PF news from England

I read an article today about a woman in England who is working to raise money to find a cure for Pulmonary Fibrosis, which killed her father. The article is here.

The story she told of her father's illness sounded similar to mom's. He'd had trouble breathing and a cough. A lung scan at the hospital lead to a diagnosis, and quick treatment with steriods to slow inflammation and scaring. A few months later, sudden illness, and a few months after that, he succumed to the disease.

Mom had lung x-rays in 2003 for a TB test, which showed scarring in her lungs. They cleared her for TB, and did nothing else.

In maybe 2008, when she started having trouble breathing, they gave her an inhaler for asthma. I don't think it was until 2009 that they diagnosed her with PF, and she only received periodic care and steriod pills.

It seems like the man in the article received more serious care, but in the end it didn't help him. I don't know which would be better- having the doctors do more to no better outcome, or having the low standard of care I'm afraid mom received.

On another note, the woman in the article is running the New York Marathon to raise funds for PF research. I thought of doing the same for the CIM this year, but I haven't done anything so far. I feel bad that I'm not doing more. I'm not sure if it is that I don't want to be so public and open about it, because it is so difficult to talk about. It may be a little that I don't know how to raise funds, don't like emailing and posting online to ask for money, or something like that. But I know I should be doing something. I think mom would want me to, and I feel like I'm doing a bad job as her daughter by not doing that for her.

One Year

Yesterday, it had been one year since I last saw mom outside the hospital. I had an afternoon job interview close to city hall, and I took I Street toward West Sacramento. I was in the middle lane to facilitate getting on the bridge, and I saw mom waiting at the crosswalk at 9th and I Street, on the south side. She was walking home from the library. I saw her as I drove by, and wanted to turn around to talk to her. But I was on a one way street, in the part of the grid filled with one way streets, and by the time I decided to turn I was a block away and facing the potential of at least five blocks to get back to the same spot. By then, mom would have gone at least a block or two. So I didn't turn, and I continued home.

I called mom that evening to tell her about the interview. I wasn't surprised that I didn't hear back. I figured she was busy, or had the radio on, or didn't feel up to talking. That was common, and I figured she would call when she had a chance.

The next call I received was from the hospital. I was at John's parents house, and only checked my phone (which was on silent) because I was looking for something in my purse. I had a message from a doctor at UC Davis, telling me mom was in the ER, on a breathing machine, and asking for me to call. It felt like it took forever to get someone from the hospital on the phone. Then we left to go see her. It was around 4pm, I was mid-beer, and we were about to have dinner for John's dad's birthday.

A lot happened over the next two months. And now, mom is gone, and I wish so much that I had never received that call, and that she was still here.