Wednesday, October 24, 2012

I Need Your Help

So I think the time has finally arrived that I need to call in backup. I hate to admit, after 13 months free of oral antibiotics and almost 3 (3!!!!!!) years free of IV antibiotics, that I am feeling my lungs slip into that place we all know too well. I feel tight (wheeze!) and am coughing at night (ugh!) and seem to taste my sputum (yuck!). I really want to treat this as soon as possible because I don't want to get to the place that I feel really bad and have trouble caring for my daughter. I still feel well enough that I don't need to nap and can get through the day, but I can tell that the rate I am going that I will be in trouble soon.

Normally I would call in an order for orals, but my doc made it pretty clear that when breastfeeding there were very few safe oral options and I would most likely need a PICC. Not so excited about getting a PICC since I am allergic to chloroprep, and pretty much every adhesive they have ever tried to use. That skin protective stuff, yeah, doesn't work for me. I end up with oozing yucky blisters that take months to completely heal. I am also not looking forward to having a long blue rope hanging out of my arm and dangling in arms reach of my daughter, who thinks everything is food! So here is where I need your help!

  1. I am calling the doc tomorrow and want to know if any of you have taken orals while nursing for pseudo or staph. I am not allergic or resistant to anything and those are my only bugs. I am not willing to stop nursing so if there aren't any safe ones I will go for the PICC.
  2. If you have had a reaction to PICC lines (which I know from my last post about it many of you do) what have you done about it. I know I am highly allergic to chloroprep and have yet to find an adhesive I am not allergic to. Any suggestions or things that worked for you?
Thanks :)


  1. 1. Have you talked to your OB about this? My CF drs tend to be more conservative than my OB. I would ask them their opinion just in case.

    2. I have all kinds of trouble with PICCs, including adhesive issues. The opsite 3000 adhesive is a little better than the normal tegaderm, but does still make me have hives. However, the blisters is actually an interaction between the chloraprep and the adhesive. I used to get them too until a home IV nurse told me that the problem is that when chloraprep is applied and not allowed to dry VERY thoroughly (which takes much longer than most people think), it interacts with the adhesive and causes open sores and blisters. So, whatever they use to sterilize your site beforehand (and I would think they could use old-fashioned betadyne if you are allergic to chloraprep), make sure they wait SEVERAL minutes (like 4-5) to allow it to dry before putting on the adhesive.

    Honestly, though, I've found I just have to suffer out the regular allergic reaction. :( I take benadryl if it gets unbearable. Being on a regular antihistamine helps lessen the severity as well.

    1. 1. I had different insurance when I was pregnant because I was getting it through my job which I am no longer working at so as of now I don't have an OB. My CF doc is EXTREMELY conservative when it comes to meds and pregnancy/nursing. My doc said no way to many of the meds my fellow cysters took throughout pregnancy.

      2. After I started reacting to PICC dressings I did a little experimentation and asked for a chloroprep swab since I suspected that was the culprit. After my PICC was pulled and I had healed I swabbed my ankle and within 5 min my ankle was covered in red bumps so even without tape I react. :( I used Betadyne for my last PICC and the nice thing is it is a little more obvious when it dried since the color changes a little. I still had a nasty reaction though :(. I will absolutely ask about opsite 3000!

      I wonder if you can take benadryl while nursing..hmm I doubt it. I may just have to suffer through!

      Thanks for all the advice and I am sorry you react poorly to PICCs too :(

    2. It might still be worth trying to find an OB and get an opinion, or else call the infant risk line and run your potential orals past them. My CF dr is much more conservative than my OB and from what I've heard that's typical, because CF drs have less experience with meds in pregnancy. I tend to trust the OB more because they have so much experience of how the meds work in pregnancy.

      Also, I'm guessing you can take benadryl while nursing no problem - you can while pregnant... good luck with everything! And yes, like I said, I still have nasty reactions to anything they use, but those tips make it at least a little better!

    3. I don't technically have insurance that covers an OB so I think I will call the infant risk line. I kinda forgot about them! Thanks. Also, totally didn't know you could take Benadryl while pregnant so I bet you are right about nursing! Thanks!

  2. Okay I first off have to say that you have done so amazingly well to only need medication now!!!
    Here is what I have done. Throughout this pregnancy I have only been growing staph and have taken mostly Cephalexin or sometimes Sulfamethoxazole. They have worked pretty well. I am now growing staph and another bug I can't remember the name of and disturbingly also ecoli. My OB who is also my general doc put me on both of the above drugs at the same time as each bug was suseptible to each drug. I have been nursing throughout and since nursing have taken several courses of these antibiotics.
    In my first pregnancy I was growing staph and pseudo. I went on IV's of ceftazidime. I didn't take this while nursing as I was too sick and had to take something much stronger and that's when I had to stop nursing. Before this happened I took a course of oral zithromax(which I'm now resistant to) and during that time I fed my daughter formula but still pumped so that once the drug had left my system I could continue nursing. I would imagine that if you can take ceftazadime while you are pregnant it should be okay for nusring as well? The only thing is it smells like cat pee so I can only imagine how it tastes!! Don't know if this will help. Please let me know how you get on.
    As for the pic line I've haven't had any problems before however in England they use long lines instead and those did get infected.
    Hope this all makes some kind of sense(severly sleep deprived here : )

  3. I usually go 3-4 months tops without antibiotics so I am pretty shocked I made it this far. I think Cayston had a lot to do with it!

    Yes, you made lot of sense (and I totally understand sleep deprivation!!) Thanks for the names of meds you have taken in the past. I am going to ask my doc if he thinks these would be appropriate for me. I really want to avoid a PICC, but am not willing to stop breastfeeding so I may just have to suck it up and get one. Did your daughter accept formula well? Kaylee has never had a bottle so I am not sure if she would even take the milk I pumped and froze which wouldn't be enough anyway. Thanks so much for the help!!!

  4. The first time I gave my daughter a bottle with formula I was paranoid about giving her plastic and to me formula was like giving her McDonalds. I was freaking out as I gave it to her. She on the other hand sucked it down and the lay there all happy in a formula iduced coma and slept for ages. She had no problem taking the formula and then also the milk. I was the one with all the hang ups. In the end I got over it and in the much bigger picture it doesn't matter at all. I now have a super healthy, happy amazing 5 year old.
    The last time I ever nursed her was in the hospital while they were putting in the long line. Pretty traumatic. That's why I was hell bent on nursing my son for a full year this time around. So far I've made it half of that year however I have my first app. at the clinic next week and I'm not expecting a great reception if you know what I mean.
    If you aren't feeling completely sick and just need a "pick me up" then I would for sure try out formula and just keep pumping and discarding to keep up your milk supply until the drugs are out of your system. Good luck and please keep us posted.xx
    PS have you heard of other CFers culturing ecoli?

  5. I am glad your daughter did well with the bottle and formula. I was worried since it would taste different and the fact that Kaylee never had a bottle before that she might refuse it. And you are right, in the long run a little formula is no big deal.

    Great job nursing 6 months already! My docs encouraged me to nurse the first 3 months (if I was well enough) so I felt supported then, but I have not told them that I am aiming for at least a year. I hope your docs are at least somewhat supportive at your appointment.

    I have heard of CFers culturing e-coli before. I think I remember someone cultured it and the doctors believed it was due to acid reflux. The e-coli was in their stomach and got into their lungs because of bad reflux. Do you have/had reflux issues? I am sure that is not the only way to culture it though.