I was hoping that you could answer a few questions based on your experience. You've mentioned before that your doctors said you didn't have to worry about avoiding babies or older individuals- is that true for brand newborns? Did you have to (or choose to) take any extra precautions when Mckenna was born? This is a major worry of mine because my cousins are all having babies that I would like to be able to hold and play with. I also hope to be able to try having children in the somewhat near future, and, although the situation is a tad different considering I would be the one carrying the pregnancy, it would be comforting to hear from a CF parent with MRSA about their experience. Another major concern that I have is that my brother Brian, who also has CF, doesn't have MRSA. I asked my doctor about precautions, as I will be seeing him at Christmas, and he said that we should avoid hugging, but that mask wearing isn't as crucial. Do you have any suggestions there? As much as it's difficult for me to accept that I can't hug my brother the few times I get to see him, I plan to do follow his suggestion, and I have considered wearing a mask anyway, just to be safe.
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Culturing anything new is never what we want to hear, but as you've seen me say already - not the end of the world. Of course everyone reacts differently to various bacterias, but I've been told that many US doctors don't believe that MRSA is a huge deal nor has a major impact on the lungs. They feel differently in Europe, but that's neither here nor there.
My lung function started to decline before I contracted MRSA due to "being responsible for my own health" and making poor decisions. I've had MRSA for about 10 years now, but through better adherence and an increase in treatments and exercise, I've been able to increase my lung function back to where it was 10 years ago. It's hard to know if MRSA has had any impact whether it be on lung function or "recovery time".
To answer your questions....
1. I asked as many doctors as I could and they all said the same thing - I did not have to worry about being around my newborn daughter. They said the only people that I would have to take precaution around would be those with no immune system (ie, chemo patients).
2. We did not take any special precautions with Mckenna.
3. A mask would only be useful if you are actively coughing. Otherwise, no contact and not coughing/talking in his direction should be enough.
I wouldn't worry a whole lot about it. Just continue kicking butt by taking care of yourself and discuss with your brother what would make him the most comfortable.
Beth · 632 weeks ago
She had some more serious bugs, including mycrobacterium absysess, and it's been theorized that MRSA actually helps keep the 'nastier' bugs away - mycrobacteriums, b.cepecia, etc etc.
As long as you have common sense when around your brother: no sharing drinks, towels, washing hands frequently etc. then you should be fine. My sister and I ignored the 3 foot rule and would still hug. Now that she's had a transplant we've cut down on our hugging time. haha.
I think when culturing MRSA it's more important than ever to be treating your CF aggressively, actively and preventatively. I found when I was only culturing PA we could treat my CF in a more 'reactive' manner but when I cultured MRSA, agressive and preventative was the way to go.
Good luck!
RunSickboyRun 96p · 632 weeks ago
Emily · 632 weeks ago
So, ever since culturing MRSA about 10+ years ago at this point, it has suppressed my Pseudomonas Aeruginosa to the degree that I rarely culture it, even from bronchoscopies. As a result, MRSA has become my primary infection-causing bacteria.
My advice to you is to either go full force to try to eradicate it (there are a couple clinical trials underway for eradication of newly acquired MRSA) OR to take the exact opposite approach and avoid treating it until you experience problems since it seems like you're lungs are doing pretty well right now. I say that because the toughest part about MRSA (at least for me) is that there are significantly fewer antibiotics to treat it than for other bacteria like PA -- and that is especially true for oral/inhaled antibiotics. Therefore, you want to minimize exposure to the ones that do work as much as possible to preserve them for further down the road and avoid building resistance as long as you can hold steady without them.
I also strongly urge you to encourage the CFF to invest in research for more MRSA drugs! If you take a look at the CFF research pipeline, you'll see there are proportionately very few on the horizon despite it's increasing prevalence among the CF population.
Again, I just want to emphasize that MRSA can play out in lots of different ways and it often doesn't end up being as troublesome as it has been for me, so I definitely don't mean to scare you. I know many people with MRSA just like Ronnie for whom it never ends up being particularly problematic. I sincerely hope you fall into that group and I think there's a good chance you will! Either way, I think it's useful to hear about different experiences and equip yourself with as much knowledge as possible so you're fully prepared no matter how it ends up playing out.
RunSickboyRun 96p · 632 weeks ago
Sarah Wilson Allison · 631 weeks ago
I know you are a big advocate for attending CF conferences. I have never been to one, but my clinic in Dallas asked if I'd be interested in sitting on a panel discussion for adults with CF. Of course my first question was, "how does everyone keep from infecting each other?" and they said most people wear masks and abide by the 3-foot rule. This experience seems a little surreal, but I am also kind of intrigued. Can you share your thoughts on pros/cons of attending a CF conference?
RunSickboyRun 96p · 631 weeks ago
Pro - Get to meet others. Get to share your experiences. Get to encourage others. Get to be encouraged.
Con - Have to deal with some boring talks.
Hope that helps. Let me know how it goes!!
Sarah Wilson Allison · 631 weeks ago