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catching up with b.cepacia
- Thread starter Diane
- Start date
Glad to hear people talk about cepacia. It is such a battle. I'm 44, and was diagnosed 1.5 years ago. Until about 2 years ago I was blessed with very good health. Since then, I've been on iv antibiotics more than 1/2 dozen times for 2 - 3 weeks. I have the deadliest cepacia (III), and my cultures were sent to MI for typing and NY for synergy testing. There are only two combinations that they hope are effective (no single antibiotic works of course). Cipro & Meropenem is the combo they give me now. The other combo is cipro and some drug that has to be given every 4 hours. My wife and I would die from exhaustion if not from cepacia! There's only one university that researches cepacia - University of MI, I think. Anyway, my PFT's before cepacia were about 95% all the time, then they were around 75% when I got diagnosed, then a year later they took a dive to 30%, they have never ever come back up, I'm on oxygen and I am in the process of trying to get my insurance company to cover a lung transplant. The lack of energy, the fevers, the coughing - it's very discouraging. I do about 3 hours of treatments a day when I feel good, not including IV's. Adding the IV's, and it shoots up to over 6 hours. And to think I used to say I didn't have time to exercise 1/2 hour every day! Then I have to work a full time job, be a husband and father. I never know if I should call the dr with every fever or just wait it out. Actually, I don't even know if the antibiotics do anything, since I will spike a fever in the middle of iv treatments. I also take TOBI, Pulmyzyme, Albuteral, Advair, and ibuprofen for lung inflammation. I have pseudonomos, strenotrophomonos & staph as well. I know what you mean about being treated special at the CF clinic. We actually go down the maintenance hall. We understand it's necessary, but we try to have a good attitude, even joking about how special I am. Right now I have insurance, but is a high risk (private) state backed insurance that is about to become insolvent, and I have no idea what we will do financially. We've poked around from time to time trying to find what's out there to help adult CF'ers with medical bills, but have never found anything.Regardless, I am thankful for every day God gives me. I pray they will continue to research new cepacia antibiotics. Since only about 6% of CF'ers have it - I don't know how high the priority is.Good luck and God bless to all of you. Thanks for listening. Greg
Hi Greg, I know how frustrated you must be along with also being afraid. Cepacia scares the heck out of me because you just never know what to expect. I know exactly what you mean about the fevers and coughing. The lack of energy i am so used to at this point, that i dont really notice it ,because it has become a way of ife already. I am certainly not one to preach to anyone what they should do or what medicines to take, but.... have you tried Glutathione? I was very skeptical about trying it since i have cepacia and poblems with hemoptysis. But i read all about it and also went on to read about it on the Glutathione message board, and i decided to try it. I can say that , very quickly, i started to feel much more energy. Ialso coughed a bit less. I was just on iv antibiotics for almost 6 weeks, and i am happy to say that this time i actually had energy to do normal things that i usually dont , when i am sick. I only take the Glutathione orally. I do no inhale it. It is advised that people with advanced cf disease, Cepacia, or hemoptysis problems, not inhale it. It might be worth a try for you, since you seem to be feeling crappy a lot of the time. Some people on the message board have had almost amazing results with it. I myself ,had some good results with it as well, but nothing outrageous. I also get my sputum tested for synergy, and it usually comes up that i am resistant to almost everything. Combos usually work THANK GOD. I was on primaxin ( merepenim) and Zosyn the first 4 weeks, then he switched me to iv Tobramicin, along with the primaxin, and also added oral cipro. I know what you mean about the idea of just one antibiotic not working. I havent gotten away with using just one antibiotic at a time , for a LONG time. I have had spells where for a few months i will feel great, and all seems well, as long as i take my medicine and keep up with the cepacia ( so to speak). Other times it seems to always out- run me. I just got off of the iv and i am now on tobi and biaxin, along with pulmozyme and albuterol once or twice a day. I also have diabetes ( 23 years now) insulin dependant. I hope like you do that they continue to do more research on drugs for cepacia. I dont now of you know this or not, but when i was diagnosed with cpacia, i heard they use cepacia on golf coarses ( in fertilizers) and also as insecticide. I was NOT happy to hear of this and wished there could be a way to put a stop to it. Well recently i read in a cf type of magazine that this is no longer allowed because of the effect it has on some of the people with illneses like ours. This is a good step i think, because at least it got someones attention that, cepacia is a problem that needs to be addressed in a bigger way. I Pray that discoveries will be soon made to help cepacia patients more than what is being done now. I wish you luck and i will keep you in my prayers<img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane
