antibiotic or not

I have heard of people coughing up blood. I am very happy that I have not had that happen. I've been sneezing alot too so it probably is allergies. The weird thing is that my allergy test only showed an allergy for mold. And it's been pretty cold and snowy here so I can't imagine there being any mold growth.

I am in Kansas so Colorado is our neighbor. I recently called them and I'm waiting to hear back. My sister told me it took them nearly a month for a nurse to call her back. Was that your experience too?

I have been trying to get an appointment at NJH for nearly 6 months. Their intake process leaves much to be desires. My medical records had to be sent multiple times. NJH isn't quipped to receive records electronically, so hard copies must be faxed or mailed. After many phone calls and assurances that all my records were sent, I was told by NJH there was information missing. I was offered no help with trying to get the info they were asking for. I was left in limbo while they were supposedly trying to determine what to do with my referral. I called back after hearing nothing for a month. I was told I should be hearing from a scheduler in a couple of days. That was over a week ago....

You and I are almost identical. I also have SS. In addition I have rheumatoid arthritis both of those diseases can result in bronchiectasis. I have to be honest, I sometimes have doubts in my pulmonologist's opinions. he's a nice enough guy but he's very conservative with his treatments. and sometimes he even makes things up. And I'm not blowing things out of proportion by saying that. on September 25th of last year I had a procedure done called kyphoplasty. the surgeon made a mistake and injected bone cement into my pulmonary artery. that cement traveled to my lungs where it stays as a permanent embolism furthering my breathing problems. so anyway because it's so rare there's very little to go on as to how to treat this condition. when I Googled it I found case studies where doctors have treated it with six months worth of blood thinning medication and oxygen. so when my pulmonologist said I could stop after a month I asked him why just a month. he admitted he really did not know how long I should stay on it and he just pulled that out of the air. Then I told him what I had read online and he asked me if I wanted to stay on it. I told him I did not and I got off of it and have not regretted it since. But that gives you an example of what I mean when I say he makes things up. I'm happy that he was honest with me but I was a little surprised by his answer. And of course it makes me wonder if he makes up other things too. I would actually like to change pulmonologist but I don't know if there's one out there that is any better. at the moment I'm pretty down on doctors. Mostly because I've been let down by a few of them recently.

How true. I always check the consultant/clinic report and ensure that whatever they tell my doctor should be done, gets done. In the past, if I had not done this, I don’t think my husband would be still alive, or on the right medication (two years on, that has been changed time and time again). We have a very good Lung centre here at Wythenshawe hospital, S Manchester. My consultant, purely by chance has a young daughter the bosomest pal of my own grandaughter. It's a little disconcerting when your doc is the same age as your son, but he is excellent. Doesn't do private, nor would he leave my Ct RESULTS TO BE INTERPRETED BY OUTSIDE AGENCY (oops, caps left on). He wanted them interpreted by his own dept. staff. And repeated one I'd failed, to be certain.

It's the GP we don't really trust. I have my rheumy's letter from 3-4 years ago and an appointment to discuss why some of her recommendations haven't been implemented????

Keeping myself informed via forums is my best route quite often.

Onwards and upwards, hopefully. I also have arthritis with degenerative spine disease giving acute sciatica. IbS and diverticulitis. All more or less invisible and under self management. e.g We have melamine kitchenware which is lightweight, and doesn't break or chip so easily. That sort of thing.

all the best x

I agree that you have to stay on top of what is being communicated between GP and specialist; it was only on my instigation that I secured a follow up appointment to check on the progress of my Bronchx (since it was diagnosed 6 years ago) when I moved from Berkshire to Kent (there's no communication between hospitals within the UK, so I had to scan the letters I'd got from the Royal Berkshire Hospital and email these to my new specialist at the William Harvey Hospital in Ashford). Had I not requested this follow up, then my acid reflux condition would not have been picked up via the CT scan (and dealing with this has significantly improved my health) and nor would it have been discovered that I have a 'nodule' on one lung; this is currently not sinister, but will need to be monitored. NHS is a brilliant thing, but - because of its straightened circumstances - I think it's up to patients to sometimes take the initiative when seeking & securing treatment.

Thanks for your reply. I also have bad acid reflux. Im curious as to how it was picked up on a ct scan though? . Did you also have an endoscopy?

What are you taking for the acid reflux and how did it help the Bx? ID appreciate your input.

