I Need to Vent

I need to vent about a non-fat related issue.

My daughter has a disease called cystic fibrosis. Most people don't know what cystic fibrosis is. I know I'd never heard of it when she was diagnosed. I wondered why the doc got all emotional when he told us the test was positive. CF is a disease that kills somewhat slowly( in most cases). Many years ago kids with CF didn't live long enough to start school. However, due to advances in treatment, many are living long lives with life expectancy now at an average of 37 years old.

Our daughter has been relatively healthy but we fight this disease like crazy. She takes 20 to 25 pills a day, gets 4 to 6 breathing treatments a day(one in the car on the way to school), a "vest" for chest physical therapy, and inhalers. She also gets an annual pic line for two weeks of IV antibiotics. She had a port put in for three months of continuous IV antibiotics to kill a bad bug. They weren't sure 3 months would do it and thought we might have to do six. Thank God we killed it because the port abscessed and had to be taken out.

She goes through a lot. As her parents, we do too. We had to learn to change her port needle. Her skin was red and raw from the Tegaderm so she cried every week when we took the Tegaderm off. After the Tegaderm was off, I held her hands while she cried and her dad with trembling hands shoved the needle into the port site. No daddy should have to shove a needle into his crying daughter's side. It was awful.

I hate this disease. I hate what she has gone through and will go through for the rest of her life. She hates taking pills and getting treatments, but it is what we have to do to keep her healthy and alive. We don't complain. We don't even talk about it much because my husband has a good job and insurance and we feel blessed to have her.

However, just this year our co-pay for just ONE of her meds...Pulmozyme...went from $100 to $200 a month. Sure. We can pay for it, but what I'm angry about is that my husband has worked his butt off to be successful and this is what he gets. He makes too much money for us to qualify for any assistance.

How can an insurance company do this to a family who is trying their hardest to keep a child alive?! I don't see how they can sleep at night. I'm starting to think they'd rather her be dead because they sure are making it hard to keep her alive!

My kid is a vivacious, outgoing, strong person, but at age 13, still trembles and holds mamma's hand when it is time to get blood drawn or get a shot. She no longer wants to take the "happy juice" before she goes into surgery so she cries, her teeth chatter and she clings to me right up until the last minute.

Nobody should have to go through this. No child and no parent. And nobody should have to pay a $200 co-pay to keep their kid alive.



This photo is from a time when she had pneumonia. Like I said, she is an upbeat kid and hard to knock down. This time she was knocked down. She coughed hard and constantly and lost a LOT of weight. For the first time I was afraid she was going to die. The light had gone out of her eyes. She was tired. Thank God she recovered, but a 24 year old down the hall didn't. She died of CF the day we brought our daughter home.

Edit: The reason this is on my mind is that I just found out earlier today that we don't qualify for yet another program. I have a call in to the company that makes Pulmozyme to see if they will help us. We'll see what happens.