Bronchietasis and me!

Chest and lungs
1

Hello everybody.

Only joined today and im keen to be part of something rather than an isolated case.

I am an asthma sufferer and diagnosed with dreaded bronchietasis 6 months ago.

Im 56 and other than that in reasonably good health.

I guess my gripe with the bronch thing is im looking for something or someone to blame as ive never smoked or indulged in drugs, so yeah am bitter!!

And one more thing, i am flabbergasted that medical advances seemed to have side stepped this condition and all we get is mucus clearing techniques.

Anyway rant over.

How is everyone on here

Jem

2

Hi Jem,

I certainly felt hard done by when I was diagnosed out of the blue too. Like you I never did anything to warrant the condition, eg smoking etc but did have whooping cough and pneumonia as a child which seems to be the culprit for the damage in the lungs. I too have had asthma since a child.  

I noticed that I was often unable to walk up hills (2016) so later that year started the testing and so the diagnosis. 

I'm told by the respiratory nurse that 70% of people cough and 30% don't...I'm a 'don't'. 

I cope mostly until I have a 'flare up'...the last one lasted 3 months and I'm still suffering quite a lot of fatigue. I seem to get a flare up even though I don't get a cough or cold so I sort of live in dread of coming into contact with a bacteria type thing that heads straight to my lungs and makes me so poorly. 

I'm fortunate to have a really good respiratory consultant who has been a great support but you're right, apart from ABs & steroids there doesn't seem anything extra out there to improve our condition.   

My husband is very supportive but still in denial that this is a condition that's not going away...that's hard for me! He's 7 yrs older than me and he worries about the level of care I may need one day....

You're certainly not alone and this is a good place to share how we're feeling and get support. I have learned a lot here about different treatments that others have been given. 

Janet 

3

Hi Jem. It s frustrating when you realise that the condition has always been a "poor relation" to other types of lung disease. Things are changing now. There is more research for bronchiectasis. I always bang on about stem cell research- but I am always a little more hopeful when I read about it,- as the results are positive. Look up stem call research in China which has  the latest and most positive outcome.

4

Thanks for that Janet.

Yeah the partner thing is particularly annoying they dont seem to appreciate how hard it is struggle to breathe doing simple things and then wonder why we get down about it.

Ye i have lung damage from childhood illnesses. My mum and father were heavy smokers in my presence. Am guessing that hasnt help me either.

5

Ye stem cell seems to pop its head up a lot dont it?

6

Hi jem ,I was very similar to you when I had bronchietasis,you feel very low and you keep asking why me ,you have come to the right place you will get the best advice on here and we all know what you are going through ,I have has asthma has a child too I think most of the damage was done then,all my life have had infections and breathing problems and coped the best way I could .it was three years I was told I have bx I’m  46 now ,I was fit and never smoked ,I take each day at a time and you will have ups and downs ,it’s hard to always be positive all the time but remember your not alone ,take care and keep well

Joanne 

7

I had the parents smoking around me too. In fact my mum died of emphysema aged 76. My father buzzed off when I was 4, so at least that cut the smoking in the house down....  

8

Cheers jockey

9

Bronchiectasis is not smoking-dependent, else 75% of COPD sufferers would get it. As it is, 25% of COPD folks never smoked nor smoked 2d hand.

10

Jem,

Welcome to this forum! You will receive many tips on how to manage Bx. And you will not feel so alone.

I'm 68 and have had breathing/coughing issues for 30 yrs. Was first diagnosed with allergies, then asthma, then COPD and then about 7yrs ago, by way of a CT scan Bronchiectasis. My specialist, who was not familiar with Bx, referred me to the Mayo Clinic.

It's my understanding, by the Mayo doctor, that Bx is due to childhood illnesses, such as measles, mumps, and worst, whooping cough. They, along with pneumonias, causes damage and weakening of the airways (the weakening of the airways causes Bx which is different from asthma and copd) . 

Some people have a mild form of Bx, but don't know it thru out their lives. Some have problems at an early age and some, like me, starts at middle age.

I think, that since Bx has been mis-diagnosed, it hasn't been brought to the attention of the medical world.

I believe that certain events in a person's life can set off the onset of Bx.

In my early 20's, I worked in a sewing factory, breathing in fabric fibers. In my late 30's we had a house built. Two years later, I started having breathing/coughing issues. I have always wondered, were there certain chemicals in the building materials? I started have sinus issues with my first pregnancy. 

You should have your specialist refer you to pulmonary therapy. There you will learn: breathing techniques, how to posture to have gravity help cough up the mucus, how to exercise to keep the lungs open, etc.

Also, be proactive. Eat healthy, exercise (if you can) even if it's just walking around the house. Try different diets (such as; limit dairy products or grains).  Try essential oils, certain vitamins, minerals. (I take turmeric/with pepper very day for the anti-inflammatory properties).  Stay away for sick people.

Keep in touch, and this is a good place to vent, Beth

 

11

Thank you elizabeth

12

Hello again Beth. How are you doing? Hope all is well following the stem cell treatment. please keep us informed. Best wishes Sue.

 

13

Sue,

It has been over two years since I've had the treatment. 

This past year, I have felt better than I have in years and for the longest time. I see my specialist every 3 months, and he said my numbers keep improving.

I can't say for sure if it's due to the treatment. Three years ago, I retired from a stressful job (but I loved my job, and at times, it came before my health).  Two years ago, we moved to a different area of the US which the air quality is much better (moved closer to children and grandkids).  Also, over two years ago, I came across this forum and learned a lot about being proactive and to question my specialist. 

It's been close to three years since I've had pneumonia, ER visits, hospital stays or a bronchoscopy. The two years prior I had 4-5 bronchoscopies per year. 

If anyone was to ask me if they should have the treatment, I would have to answer: If you can spare the $10,000, do it.

Beth

14

If you don't mind sharing, where did you have it done and where did you move that the air's better? I'm hoping you don't say Colorado, lol. I'm in Central Tx.

If you don't want to share here but would via PM, That's okay, too.

15

I had it done at The Lung Institute in Nashville, TN. They do have a clinic in Arizona, Florida and several other sites in the US.

They do have a website and you can get a lot of information there. You can even sign up for a free webinar (I did) to learn more about the process.

We lived in Northern Indiana, near South Bend. The county that we lived in (Elkhart) is the RV manufacturing capital, so a lot of factories polluting the air. We moved to Des Moines, Iowa two years ago.

Also, in Indiana, we lived in an house that was built in the 70s on a lot with a lot of trees for 12 years. The house was very well built, but I wonder if over the years, mold, due to the shade, was somewhere in the house.  We now just moved, here in Iowa, into a new house with very few trees around.

Beth