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Living With Bronchiectasis

I was diagnosed with bronchiectasis in 2006.  My illness started in 2001 when I was working in a school with mold.  I developed pneumonia 3 times, had an ongoing sinus infection, and mold cultured my lungs.  In the next year I changed to a different school.  Unfortunately, this school also had mold.  I continued to be sick with sinus infections and bouts of pneumonia.  I kept thinking I would finally get better when I moved to a new school the next year. At that time I was diagnosed with breast cancer.  My energy was spent fighting that along with repeated bronchitis and sinusitis.  Luckily, the breast cancer is still in remission.

In the next few years I kept taking rounds of antibiotics even to the point of having 6 weeks of IV's.  Nothing stopped the infections.  In fact I now had a very resistant bacteria going on in my lungs and sinuses.  I switched to natural remedies since traditional medicine was no longer working for me. This helped me finally get rid of the drug resistant infection.  It took a year and a half.

When I was diagnosed, it felt like a death sentence until I became used to it.  After all, I was already used to being always sick.  Did it matter that it now had a name?  I am still me.  Life is not predictable.  Each day is all that matters.  None of us know how many days we have left.

I now spend my time trying to stay healthy.  I am following a healthy diet, trying to work out when I am not sick, and taking many vitamins and supplements in order to stay healthy.  I also really try to enjoy my family and make plenty of time to be with them.

I would love to hear from more people like me.  So far I have met noone with this disease.  It is found more in third world countries.

Swede 1

swede1 swede1 56-60 21 Responses Apr 18, 2010

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Good evening swede1, just read your letter and I to have been diagnosed with Bronchiectasis recently (last 6 months) It would be great to exchange info regarding diet, exercise, supplements etc etc.

Up until 3 years ago I was still very active, but found it very difficult to keep going (lack of stamina) hence the Doctors sending me to a specialist after several visits and a change of Doctor.

Looking forward to hearing from you.

James.

I have bronchiectasis ... Was diagnosed 3 yrs ago. I didn't realize at the time I got the diagnosis that there was no cure. I spent the majority of last winter fighting numerous infections.
I have had similar situations being around mold.

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Hi, it's nice to finally take that step to reach out and find other people with bronchiectasis. I also apparently am diagnosed with BOOP and asthma, and have suffered from this since I was 3 and hospitalized. I've grown up always thinking that once I hit college, it would all be normal again, but I'm a junior studying in NJ and it's hit me how depressed I am about that it may not get better, but worse, so I am really researching for anything that can help me improve. My average numbers is at 54%, when I am sick it decreases to a low 40% and at my best, it has been 69% before. It's constantly a struggle and limits a lot of things in life, so I am also looking into stem cell therapy- also read that Ayurvedic treatment is effective? I also recently started taking the supplement Serrapeptase.

Hi Swede, You're definitely not alone. I've had bronchiectasis for 20 years and recently met 3 other people with the condition. Mine seemed to be manageable until this past year when I was hospitalized for the 4th time since 2002
- this time with virulent pseudomonas pneumonia; then had a "run-in" with an industrial-strength chemical. Since then my deep phlegm has been deep pink and the MD said it looks like I have MAC (colonies growing in lungs) & will probably have to go on 3 antibiotic cocktail for 18 months. Can't even imagine that, so am reaching out in every direction seeking one of those miracle integrative MDs or genius naturopaths or some other alternative practitioner like the ones curing people of cancer on "The Incurables" segment on the Veria Living TV channel. I've had cancer in the past & I think that would be easier to cure alternatively than bronchiectasis. So I've survived ovarian cancer & childhood TB & now I'm determined to try and survive what I'm going thru now when I'm homebound (in wintry NYC) & for the 1st time the fatigue is making it totally impossible to exercise. Do any of you have any recommendations for people I could contact who might
know of one of those alternative or integrative geniuses who can help me get a leg up with my condition? I'd be satisfied to be where I was at this time last year. May you all somehow be well! Oh & yes I too would like to know about the natural treatment that apparently helped one of you. Thanks!

Hello Swede, you are not alone in this condition. I also suffer from it. Know that I know how you feel. for I have experienced a lot of the same things that you have. and still do . thanks for sharing your story. It was helpful to me

Please tell me about the natural treatment that helped you

Hi Swede1. I hope I find my way back on to this site. Your mold problem has my attention. I have had 20 sinus operation most of them at the Mayo clinic. As a child I would get lots of lung infections. After around 10 abscess sinus infections my Mayo ENT put me on long term daily antibiotic therapy. My life changed after that, I started to live again. It was funny because I could feel infections coming on before my sinus doctor saw anything. Looking back they now think that it was a lung infection that first made me feel bad.

