I just cultured cepacia

[anonymous]

Hi Everyone,
I have been in-patient for 13 days and I just cultured b.cepacia. Can anyone tell me what to expect? No one is giving me the hard core, non sugar coated facts. And I want to know what it is like, what can I expect, how others who have it deal with it, etc. I'm really in the dark.
And like I said, I think I have a feeling I got it here in the hospital because I've been here 13 days and it usually shows up pretty quickly on the culture....per my dr's advice.
I did another sputum culture and they are sending that out to try to confim what is going on.

I'd appreciate any advie because all I hear is that b.cepacia is like the black cloud. Thanks for your help.

Kelli
28 year old female, with CF, who is freaking out!!!!

 

[anonymous]

I'd appreciate any advice....
sorry trying to type and do my vest and I'm hooked up to IV's.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Oh Kelli I am sorry. It seems that so many people have such different experiences. It will be interesting to see what replies you get.

 

[LouLou]

Kelli, I don't have cepacia but I know there is a big difference depending on what class of cepacia you culture. Do you know more details about what you cultured? There are people on this site that know alot about it and I can just about guarantee that they will want to know what kind of cepacia you have.

Don't freak out. I know easier said then done. There are a lot of people living healthy, happy lives with cepacia.

 

[Diane]

Hi Kelli,
I have b.cepacia almost 9 years now. Cepacia affects everyone differently. Some have it and hardly know its there, some have a very slow decline, and some, sad to say , decline quickly. I was scared to death (when i first found out) that i'd wouldnt live beyond 2 years, since i read about something called "cepacia syndrome" where after getting cepacia, you decline very rapidly and die within 2 years or before. I couldnt even think straight after reading that, and cried for weks, and then decided i am NOT going to ALLOW that to happen ,and if it does i will give that dam cepacia a run for its money. Now what i did completely wrong is i never ever did any types of percussion or airway clearance ever before. Mainly because i barely had ANY type of lung problems till the cepacia showed up. I should have listened to my doctors when they advised i start doing airway clearance, and exercising regularly. I learned that a bit late ( after my first pulmonary embolization) and my pft's have dropped. Then i decided to try using the vest and exercising a bit more, and it helped immensly! I now am on a regimen of 3 oral antiibotics at a time( always) and rotate them every 2-3 weeks to avoid resistance. I go on iv's once or twice a year. To be honest the word cepacia scares the crap out of anyone with cf because it can be very bad and make you very sick. Since i have never been really terribly sick before and didnt start geting iv's till i got cepacia , that part was all new to me , and difficult to handle. Now i just have to do ym best to take care of myself and keep my self as well as i can. One thing i have to stress to you is........ ALWAYS WASH YOUR HANDS!! I keep hand sanitizer in my car and everytime i get in it, i use it. Having cepacia makes you more susceptible to other germs and colds etc. While in the hospital, ask the nurse for a box of alcoloh swabs and clean everything you will touch or even THINK you might touch, door handles, toilet handle, doorknobs, bedrails, phone, table, tv, ANYTHING !! The hospital is the worst place to be and where you can pick up the most problems. I also got cepacia while being in the hospital for a sinus surgery. My first time in hospital and i go home with cepacia. I was PI$$ED that no-one warned me that something like cepacia was even around and that i had to be cautious of getting it. I know i am going on and on because its hard to pack everything in one post. If you have any specific questions you can always email me......... Jinxnick@aol.com
Hang in there Kelli, It isnt all as bad as it seems.

 

[anonymous]

ditto what lou lou said...depends very much on what genomovar (fancy word for 'type') of cepacia you have. genomovar iii is "the bad one" so to speak, but everyone reacts differently to all of the different kinds.

good luck getting out of the hospital and feeling better,

laura, 27, with b. cepacia ii

 

[AllansGirl]

Allan had b. cepacia--Genomovar III--and lived for about 10-12 years with it. It's certainly possible to live many years with it, even the deadliest type. He believed, however, that it was responsible for his brothers' rapid decline, and from what he told me it certainly seems that was likely the case.

It was also Allan's biggest obstacle in trying to get a lung transplant. There are few centers that will perform them because of such poor outcomes--but although we had a lot of problems trying to find a center that would accept b. cepacia patients with Genomovar III, a number of them said they'd consider patients with other genomovars.

Please don't freak out. It's not an automatic death sentence and it varies so much in how it affects individuals, that it'll be hard to make any sort of judgement on how it will affect you based on the experiences of others here.