ROBYN

Hi Robyn

The CT scan revealed a slight hiatus hernia (so the stomach area was intruding into my chest cavity a bit), but I don't think that was the only reason that my specialist suspected acid reflux as, apparently, it's often seen in those with bronchX. The acid reflux diagnosis answered the problem as to why I so often had a dry cough (allergy tests had all come out negative), the theory being that acid reflux would irritate the back of the throat throughout the night, causing a dry cough throughout the day. My specialist advised that I use a bed wedge (to lift the whole of the upper trunk - not just the head - above the rest of the body), and to not eat or drink for the 4 hours before I got to sleep. I have to say that the results have been staggering - doing these two things has made a huge impact on my health as I'm no longer troubled by the dry cough. I don't need to take any drugs for it either.

I had a 'morning cough' for years too. After a CT scan, my chest specialist suggested that the problem might be acid reflux rather than the bronchiectasis on its own. I have never been aware of suffering any acid reflux but, after taking the specialist's advice to not eat or drink anything 4 hours before I go to sleep and to use a bed wedge (that lifts my upper body up by at least 45 degrees), the morning cough has disappeared. I still have bronchiectasis - making me prone to chest infections - but the chronic morning cough (and sometimes throughout the day cough) is gone. Might not be applicable to your case but it might be worth looking in to.

What type of arthritis are you trying to treat ? I have terrible arthritis in my hands and I have chronic pain in my back partly because of arthritis. My rheumatologist thinks I have rheumatoid arthritis but I definitely have osteoarthritis too. I was on opiates until recently and now I'm just trying to treat the pain with CBD oil and Excedrin Migraine . if you're not in the US or or are familiar with it, it is it's a combination of aspirin caffeine and Tylenol . So I never really thought about it but I guess that could be hiding a fever . But honestly I don't run a fever very often . I have never run a fever with a lung infection since I was first diagnosed.

you know it's pretty weird about doctors listening to my chest with their stethoscopes . I'm afraid I have lost all faith in that method of checking my lungs . One of the reasons is because they have never heard anything in my lungs since I have had bronchiectasis . that's been a little frustrating because they always say I sound clear and yet I'm coughing and you can hear the mucus . secondly I have heard a lot of other BX patients say the same thing. just today I had my regular doctor tell me lie lungs sounded good for someone with my lung problems... But I has not been this congested in a long time.

I have osteoarthritis, beginning w/one knee in my teens & now in many sites. C-spine is the worst. Left untreated it never stops hurting, hence Tylenol (acetaminophen) Arthritis Strength, 650 mg/tablet. Mostly i get by w/1 tab 3 x day, plus an occasional ibuorofen or 3. I keep Exc Migraine in reserve for migraines as my stomach cannot have that much aspirin & caffeine around the clock. Exc Mig, 2 tabs = 500 mg ea of acetaminophen & aspirin, 130mg caffeine. That's the same amount of acetaminophen as in 1 tab of Tyl Extra Strength. I used to take 2 ea regular tylenol & ibuprofen together, which is pretty much the same as what you're taking but the ibuprofen bothers me more now so just the high dose tylenol. I always have RX pain med on hand.

Ten yrs ago i started telling docs that maybe all the tylenol masked fevers because they weren't treating sinus infections due to my lack of fevers. In my entire life i've never run much fever, mainly because we documented in some drug studies that my normal temp, taken every day at the same time, no pain meds, same digital thermometer, was 96.7-97.4. Docs don't give a rat's bottom about that & continue to apply the "must break 100°F" standard. My pulmo doesn't take my temp unless i complain of feeling feverish.

As to allergies, allergy tests can be a complete waste of time tho not always. We can have "allergic rhinitis" without being technically allergic to anything. I'm allergic to a bunch of medicines but not officially to anything docs test for, or at least not within the usual timeframe. There is some evidence that some of us take 6-14 hrs to show a skin reaction. Since docs don't label what they sampled at each spot on our backs, they shrug if you go back many hours later & ask what that huge welt is about.

Nonetheless, we react to things and any mucus issue in the upper respiratory system can become a BX flare or infection. we need to pay close attention to these alkergic-like reactions.

There is another possibility with all the sneezing. There's been a new cold-like virus in the US this year, RPV. Comes with a ton of sneezing. I got it at Thanksgiving because all the kids & teens at Turkey Day were still recovering. Again, pay attention lest it travel down & settle in your lungs..

Docs & pulmonologists expect BXers to have a lot of mucus, and they expect to hear that mucus when they listen to our lungs. My gp recently said something new: Lungs are pretty junky but resolve on coughing, as in the mucus moves along in the right direction when we cough. If they can't hear it move, or if they hear wheezing or crackling/rales, then they feel the need to change things. This is why my pulmo says to breathe deeply thru open mouth, which gives him the chance to hear everything.