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.
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