Much love,
Jessica

 

[anonymous]

Thank you for all the responses I have gotten so far. I appreciate them and they are more encourging than I had expected and at this stage, I'm looking for anything hopeful.
I know now to ask what "genovomar" I have, when the culture comes back.
I really appreciate your responses, thank you for taking time to comfort my mind and emotions!!!!
Thank you, thank you, thank you!
Kelli
original poster

 

[Allie]

You said no one is giving you the 'cold, hard, facts" I apologize for that. I think witholding information doesn't help anyone. My husband had genomovar III, and he deteriorated quickly due to cepacia syndrome, as Diane mentioned earlier. Unfortunately, they can never tell who will react that way, and who won't. We tried everything with Ry, and none of it worked. Some people live with it for 10-12 years, like Jess said. There's not much of a way to tell especially without knowing the genomovar. All you can do is try you best to stay healthy. Best of luck to you, my dear. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tonrsoul82]

This is kind of off topic, but just thought I would say this.
 This is my first time in this forum ( yah me for finding it)
AND I just happen to be in the hospital as well.  I am on day
14 and will be let out later today. ( My PFT was up over 85% this
morning).<br>
Good luck with your treatment.

 

[anonymous]

Hi there,

Sorry to hear that you're not well at the moment. I have had cepacia for 9 years now (I have no idea which genomavar) and have not experienced any decline in my PFTs over these 9 years.

The research out there indicates that 1/3 patients experience no change / decline in their health status, 1/3 experience an accelerated decline, whilst 1/3 unfortunately experience a rapid decline in health and even death (cepacia syndrome). It's interestingt that your doctor said that cepacia shows up quickly in a culture, I have always been told that it doesn't. In fact, I have read / been told that it can lay dormant in someone's lung for up to two years before showing up on a culture so it is almost impossible to trace the sourse of initial infection. Cepacia also takes up to two weeks to grow in the lab so, which explains why sometimes people get false negatives.

My health has deteriorated somewhat over the last 9 years, I take more antibiotics (orals for about 6 months out of the year), but I have had 6 years in between IVs. My recent FEV1 was 87% and to be honest, 9 years in CF is a long time so I am careful not to just blame everything on cepacia. My doctor feels it's been sitting in my lungs minding it's own business before the sputum culture techniques were sensitive enough to pick it up.

It is stressful hearing that you have cultured something new in your sputum but try to keep things in perspective, be careful not to get carried away with the hysteria that surrounds cepacia. There are other equally nasty bugs that us CFers can pick up. It makes me laugh sometimes when people say 'oh, you can live with it for 10 years' like your time is up at the end of 10 years. You'll find as people get older / live longer there will be more of us living with cepacia for 15, 20 years even. Take care.

 

[anonymous]

sorry that was me..
LB (aka Littlemisssilly)
29 fm / CF / CFRD and yes, Cepacia, to be honest, my sinuses cause me more problems than the cepacia!!

 

[Scarlett81]

Hi,

Sorry about this new DX. <img src="i/expressions/rose.gif" border="0">I have cepacia. You mentioned the 'hard cold facts'. In my opinion there just aren't any. It treats everyone differently. You have no reason now to assume you are going to die. However, you should take extra precautions.
I strongly disagree with people that say culturing cepcacia is a death sentence, or assuming they will die much sooner. I think it used to have that connotation. But there's new antibiotics coming out, TOBI, things that are particularly good at fighting the cepacia.
I've had it for 12 years. I had a decline in lung function growing up-a few percent each year. As an adult, my lung function has actually improved, by alot.
The thing to keep in mind is that this treats everyone differently. It has been real bad to alot of people-so that's why it carries this tag. But it is not the case that it kills everyone.

For me, I notice I form mucus that's maybe a little thicker than most-so I have to work really hard at my chest pt and airway clearance methods. I do alot with diet and nutritional things to avoid IVs if I can. If I'm getting a cold, I kind of go on house arrest, as well as do other things that up my regimen to get rid of it fast-without IVs. I think the cepacia also makes me more tired, and achy too.

I really try to avoid hospitalizations/and hospitals altogether. I always get my PICC put in and go right home on home IVs. That's more work for me but its more germ free.

As time goes by, you'll find how it affects you. I hope you're doing ok. I feel that its ok to be worried and even a little scared, if it motivates us to get up see what we have to do, and how we have to handle it.

