B. Cepacia info

anonymous

New member
Hi I'm new here. I'm 31 and was diagnosed w/cf at age 29. I tested positive for the deltaF508 mutation and culture p. aeruginosa. I've been sick since 10/18/04 and can't seem to reduce the exacerbations.. I'm on colistinand cipro. Since I'm not gettingbetter I have to go back to the doctors for more tests.
I am interested on knowing the diagnosis work up for B. cepacia
1. how it's transmitted from person to person
2. are there any physical symptoms?
3. What's the treatment

Any info would be greatly appreciated.
Thanks,
Amy w/cf
 

anonymous

New member
54 CF 4.5 years out TX cepacia.

Cepacia can cause a rapid downturn in PFT's. As with pseudomonas, you give a sputem culture. It is treated with antibiotics and seems to rapidly become drug resistent. Cepacia is a bad actor and potentially fatal in a short period of time.

You can get the bacteria from others, including a CF clinic, in the hospital, shaking hands or from black onion mold, riparian zones.

Are you seening a CF clinic?
 

anonymous

New member
Thanks for the info.
I'm not at a CF clinic . I''m at a clinic where they treat adults w/my similar condition, primarily lungs. I don't have the other aspects of CF. If my doctor did suspect cepacia what test would he do?
presently my pft's are 70% o2 98%, but I have been sick since 10/18/04, with exacerbations and a sinus infection . this past week I got a cold from being with little kids, so I feel even worse. The pain in my lung has increased too. I'm going for a cat scan this week.

About the onions, I have onions at my house that I use for cooking, can i contract cepacia from that?
What's riparian zones
Thanks again for your help!
Amy
 

NoDayButToday

New member
Amy,
Have they tried any other meds besides Colistin and Cipro? Such as Tobi, or have they mentioned IV medication as an option? If you haven't done IVs before, it can seem like a scary thing to do, but they do work magic sometimes. Do you know what the Pseudomas is coming back sensitive to?
 

anonymous

New member
Coll,
Thanks for replying.
I was on tobi prior to colistin, but it wasn''t helping. I had only been on tobi once prior to that and this is my first time using colitin. IV meds were discussed, but my dr didn't wasnt to admit me to the hospital for fear of catching other bugs, but did discuss about doing IV treatments at home. How does that work?
My pseuda monas profile is actually good . I'm senstive to cipro,levaquin, tobi, colistin a some others that aren't as strong a medication as colistin
Thanks,
Amy
 

anonymous

New member
I've had home IV's a couple of times. I went to the hospital to have a PICC line put in my upper arm. This is in place of the IV line that is sometimes put in close to your wrist, except that it didn't have to be replaced during the couple of weeks that I was on IV's (unless there are problems w/ the PICC line such as blood clots, etc). Luckily, I didn't have these problems, but I've heard of others that have.
A home medical type nurse came in & hooked my IV's up for the first time at home & one of the nurses came back when it was time for the IV's for the first few times, letting me do the hook ups & flushes by myself the last couple of visits, then I was on my own. It is very scary to have that responsibility, but they were just a phone call away if I had questions. After a while, i got comfortable with it & it wasn't a big deal.
After the IV's were done, the home nurses removed the PICC line in my home & that was it!
Like you mentioned, I had a spell for months when I just couldn't get over the hump & was not feeling better w/ antibiotics, a round of IV's, etc. After doing a sputum culture, I was diagnosed w/ a staph infection (MRSA) and after getting that under control, I've felt much better.
If you haven't had a sputum culture done lately, ask for one, there could be an underlying reason why you're not getting over this.
 

JennaB

New member
This Cepacia sounds scary. I have actually never heard of it. So it is diagnosed from a sputem sample?? I went to the doctor today and should be hearing the results from all of my tests in a couple of days. This has me paranoid <img src="i/expressions/face-icon-small-blush.gif" border="0">
 

anonymous

New member
Yes, It is found in a sputum culture. For me, Cepacia is scary. After my son cultured it, it turned our world upside down. It is one of the reason I am a big advocate on infection control.
 

anonymous

New member
I think the comment "potentially fatal in a short period of time" could be rephrased a little. My son, who is now 27, has cultured cepacia for the last 10 years and up until this past year has done quite well considering
he has cepacia. We have also known some cf patients that have had a transplant with cepacia and are doing quite well. Having cepacia, of course, is something that no one wants but does not automatically mean what this statement suggests.
 

serendipity730

New member
Amy.
Regardless of what symptoms of CF you have, you should be seen at a CF clinic. I am sure your dr is quite capable, but seeing a regular pulmonologist just isn't the same.
 

Diane

New member
HI Amy,
Ive had cepacia a bit over 8 years now, and it turned my world upside down for a while also like another poster said. I heard about "cepacia syndrome" where you decline rapidly after catching it and it scared the crap out of me. My symptoms were very noticeable when i got it, and i had never heard of b.cepacia before so i had no idea what was wrong with me. I started being so tired that even taking a shower was a major task and no matter what i did or how much rest i got it wouldnt go away. Then the body aches started along with low grade fevers , every day, same time of day , faithfully. then the more frequent coughing started. It seemed like as soon as i changed to another antibiotic and started feeling better it only lasted a day or so and the same symptoms came right back. Once my doctor saw in my sputum sample that i had b.cepacia i was almost relieved to know there was a reason for all my symptoms. It is scary but it is treatable. It isnt easily treatable, and some do better than others. By the way, i got it while in hospital for the first time for a surgery. I was healthy with little lung involvement, but that all changed after.... Its not too bad though so i am very thankful !! I also do all my iv treatments at home .
~Diane 39 / cf / diabetes / b.cepacia
 

anonymous

New member
Cepacia makes you the outcaste of the CF world. Your not allowed at meetings, walks, watched at clinic, isolated in the hospital. Of the genomovars at least one will indeed "potentially kill you, in a short period of time". In addition, most seem to loose PFT function at an increasing rate (my case). Some can live for years with this (I have had it for 9 years) but in the general scheme of CF life, not a good bacteria to culture.

