Wednesday, September 5, 2012

Visualize your cervix as a turtleneck

This post actually has nothing to do with a cervix (neither mine nor that of anyone else), but I appreciate the fact that you clicked on the link despite knowing there was a good chance I'd be discussing that particular part of female anatomy. Or turtlenecks. I mean, ew!

The fact of the matter is that there's no legitimate reason for the title of my post. That's just a little somethin' I was told multiple times while preparing for labor and delivery but as it turns out, NOT visualizing your cervix as a turtleneck is much cooler than carrying that mental image around for the rest of your life. So I suggest you stop thinking about your cervix, PRONTO! For those of you who don't have a cervix... well, what are you even doing here? Don't you know this is the cervix and turtleneck blog?

Oh, and we occasionally talk about bagels. BAGEL!

Okay, now that I've successfully wasted a good minute or two of your life (and no, you can't have it back... sucker!) I'll get around to what I'm really writing this post about. I haven't blogged for quite a while but I want you to know that it's because I had an absolutely incredible, busy, fun-filled and healthy summer! Unfortunately, as too many good things do, my health streak came to an end a few weeks ago.

I came in for clinic and my PFT's were significantly lower than usual, which was a little surprising because I'd been feeling pretty fantastic and I'd really been taking care of myself - being compliant with treatments, working out regularly, etc. Long story short, because my numbers were low yet I was still feeling good, we tried mixing things up a bit with my treatments (which is just a fancy person's way of saying "I haven't been taking Advair correctly for years and was finally shown the proper way to do so") and we added a daily acid suppressant to see if we could take care of some of the tightness I was experiencing.

Two weeks later I was back in clinic, ready to blow some pretty impressive numbers... only to be discouraged by blowing even lower than before! I began mentally preparing myself for an admission at that point, but was still a little baffled that I wasn't feeling worse when my numbers were so much below my baseline.

Come to find out, I have a new friend living in my lungs - stenotrophomonas maltophilia. Or, Harry, as I've begun calling him. Whether or not Harry is to blame for my lungs acting up, we aren't entirely sure yet, but we certainly didn't want to give him a chance to get comfortable in there. So, as expected, I was admitted yesterday. I'll likely be here a full two weeks, unless I make a miraculous recovery and my lung function jumps up significantly within the next week or so.

A friend of mine once told me that blogging/facebook/the whole online world is more of a winter thing, something to do when everyone is bundled up inside and bored out of their minds. I agreed with his theory, but added "yeah, wintertime and during hospital stays."

It's true, the boredom does tend to eat a person up and swallow them whole when they're stuck in a hospital room for weeks at a time. So I'm hoping to kill some of the monotony by doing a little catching up on this blog while I'm cooped up in here. Pehaps over the next few days I'll post some pictures and tell you a little more about my summer.

Well, that or talk about other inappropriate body parts...
 
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Does anyone have any personal experience with Steno?
I've never cultured it before and I'm getting some conflicting information from Dr. Google. 
Any info you have would be appreciated. Thanks! 

11 comments:

  1. I have cultured stenotrophomonas off and on for a few years. Honestly... I hate it. I started culturing it around the time my health took a dive, and I'm positive it's not a coincidence! However, I also don't have huge problems with pseudomonas, and I think they're about equal in the frustration-factor. Hopefully the fact that you've caught it quickly means you can boot it out the door pronto! What meds have they put you on? Timentin is like my miracle drug. Levaquin and bactrim are also great for me, although I can't take the latter anymore because I'm allergic. Actually, I'm allergic to Timentin too, among many others. And this... is why they hate admitting me. ;)

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  2. I actually cultured it a few years ago (but no one told me about it until recently). I only know that I cultured it once, wasn't sick at the time. It was never treated (I mean they didn't even tell me until we were trying to figure out if MRSA had ever been in my cultures before). But my doctor told me it wasn't really a big deal, of course he said the same about MRSA and I've really struggled with keeping my health, since it started hanging around. Something I NEVER had to worry about before.
    p.s. I hope Harry behaves.

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  3. Cindy - I've never been on Timentin, and I have a SEVERE (!!!!!!) allergy to Bactrim (which is a bummer since all three bacteria that I'm currently culturing show susceptibility to it). They have found that I respond well to a combination of Tobra, Mero and Minocyclene so that's what we're going with again. I did a little more asking around/research tonight and the general concensus seems to be that Steno is pretty hard to treat but generally not very problem-causing. I suspect that (as with all things CF) it varies by individual. I guess we'll just wait and see how things play out... but I really hope this just gets rid of it!

