I have had a bumpy few weeks, and wanted to use my experience to flag up the importance of getting good information about the microbes that might be causing a chest infection.
I posted a couple of weeks ago about feeling unwell on Augmentin/Clarithromycin, which I was taking for a chest infection after a bronchoscopy:
Not only did I feel awful - couldn't eat, losing weight, sick, shaky and depressed - but, as it turned out, these antibiotics were not the right ones. When the infection started up again, it occurred to me to ring and ask if the hospital had lab results for mucus samples taken at the bronch (one of two). They did, and it was staphlococcus aureus, which sometimes lurks in stents, and which requires a whole different set of antibiotics (flucloxicillin). As soon as we heard this, the GP and I changed tack, and I am now feeling better, though still wobbly.
The moral of this story is that it is worth asking whether microbiology has been done, and what it shows. We don't discuss chest infections much on GRACE, but they are common in lung cancer and can be deadly, so it seems to me important to know and identify the enemy wherever possible.
Thu, 07/19/2012 - 07:20
CS, First of all let me say ! HURRY ! for you for tracking down your problem. Second, I'm so sorry you had to track down you own problem.
It's such a good example though of needing to be a main player in your own care. Even cancer, especially cancer.
Keep up the care,
Thu, 07/19/2012 - 08:25
I'm sorry for what you've been through but so happy to see your post. I had been thinking I wasn't seeing posts from you as often as usual lately. You're a great example of how patients need to advocate for themselves, speak up when things don't seem right. And it's great that we can come to this site and learn these things that better prepare us for our own journeys.
I hope you continue to feel better.
Thu, 07/19/2012 - 12:44
Thank you both - the good wishes are much appreciated.
I'm not in fact the world's greatest advocate for myself. I was all for curling up in a ball and not bothering the GP. It was my brother (a doctor, though not one who has anything to do with cancer), who chivvied me and in the end took it upon himself to ring up and tell the GP what the hospital should have told her. This has happened to me several times - at a certain point, I just can't do any more and am so relieved and grateful when someone else intervenes. So to all the relatives/partners/friends out there - thank you for bailing us out!
Thu, 07/19/2012 - 13:51
Thanks for the reminder, cs. . .and I too had been noticing your absence here. I'm glad to read that you're feeling a bit better albeit still a little wobbly. And, I thank your brother for taking the initiative. . .
Big hugs from afar,
Thu, 07/19/2012 - 19:17
Can we borrow your brother when we need to? Cuz I could use a bro like that!
Glad to see you back on GRACE!
Thu, 07/19/2012 - 21:26
Yes, a helpful reminder. Patients should not hesitate to advocate for themselves. I strongly believe that most people will do far better for being proactive (that's the real point of GRACE -- go find out for yourself what seems to be the best options, then ensure you're able to choose wisely with your medical team), but in my own clinic too, the squeaky wheel gets the grease. There are so many moving parts in cancer care that it's always a good idea to have multiple people trying to cover potential gaps.
It's also just glad to have you back here. I was close to sending out an online search party for you.