Lung diseases: I have a lung disease called Bronchiectasis, they have tried most everything to help me breathe

But, to no avail nothing seems to be working. Anyone know of anyone that has this and if so, what treatments seem to work. I am 35 and they say i won't live to see 40.


http://www.nlm.nih.gov/medlineplus/ency/...

Hi,

I want to give you hope, information and from you I need some
questions answered.

Bronchiectasis is a permanent widening and rendering the
bronchial tubes ineffective. This can be hereditary, caused by disease such as cystic fibrosis, mold (aspergillous) or by frequent bouts of infections resulting in bronchitis or pneumonia.

The disease may be localized in a small area of one or both
lungs and that is it, or through time, more and more of both lungs
may progressively be affected.

It is diagnosed via breathing studies and CAT scans of the lungs.
Pulmonologists in large medical centers or teaching hospitals
with large Pulmonary Divisions offer the best prognosis.

Once the tubes are dilated and ineffective, they no longer function for aeration of blood and become prone to infections
since the muscles are gone and they no longer are capable of
clearing (moving) mucous and this results in frequent infections and the vicious cycle continues.

Also there can be small or large amounts of blood coughed up
during infections as the arteries bleed.

So what is your status? One lung or both? Severe in both lungs
or one? What is the cause in your case? How long have you
had this? Have you had lung studies, CAT scans and are you
seen by pulmonolgists? I need to know this. Also is there any
asthma?

In my experience, antiobiotics are essential; zithromax also helps
to stop any mild/moderate bleeding. As soon as infection occurs
antibiotics are needed, even in between, sometimes on a rotating basis. Antibiotics need to be used for far longer time
periods than for the average individual.

Also, do you have reflux? Prevacid or Nexium twice a day and an
elevated bed at the head (at least 6 inches) helps and is essential. Reflux will aggrevate this condition.

Bronchial dilators, (short acting) I like Maxiar Autohaler(2 puffs 3x daily) and Serevent Discus 2x daily (long acting); both would be used continually. Spiriva once a day is usually more effective than Atrovent. Then the steroid inhalers, such a Flovent or Qvar (2 puffs 4x daily of Qvar 80 mcg.). Flovent is more potent but causes too much adrenal suppresion too often.

Then guifenisen to facilitate mucous loosening. Lots of liquids to
drink always. Annual flu shots and pnemonia shot every 6 or 7 years as new strains of virus are added.

If there is aspergillous mold that is causing the problem, a fungus drug regimine helps to control it as do prednisone bursts.

But more details from you are needed. Also which state and near
which large city do you live? You need the best medical center.

There once was a boy who had asthma and could not attend
the first 3 years of elementary school because of it. Later he
went to medical school and then developed TB, which was cured. He battled the asthma and lung problems his entire life
but became the chief pulmonologist and taught more pulmonologists then anyone before him. Most of his students
became chiefs of pulmonology in hospitals across America.
He created breathing studies, respiratory therapy, published many research articles, etc. that are still referenced.
He lived for 89 years and died of none lung disease. So do not
give up hope.

If all else fails, they do lungs transplants well at the Hospital of the University of Pennsylvania in Philadelphia.

Tell me more details bout your condition.

I was not very familiar with this disease so I did some research. Is the type you have cystic bronchiectasis. If it is, according to the source I used, it is the only one whose effects are irreversible.Yet it said nothing about shortening your life span that much. How long have you had the disease? Was it a result of having pneumonia or tuberculosis? According to this source there are medicines to get rid of your excess mucous and exercises you can do to help the process. I would suggest contacting the American Lung Association. I hope they are able to help

Bronchiectasis is less a disease than a component of several diseases. It just means dilated large airways (Ectatic Bronchi). I see cases of bronchiectasis in patients with various problems:
1) Cystic fibrosis - Can be diagnosed by sweat test.
2) Ciliary abnormalities - Can be diagnosed by electron microscopy of respiratory cells - or direct visualization of respiratory cells.
3) Upstream changes in small airway scarring (constrictive bronchiolitis) - Diagnosed by pulmonary function tests and lung biopsy.

We have transplanted several people with these diseases. Lung transplant is not easy, but it would allow you to see 40 in most cases.

I would start by finding out why you have bronchiectasis. Find a good pulmonologist at a large medical center that does evaluations for transplant if you think that may be required down the line.

There are various therapies you can do to keep the lungs as healthy as possible (read "The Bell Curve" by Atul Gawande online at the New Yorker's website for some info).