Diane,My wife and I read up on glutathione and then asked our specialist about it. She dismissed it. Said she had millions of dollars of grant money to test everything on lungs, and if something worked, she know about it. I believe we read in the CF foundation news letter that they are starting trials on it. I know by the time they figure it out, a lot of time will have past, but we like our specialist and trust her. Although sometimes we believe no one really knows about adult CF patients or what happens to longer living CF patients diagnosed in childhood because we are the statistic busters! The last time I was at the research hospital everyone came in to see me. I'm glad glutathione helps you, we will keep it in mind for a future possibility. Thanks for mentioning it.Are you always on an antibiotic? Do you always report to your dr. when you have a fever? I think zosyn was the other antibiotic - does that one get administered every four hours? How many times have you had your cultures synergy tested? They have never mentioned it to me again. What's the advantage of retesting?Yes, I know cepacia is a wonderful biopesticide. I live in a rural farming community, and I wouldn't be surprised if it had been used around here before it was banned. I do believe I caught this in the hospital, although I will never know. Sometimes I want to know, so I know who to blame, but I realize that doesn't matter. We just trust the Lord that he's in control. The local hospital we go to does not use individual bottles for nebulizer treatments - (they do for me now, because I insist) and my wife and I cringe because we hardly ever hear anyone wash their hands upon entering my room. Do you know which type of cepacia you have? How long did you say it's been since you were diagnosed? We wish you well, take care.Greg
Hi Greg, I have had cepacia now for a bit over 6 years. I know i got it from being in the hospital, because i was always very healthy and my pft's were in the high 90's. I hadnt been hospitalized in many many years ( last hospitalization was about 10 years before ,and for diabetes). I had sinus surgery in 1996, went in the hospital perfectly healthy and left never feeling well again. Given the fact that cepacia can survive for up to a year on a moist surface, and watching how bad a job the housekeeping staff did on cleaning he room, i know darned well i got cepacia from there. They didnt even once touch the shower, and their idea of cleaing a toilet was to pour some cleaning stuff in it and flushing it. Thats it, no wiping , no disinfecting.... It;s no wonder people hate hospitals, its a horrible place for us cf patients. Yes i am on antibiotics all the time. usually two at a time because one is never strong enough. Right now i am on tobi and biaxin. I also us my albuterol about once or twice a day. I have no idea what type of cepacia i have, and was surprised when my nurse told me there was more than one type. The Zosyn was administered every 8 hours when i had to do it. i have my cultures tested for synergy usually once a year. the reason they retest is because what the cepacia may be susceptable to at one time , it may be resistant to the next. This way they have an idea of what might work better the next time, rather than trying something that wont do much for you. I only repor my fevers tomy doctor if they go above 99.8 or so. I tend to run a slight fever ofmaybe 99.2- 99.4 a lot of the time forweeks at a time and it usually just goes away with an antibiotic change . When it doesnt go away and just persists and gets higher that s when i call the Dr. I agree with you about trusting God. We cant handle this alone, and even with all the medicines and everything we have to fight this with, if it is our time to go, then we will go no matter what. I thinki life itself is a gift, and we need to cherish each and every day. I know you know all this, but its nice to know someone out there feels the same as you do about it. I am going to ask my nurse to find out which type of cepacia i have and i will let you know. I am now curious myself. Take Care of yourself, and try to stay active as you can. ~ Diane
I do know that when a person cultures Cepacia, it is sppose to be sent to Michiagan to test for the strain. I am not sure how new this procedure is. I guess that is why I asked. My son has strain 3 and Cepacia syndrome. When our doctor called the lab in New York(the lab to test for antibiotics). He told us good luck. The same thing the lab in Michigan said. As much as I have researched the darn bacteria, I am finding out that I know about as much as the doctors know these days. Thank you for responding.I think the reason I asked was I was curious to find how people with different strain have responded, their treatment plan, and general health status. Since our discovery of Cepacia, we have now discovered 3 more adolescents with it. One of those adolescents has been asked not to return to school as there is another CF child in the district and his doctor told him he would have to finish the remaining of his high school on home bound. this darn bacteria just makes you feel so isolated in the world. My heart breaks for my son each time something new comes up..