Hang in there. Keep us posted how you are.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

I strongly disagree with people that say culturing cepcacia is a death sentence, or assuming they will die much sooner. I think it used to have that connotation. But there's new antibiotics coming out, TOBI, things that are particularly good at fighting the cepacia.

I've had it for 12 years. I had a decline in lung function growing up-a few percent each year. As an adult, my lung function has actually improved, by alot.

The thing to keep in mind is that this treats everyone differently. It has been real bad to alot of people-so that's why it carries this tag. But it is not the case that it kills everyone.

</end quote></div>

Disagree all you want, but that's the reality, particularly with genomovar III. It's swift and furious. Just because your experience with cepacia hasn't been too harrowing doesn't mean you're doing anything right personally to control it. You may have a less difficult genomovar.

The hardest part about treating cepacia is that it is exceptionally resistant. There are no antibiotics that can knock it out, only those that can keep it at bay and prevent it from causing flare-ups and pulmonary exacerbations. There are no new antibiotics coming out at this time. TOBI is becoming more standard, but that's mostly for PA and is not specifically targeted for b. cepacia. There isn't anything that's as you say "particularly good" at fighting cepacia.

-lightNlife

 

[LouLou]

lightNlife, will you share what genomovar you have and your FEV1 so we can have a better understanding?

 

[Allie]

I'm not LightNlife, but I'll share Ry's before and after for a better understanding of how violent genomovar III can be. 65-70% average before contracting cepacia. One year after contracting, approx 40%, one year after that, he was gone. Nothing could stop it. He was in that one third. Cepacia can ravage a person like a fire through dried grass. It's not always a death sentence, but for Ry, and for John, who recently passed away, it was. John's, I think, only took a year. SO you never know.

Hope that gives you an idea, Loulou.

 

[anonymous]

I am so glad I started coming here last Feb. I had no idea about cepacia. I called my clinic after that and asked why they don't tell people about this and if our clinic had any cases. Luckily she said no. But I was a little upset that they don't warn cf parents about contact with others and the risk of hospitals etc. I guess I should have been the one doing my own research - not sure why it took 9 years to find this.

Allie - I'm glad you explained what happened to Ry. When I first came here that was one of the first post I read - it scares you when I saw he was only 30 some. I guess I was in denial about my son (thought he'd live forever - just with added treatments and pills) Sometimes you wonder what happened when you read different post about people passing.

Mother of 9 yr old boy w cf
12 yr old girl no cf

 

[tammykrumrey]

I am so scared of cepacia. My 15 yr old nephew has been culturing it now for 5 years. I do not remember which genomovar he has, but I thought it was I or II. We were told it was not the worst one. This past year has been so hard on him. Last year his FEV was in the 80's now he is in the 60's for a baseline. He has been in the hospital for two weeks on IV b/c his FEV was 44%. After two weeks he is only at 53%. His dr. said he wants to keep him in for another week and run some more test on the sputum and try and find something else to help. I cannot help but worry that this stupid cepacia is starting to kick his butt<img src="i/expressions/face-icon-small-sad.gif" border="0"> Now, grant it, he cultures practically everything that I have ever seen mentioned on this site, so I am sure it is just a combination of problems, but I cannot help but be worried about the cepacia. But maybe I am wrong, and that has nothing to do with the decrease in his lung function, but I am sure it is making it more difficult to get it back up.

 

[Diane]

I just realized that i forgot to mention i have genomovar III . Wasn't sure till i recently got cultured for which specific one it was. What's scary about cepacia is that it can be very unpredictable . When i heard about Ry and Allan and then John, it scared the crap out of me, which is good because it will keep me on my toes and force me to keep in mind that i MUST keep myself as well as i can. Whats realy frustrating about it is...... it seems like no-one is doing anything at all to find a treatment specific to cepacia <img src="i/expressions/face-icon-small-sad.gif" border="0"> . The only thing my doctor and i ever found is using 3 oral antibiotics at a time .... That seems to keep things at bay .

 

[anonymous]

It may seem like no one is doing anything about it, but you're wrong. Antibiotics cannot just be cranked out like adding new marshmallow colors to cereal. It takes funding, research, approval, testing, approval, retesting, documentation, and lots of man hours. Researchers are working to the best of their ability, as are biochemists, and others.

The field of medicine does not function like the rest of the world with supply/demand. Only recently did things like Merrem become available.

I'm surprised that the "only thing" you've had done is 3 oral antibiotics at one time. Intravenous meds are more potent.