Bronchiectasis exacerbation

[Steve7n19]

I'm not sure if my intro post went through. In it were a couple of questions related to Bronchiectasis exacerbations without pathological bacteria being cultured in the sputum. I explained that for the past three years of this disease, I have always had the exacerbations with Pseudomonas aeruginosa present. I am concerned that my symptoms of exacerbation (increased cough, wheezing, moans and groan sounds) from my lungs which feel saturated, might be evidence of a downward progression of my disease. Iv Ceptazadime for 21 days helped previously, but this is a concern for me. Any thoughts out there?

[mrsmummy]

Hello and welcome to the forum. I can't see any previous post from you. We have a few very knowledgeable members with bronchiectasis and hopefully they will see and respond to this post.

[peege]

Hello, a warm welcome from me too.

I can't offer any thoughts I'm afraid, others will come along but a few bronchiectasis members with similar experiences are unwell at the moment and struggling .

By the way, I noticed you wrote a lot of information on your personal profile which most people won't see. Most people read and reply to 'posts'. You could copy all that interesting information to a new post? Peege

[cofdrop-UK]

Hi Steve and a very warm welcome to you.

Re your personal profile re your MIL and her granddaughter with CF, you might find this link interesting.

cff.org/What-is-CF/Genetics...

Am I right in thinking you are from the States?

I am sorry to hear you have been diagnosed with bronchiectasis. I’ve had it a few days off 70 years now from babyhood. There are quite a few of our BLF family who have had bronch since baby or childhood and many who have pseudo.

We have all experienced false negative sputum cultures. There can be lots of reasons i.e. the sample might be from an area where pseudo is not active, the sample has deteriorated as it has been left too long either at home, in transit or sitting around the lab, or it has not been ‘cooked’ for long enough to show up the pseudo. Another reason could be that nebulising Tobra (I think that’s what you said in your profile) is doing it’s job. It is possible of course that it is not a false negative..

Although the cultures can be a very useful guide, I often go by how I feel. If you are feeling like you have an exacerbation then you probably need to see your pulmonologist or primary doctor. You could try using the vest twice a day rather than once in the meantime.

Let us know how you get on.

Please ask anything you are concerned about as there will usually be someone around who will be more than happy to help.

Cx

[Steve7n19 in reply to cofdrop-UK]

Thank you for the response. I think your description about the sputum sample is an excellent point of view. That may have been the case, with the manner in which my cherished lungs provided it, and the reluctance of the nurse to let me carry the sample to the lab directly. Lunch time had approached, and who knows how long the sample sat there before submission. Yes, I live in the San Diego area. I am a recently retired dentist, with six sons and one daughter, who have given us 19 grandkids so far. I am blessed, and have had a wonderful life. The CF status is my wife's niece, no blood connection to me. Her brother is a carrier, and when our grandkids started arriving, our HMO did a blood test on my wife to rule out her carrier status, which was negative. Her niece is nearing 30, has two healthy children, and is now doing some sort of genetic treatment that has helped her lead a nearly normal life. We keep our distance, as she is also colonized with Pseudo. I have increased my vest from two times a day to four, and I think the steroids are calming things down a bit. I have a question (I hope this post is not too long) concerning chest x-rays and radiation exposure. Do you automatically get more chest x-rays with each exacerbation? I cannot count all the x-rays and c/t scans I have received since this started. I had a melanoma taken off of my scalp in January, and now it looks looks like a melanoma growing in my chest. I have had my share of sun exposure here in sunny San Diego that could account for the scalp lesion, but rarely went without a shirt in the sun. I appreciate this forum, as I know of no other people, besides my mother in law, who have this disease. I encountered thousands of patients, none of whom claimed this disease on their health questionnaire.

[Steve7n19]

Here is my original intro post.

Three years ago I developed aspiration pneumonia during the night, not using my cpap machine for sleep apnea. My life changed forever, as I ignored the chronic cough etc., sputum production, etc. No fever, just coughing day and night for a month. I never had a lung problem before. The diagnosis of Bronchiectasis was made by HRCT, and my life with three inhalers with the Vest, and Toby inhalation, all twice daily began. At present, I am up to four 20 minute sessions with the Vest daily. Last year, three hospitalization, three series of IV Ceptazamine for 21 days each via a picc line, and I am still going downhill. Pseudomonas aeruginosa is the main bug that keeps popping up. My 95 year old mother in law has had Bronchiectasis for probably 30 years, with very rare flare ups, also colonized with P.a. I suspect we toss the bug back and forth to each other. An interesting side note, she has a grand daughter with Cystic Fibrosis, and the gene was passed from my mother in law to her son. She is a carrier, by genetic determination. My goal is to outlive her, as I pledged to my late father in law that it would be my privilege to do so, and ensure her well being. I suspect, however, that she may well outlive me. My healthcare is via Kaiser Permanente, a huge HMO, and spares no expense at treating my many health issues. I have a question. I am now in what should be diagnosed as a typical flare up for me, lungs feeling full, congested, noisy sounds noticed especially at night (moans, groans, whistles wheezing etc. The noises are so noticeable, they can keep me awake. Yet, the latest sputum results showed only heavy growth of normal flora, and some sort of yeast. In the past, P.a. always showed up, as well as E. coli. Sinus surgery did away with the E. Coli last year--good riddance. Do any sufferers out there experience exacerbations without pathological bugs showing up in their sputum? I am concerned that this is the new norm for me, even while not being obviously infected. I am starting an oral antibiotic, steroids for 5 days, hoping for some relief. By the way, my pulmonologist tells me that women tend to do better with this disease than men, hence the challenge to my commitment to my mother in law of 53 years. I hesitate to post my story, as it is not very optimistic. Forgive me if this does not perk up anyone's day but I wanted to share "My Story" Thank you, Steve

[cofdrop-UK]

You are blessed indeed Steve having such a lovely family. It is so good to hear your wife is not a carrier - another blessing. Your niece sounds to be doing very well. In the UK people with CF are kept segregated from each other in the hospital environment. It must be very difficult when there are siblings, which there often are, living in the same house together. People with bronchiectasis are not segregated from each other. The general advice is that, although they say cross contamination could never happen, it is not considered a problems from a x contamination point of view for people with bronch to mix. Personally I am not convinced. I will post this link which you might find helpful. I was lucky enough to be one f the patient reps involved with this. I have withdrawn from this role now due to other health issues.

europeanlunginfo.org/bronch...

Best to keep to the reputable sites like this one, anything from the European Respiratory Society or European Lung Foundation and you will find lots of knowledgeable people, many from the States on Bronchiectasis R Us.

With regard to xrays - No it is definitely not usual in the UK to have an xray every time you have an infection, although we have to expect to have more than someone without resp problems. I have to say i get a little concerned, especially as I have had hundreds from being a baby and the little bit of concern I have is the amount of radiation in the late 40s, 50s etc. Also the condition of the equipment in those days. It does not unduly worry me now, except that I have scans for other health issues too.

I too have had skin problems - 2 surgeries in the same place on my face, which turned out to be pre cancerous. I think your theory of the sun is the more likely culprit. I know it’s not as hot here but I have very fair skin.

Glad upping the physio has helped you.

Love cx