    Misha - I was also told (last year) that the particular strain of MRSA I had wasn't that big a deal, but once they finally changed my meds up to target the MRSA specifically, I felt MUCH better! My numbers came up significantly and I stayed out of the hospital for a while longer than usual (six months compared to every three or four). Coincidence? I don't really think so. Again, I think our bodies are so different that what may not be an issue in one person can really cause problems in another. It's frustrating, and it hurts my head to think about it too much! I hope you are feeling well and that YOUR "bugs" behave as well. :)

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  4. Yeah, I love bactrim - I wish I could take it still. Well, I don't LOVE it, since it makes me acutely ill, but it's very helpful. And yes, I do think it varies by individual. Some people I know culture it and don't have many problems, but some have experiences more like me. I'm hoping you're in the former camp...

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  5. I cultured 'harry' about two years ago. I'm fairly new to the CF world (diagnosed in 2008), so I did not know much about what was normal, and what was because of a certain bug. I had been feeling bad for some time and after being told that I cultured steno I did some reading around the net, And found out that Seno is in some way a 'serious' bug, and the reason why I had been feeling so poorly. I ended up on IV and my doctor changed my antibiotics to Promixin. I don't know if you have it in the US, I think it's under a different name... I no longer cultur steno, and I notice a difference from when I did. Hope you get ridd of it soon, and feel better. I enjoy reading your blog.
    Nordic hugs from Madrid :o)

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  6. Gunhild - Thank you for your comment! I find it incredibly interesting to hear how CF is treated in different parts of the world! I'm not familiar with Promixin but as you said, it may be called something different here. I'll have to look into it. I appreciate the information you shared, and I hope you are doing well!

    And I've never experienced a Nordic hug before, so thanks for that as well! ;)

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  7. I dont usually comment, but I have had steno a few times...right now being one of them. I've had a rough sort of summer and I think it might be because of that. I'm on home IVs of levaquin and ceftazadime, which steno is sensitive too. My Dr said some people are more affected by steno than others. The other times I had it, I was on oral bactrim and doxycycline for three months. I'm going to look up Promixin too...

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  8. Jenny, I just love reading your blog all the time. I hope you can get better and return home quickly! I think about you and pray for you all the time. I'm so sad that we lost touch there for a little while but I'm happy that we are in contact now. (Even if it only is the occasional comment on here or on facebook.) I just want you to know how much I admire and look up to you. You are truly an inspiration to me and I want you know how much I appreciate that. Love ya girl!

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  9. I have two permant residents in my lungs... one is the sane steno as you or "Harry" and the other is a staph. We can't seem to get them to go away so we treat them to keep them to a minimum. The IV we seem to use the most with these two are Merem and Levaquin. My Harry is resistant to most of the drugs so he's hard to treat. Luckily my Staph has a TON that it's sensitive to so we try knocking both out with the same meds. Around the same time Harry & his friend Staph took up residence in my lungs I also had Aspergillus hiding in there that we couldn't find until we did a bronch.... Once we got the Aspegillus under control I haven't had to much trouble with the other two.

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  10. I have cultured steno before. It has been a few years at least to my memory since I have had it! Knocking on wood right now. To be honest I don't really think we ever targeted it specifically treatment wise. I usually culture just more than one thing though. Psuedo is what was in there when steno was also found.

    Currently my culture shows the usual staph and now acinobacter. Steno, Psuedo and aspergillus are all gone!!! It is really strange. My doctore believes that the acinobacter actually killed off all three bugs or just took over. I have never had IV meds which I know is very strange in our community. Knocking on wood again. It is so fascinating how everyone with this disease is different when it comes to our bugs :)

    Wishing you a speedy recovery Jenny!!! Look at all those y's.

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  11. Thanks, everyone, for your input!

    I had mentioned to Cindy that we were treating things (I also culture pseudemonas ans staph) with a combination of Mero, Tobra and Minocyclene, but I was mistaken - we're actually using Levaquin instead of Minocyclene. I feel like I'm responding really well to the meds, so my hopes are high that this will get things under control.

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