long shot question

[Diane]

Gosh i know this is a long shot, but is there anyone out there who has b.cepacia who is doing really well? There has to be someone out there who is beating the odds or at least keeping up with it. Actually i am curious how ANYONE with b.cepacia is doing. How long have you had it, how is your doctor treating it? What are your current pft's? I read recently that the best course of antibiotics to treat cepacia with, is to use a combination of three at a time. While one may not be effective all by itself, the synergistic effect of three may be of benefit. Well, i tried this after reading it, and it seemed to help me stay off of iv's while i was feeling crappy. Anyone else out there have any other ideas? I was diagnosed with b.cepacia Nov.1997, I seem to hang in the fev1 range of 43% lately in the past few months. Last May i started using Glutathione orally to see if it would halp any, and it has made an incredible difference in how much energy i have . I used to be tired and lethargic a LOT , but since using the glutathione i have way more energy. I also noticed i have a bit less congestion. I am on oral antibiotics all the time, usually two at a time. Rotating every two to three weeks or so. I have recently started using the vest on a daily basis, and find that it helps me also. I had two pulmonary embolizations a year and a half ago due to large amounts of hemoptysis that changed my life forever. I know the hemoptysis isnt due to the cepacia, because i have been coughing up blood since i am 20 years old, and at that time had an fev1 of close to 100%. My doctor calls the experience a "bump in the road" . I had sinus surgery in 1996 and i believe that is when i acquired b. cepacia. I was healthy and well when i went in for surgery ( first time in hospital in 10+ years) with an fev1 of 91%.... and left after surgery never feeling well again. Well, now you know some of my story, i'd love to hear yours. Hope everyone is well ~ Diane 39/ diabetes/ b.cepacia

 

[anonymous]

Hey, Diane. We've talked before. My husband is 44, has b. cepacia (as well as a couple other bugs). He as diagnosed about 1.5 - 2 years ago. Before then, his health was, well, relatively normal except for a few flare ups. He didn't even do CPT every day. He never had PFT's below 90+%. He became short of breath, etc., and that's when he tested for b. cepacia. Since then, it's been a struggle. His PFT's have never risen. They are now around 30% and he just listed for a lung tx.I think the best thing for cepacia is to nail it right away. I know there are different strands, and different severities. We hope you can beat it! He takes bactrim every day, TOBI every 28 for 28 days, and two iv antibiotics when he runs a fever or becomes more congested. It doesn't seem like it ever stopped it. Maybe slowed it down.I know he feels exercise is very important - keeps everything loose & easier to cough up. I also know I am not telling you anything that you don't know. Sorry I wasn't more helpful. Good luck. You are in our prayers! - j

 

[Diane]

Hi, Yes i remember you and your husband. I also remember saying i would find out which strain of cepacia i have, and i finally did. I found out i have strain 3. I think you are right about catching it early. I think i had it close to a year before i was diagnosed.My symptoms were, terrible severe lethargy. even walking across the room was a major undertaking. Taking a shower was exhausting. i found myself in need of a nap in the middle of the afternoon. Then the sneaky low grade fevers crept in same time everyday and thats when i knew something was very wrong. i haven't done any chest pt in the past either. i started using the vest daily in the past 4 months or so and found it has helped get rid of the crackly breathing i have been doing for a LONG time. I am glad your husband is on the transplant list and i will pray that the wait isnt too long. Tell him to keep his chin up, someone is out there rooting( and praying) for him<img src="i/expressions/face-icon-small-happy.gif" border="0"> ~ Diane