If you culture cepacia, Columbia use to do drug synergy studies to find effective combinations of drugs. They still may be a resource, ask you CF doctor.

Without cepacia, I would not have needed a TX. Cepacia almost killed me in less than 4 years. That some "do quite well considering he has cepacia" does not change the statistics. Every time you get an letter on CF meetings, note the "cepacia's stay away" at the bottom, including the great strides walks. Cepacia wiped out CF camps in Europe and Canada, with high mortality.

In short, cepacia is a nasty bug that will change your life if you have CF. It will potentially impact the number of TX centers that will talk to you and may preclude any center from trying a TX.

If you have CF go to a CF clinic at least several times per year.

CF 54 TX cepacia
 

NoDayButToday

New member
Amy,
I've done Home IVs many times. I go to the hospital briefly (a few night max.) to have a PICC put in. Then I go home and my home IV nurse comes and brings all the supplies. My mom and I handle all the infusions by ourselves- it's really very simple once you get the hang of it. I've had the same nurse for a while now; it's nice to have an established relationship, makes the whole thing less stressful. My nurse comes about once a week to do bloodwork, change dressings, etc. etc. When the course of IVs is done, my nurse pulls the PICC line. So far, I've never had any problems with PICC lines *knock wood*. Generally you infuse 2 medications every 8 hours. Some medications are every 6 hours.

Have your doctors tested your culture for anything else? Funguses, less common bacteria, etc.
 

Emily65Roses

New member
Home IV meds are the one of the best damn things that the medical world ever came up with. Haha. I much prefer being in the hospital either not at all, or for a day or two instead of the whole two weeks. Generally I only go into the hospital overnight if I'm going on a new med (so they can watch for allergic reaction, etc). I had one IV med run (this past May I think) where I wasn't admitted at all. I have a port, so I just went home, accessed it, taped it up, and started the meds when they were delivered. The hospital will hook you up with a home IV company (in CT, mine is called Collins IV), and they send you anything you need. They deliver the meds, the needles, the dressings, etc etc. The meds generally come in these little baby bottles. They have balloons in them (where the med is stored), and when you open up the tubing connected to the med, it starts a vacuum (because of the balloon inside the bottle), which pushes the med out of the balloon and through the tubing. You don't have to push or squeeze anything, and you don't need an IV pump (at least in my experience). The one med I went on that wasn't in baby bottles (because it isn't stable) was Meropenem. This required a little more work, because I had to mix it myself. Then you hook the med up to the tubing and the tubing up to you. You hang it on a throw-away IV pole that's sent to you (though anything works, I also used hangers and stuff while I was on this med) and let gravity do its job. I adore home IV. It allows me to take the meds, and still be at home where I'm all around more comfortable. I can sleep in my own bed, spend time with my family and my boyfriend when I want without needing to wait for them to drive 45 minutes to come visit. I am capable of doing it all myself, though when I'm on them, generally my boyfriend does most of the work. I taught him how early on and he knows I'm often tired and not feeling well while on IV meds, so he takes care of all the infusing and tubing and what have you (he actually likes doing it, makes him feel like he's helping in a situation where most of the time he feels helpless). When it comes to bloodwork (which they will often do, especially with Tobra, to check your levels), the same IV company will send a nurse to your house to draw blood. If you need dressing changes done for you, they send nurses out for that too (though now that I have a port, I can do all that stuff myself).

It's all a matter of personal opinion. I know a CFer who prefers to be in the hospital the whole time because then the nurses take care of his dosages for him. But in my personal experience, home IV can be much nicer. In general, being at home can help you feel better on its own. The hospital is generally a stressful place, and people do better at home all-around. You're also more likely to be around those you love, those who help make your spirits better, if you're at home. Plus you can still carry on with your life if you do home IV. Hell, this past summer I babysit Mike's cousins on several occasions (hanging the Meropenem on a hanger and carrying it around with me). I had a summer job as a teacher's aide at the American School for the Deaf. I was IV meds for my first week at that job. The kids kept asking me what they were for (and actually, I had fun trying to explain in sign language what they were for), and I wasn't able to swim in the afternoons, but other than that, I was just fine. Like I said, to each his own, but I positively love doing my IV therapy at home. <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Thank you for clearing up my thoughts on the cepacia not necessarily being "fatal". My son is 32 and was diagnosed with cepacia last year. He seems to be doing relatively well, however, the unknown is sometimes harder to handle than the known. I have only learned bits and pieces about cepacia. I know that it is not a good thing but when I read that note about "fatal" it just about made me instantly sick.
 

anonymous

New member
I'm glad that you feel a little better, I know when I first found out about cepacia, I was also sick to my stomach. Of course it is very worrying still. especially when it come around to transplant as not all hospitals are willing to do cepacia transplants. We are very fortunate to live very close by to a fantastic centre that does do cepacia transplants.
Feel free to email me anytime at shelbaby@rogers.com
 
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