Let me back up a minute to explain our situation: We live in a rural area in a small town. Until this year we have rented houses, but Toe's entire life we have planted tomatoes and peas in pots in the spring. It is incredibly important to us as a family to have outdoor experiences and we have always believed that starts with your own yard. Toe has regularly helped with weeding and been allowed to dig in the dirt in the big pots where we planted tomatoes in the off seasons. We have avoided standing water because of P. aeruginosa and we have known it grows in the dirt, but we believed that if it were a true problem, the doctors would let us know. We just bought a house and were planning on growing many vegetables together in the back yard... We're not huge gardeners, but we had big aspirations.

So, back to the clinic --- Ben (our nurse) says, ".... so no hot tubs, and no gardening." Toe bursts into tears. Ben looks shocked. Toe sobs, "I was just pulling ivy yesterday!!!!" (which is true). Ben turns to his intern and says, "I hate this sometimes, having to tell families things like this." Ben tries to assuage Toe by telling him he can do some yard work - he can mow the lawn, he can pick apples from the trees in our back yard. We get the kid calmed down. But the damage has been done. A huge chunk of our lives has just fallen away. I don't know how to explain this. In the scheme of things, this is little, but to us at the time, it felt catastrophic.

Toe's height/weight ratio is also down. He is still growing. Like a weed. A skinny weed. Too tall and not fat enough. He has genetics to thank for that.

The doctor also discovers "trace clubbing" on Toe's fingers. People with CF sometimes get clubbed fingers and toes, but we have not noticed anything with Toe. It is only a slight swelling around his cuticles, but noteworthy as it can indicate lung inflammation. The doctor had Toe get a chest X-ray (this happens once a year and it was time). Toe's X ray went smoothly and the results are that things are pretty similar to last year's X-ray. There is some mild airway thickening .

Overall, it was a fine visit. Toe's chronic cough has gone away. He was cheerful and even took the throat culture with no tears. But we left feeling unhappy... a strange discombobulation. My kid can't garden with me. His height/weight ratio is off again. He has beginning indications that CF is affecting his body... None of this should have been surprising; but I have been unable to write about it until now.... Yeah. That's all I really have to say about that.