Hi, How old is your son and how long has he had the b.cepacia ? I seem to do better with using two or three different antibiotics at a time. One is usually an inhaled one ( tobi or colistin) and the oral's would usually be either, minocycline, biaxin, cipro, bactrim, doxycycline. Is your son on constant antibiotics? I also use pulmozyme once a day, ( sometimes twice) and albuterol once or twice a day. I just started using my vest regularly and i think it may be of help. I also have been using the oral glutathione. I know cepacia is very frustrating and scary. Sometimes its in the forefront of everything and sometimes it can give you a break once in a while. It is hard to find out much info about it, so that leaves us feeling even more frustrated and slightly helpless. Im clinging to the hope that there will be a solution found to help all of us cf patients with cepacia. Ill keep you and your son in my prayers<img src="i/expressions/face-icon-small-smile.gif" border="0"> ~Diane
My son is 17 years old. He just cultured Cepacia for the first time in October. He has been on IV antibiotics since August constantly until about 2 weeks ago. I can tell that we will probably be back on them within the next appointment. This is also the first time he has been off Predisone in over a year. When on IV's he is on a combo of Ceftazime and Meropenim. He also takes inhaled Tobi and we are are considering adding inhaled Fortaz to hopefull keep him off IV's longer. He is also on oral zithromaz, oral bactim, oral Cipro. Along with this he takes Pulmozyme twice a day, Zopenex, Atrovent, and pulmocort, 3 times a day. To try to get him some relief from predisone we just restarted his Ibuprofen. For airway clearance he uses a combination of PEP and CPT(He still prefers CPT when not feeling well).Along with CF and Cepacia, Cory also has CFRD, GERD, Asthma. It has been a roller coaster of a year. We have been hopeful that we could keep him off IV's for 4 weeks but it is not looking like that is going to happen. The 2 IV antibiotcs are his only antibiotics that he has sensitivity to
Hi I am sorry your son is going thru all that at such a young age. What is his fev1 now in comparison to what it was before he had b.cepacia? How was his health before the cepacia? I hope i am not prying too much. I just wish i could help more, i wish i knew some secret i could tell you to make it lessen the problem. I also have diabetes ( insulin dependant) 23 years now. Doesnt exactly help things get any easier. I think in a lot of our cases with cf, all we can do is, pray and rely on God to help us. God can do things that modern medicine can not even come close to. I am not one to preach, so i will stop with that having been said. Try to keep your son as active as is comfortable for him. I dont know how your son feels about all this, but i would imagine he must get depressed about it. Remind him that he is not alone in this fight, and it sometimes helps to know that someone else is going thru it with him. Tell him to never give up hope, it is never too late for a miracle.... You or he can email me anytime.... jinxnick@aol.com ~ Diane
Thank you for your thoughts. I think that is the one thing with Cepacia, it has made us feel very alone and isolated.As far as an FEV1 he has lost about 35% since culturing Cepacia. He use to go into the hospital about once a year for a "tune-up". Cory hates all the isolation stuff so now we do as much as of it at home as we can. I would proabably say Cory has some depression issues, He doesn't have a lot of motivation. He has a hard time keeping up with his friends. He is already on an atnidepressant and I am thankful that he talks with me and him doctor about a lot of issues. We do have a great doctor and I do give a lot of prayer to him. I do joke with the offie staff that I see them more than I see my own mother.We just moved the start of August so we could be closer to the doctors(it was a 4 hour drive). Cory was sick before we even managed to get settled in. We never registered Cory for school. By the time, he was discharged from the hospital, set up on home IV's, had his Bronch, and adjusted to culturing the Cepacia, the semester was 3/4 over. We decided it was best to wait out this semester and restart next. I am worried about my decision and am afraid he will lose his motivation to want to go. He would of been a Senior this year but was already behind too many credits(from missing too much school and a very non coopertive school). Ok I am rambling. Again, Thank you. Before I found this forum, I couldn't find anyone that even wanted to talk about Cepacia. I would ask question or try to find anyone willing to talk about what they have gone through. It was like the "elephant in the living room" Everyone knew cepacia existed, no one wanted to talk about it
I've just read through the cepacia conversations. They sound very familiar. I have three children ranging from 10 to 16 yrs old and they all have CF and cepacia. The youngest got it first and I am sure that it was from the hospital. In the past, the hospital was very lenient about the cf patients having contact - until about 2 -3 years ago when they got a little stricter. Within the last month, we were told we were not welcome in the regular CF clinic. PFT labs, patient floors, etc. Now we will also have the 'special' clinic and in-patient floor for cepacia patients. We have not been into the hospital to the new isolation area yet - we'll see all of that after the 1st of the year. I understand it but wish they had been this proactive years ago and we may not be dealing with cepacia today.I know there are various strains of cepacia but I don't know which my kids have. How do you know the different ones and how different are they? They've done TOBI but are off now since it was doing little. They do not tolerate the ibuprofen - the middle child has alraeady had bleeding ulcers from meds. We have done the inhaled Fortaz (Ceftazidine) and now have moved on to inhaled Aztreonam with oral minocycline. Although they all have it, the oldest seems better to fight it and has been the healthiest. Strange that they all have the same genes and same environment but are very different healthwise. Has anyone ever tried acupuncture? or any other alternative treatments that help?We just take one day at a time and try to keep life as 'normal' as possible. I'm glad I found this chat, it may help answer questions and provide some insight to what the future may hold. Happy Holidays to you all and enjoy the season.