In November of 2009 after I had my 17th sinus operation my new ENT at Mayo told me I was fixed and no longer needed antibiotics. I am a lead estimator for a large electrical contractor. In January of 2010 while working on an estimate for the DC Metro I had to do night walks through the DC subway. It was full of mold. One month later I had pneumonia. From 2010 to March of 2012 I had pneumonia a dozen times, with 10 hospitalizations. In March of 2012 I had a radical sinus operation which helped. Also since September of 2011 I rotate between Cayston (aztronam) and Tobi, both inhaled antibiotics. Before that I had all IV antibiotics seeing that in 2010 the pseudonymous became resistant to oral antibiotics. I ended up 4 PIC line infections so they had to try something else. I also have had Parkinson's for 12 years.

But don't give up. I get up and work out for 75 minutes every morning. I stretch, lift weights and rotate between a treadmill and a sit down elliptical machine. From March of 2011 to March of 2012 I spent 2 months in the hospital between 8 different times. I never gave up, I knew they would get it under control. I don't fool myself, I know that I will go through rough patches again. I will deal with them when it happens. But believe me, I run from mold.

I hope my story has helped.

Stay Strong

Oh my God Slange (Stay Strong?). To read that you've been through SO MUCH but can now leave your home each day, go to a gym and work out for 75 minutes each owning! You've given me hope, bless you! But I'd still love to hear from any of you about natural treatments.

Hi! I'm a 65 year old female and have had no lung, pulmonary problems until 1 1/2 years ago. I had Bronchitis off and on, was in Urgent Care many times, missed work, felt lousy. I coughed very hard most of the time, was fatigued and always felt better after a round of Antibiotics and the dreaded Prednisone. However, 6 months go, I couldn't rebound so I went to a pulmonary specialist and after doing a lung biopsy and ct scans, I was diagnosed with Bronchiectasis. I now am on antibiotics for 2 weeks and then switch to a different one for 2 weeks. I also use inhalers. So far, this has worked well but I must say, I'm very, very worried about my prognosis, my future health. I would be interested in natural treatments because I'm sure that eventually, the antibiotics won't work anymore. I would love to hear from others regarding this. Thank you!

I might add that my knee caps and my hands have turned bluish. Has anyone else had that symptom? I just called my pulmonary specialist to see if we need to go to another treatment level...

I also was diagnosed with bronchiectasis with associated pseudomonas which is chronic, more than 20 years ago. My pulmonologist at USF medical center in Tampa, Fl has kept me relatively well if I am diligent with meds and airway clearance.

Malibu. Yes I am still active just don't login a lot.

I am 53. I was diagnosed of broncieactasis for 16 yrs now but i think I have it a long time ago. I live in 3rd world country. I now have developed fibrosis. My doctor said maybe I had it because I suffered fron PTB when I was younger and was not treated well. I am always on antibiotics because pnuemonia or bronchitis always sets in. I never had any problem with antibiotics before but lately I developed allergies to it. I am very afraid, what if antibiotics doesnt work anymore?????I tried a lot of vitamins and food supplements just to get me going. I prayed a lot that each day God will strenghten me. I newly open this site and glad Im not alone.

Hi,<br />
<br />
I changed my name to Swede 1 because I couldn't remember my password to get into the site and wanted to talk with some to the people who had made comments. Sadly, the school that I am in now has mold like my old school so the teachers have taken pictures and have been proactive to try to get the district to fix it. Funds are tight in our district because of the economy. However, if I can keep anyone else from developing this disease I will do whatever it takes to get the building fixed. My room was supposedly worked on today to remove the bookcase that is attached to the wall. The leaks have gone on for years and have not been fixed despite constant reports from all of us. They think my bookcase like several other teachers has mold behind it. If so they will clean the area up and remove the bookcase. I have also asked for an air quality report in the rooms affected. Wish me luck. Swede 1 now 2

my 14yr old son has just been diagnosed, hes on constant antibiotics steroid inhalers and ventolin and briconal inhalers, he starts physio next week and has this condition in both lungs....hes ok with all thats going on and carrys on with normal day to day life, hes very active with sports so this helps....its me thats not coping with it all, every on thinks just because he looks normal thats nothings wrong and telling me to get on with it....well i think its serious, wht do i need to get support, do i need him to fall really ill.....im so stressed and no one seems to care

I am glad that your son is active. That will help his lungs. I have lost 25% lung function but my lungs are better than most people with this since I used to run 10 miles a day. Exercise gets that mucous up and out of your chest. It is so much harder to watch our children suffer than suffer ourselves. It is a manageable disease. It just takes a lot of work and being proactive when you feel an infection taking hold of your body. Good luck.

You are right. Exercise helps and one can 'feel' an infection coming on. I use inhaled TOBI bid, 4 weeks on &amp; 2 weeks off to control pseudomonas that is persistent. Also, inhaled sterile saline is very helpful.

Dear author and chell721,<br />
<br />
i'm deeply sorry for your disease. I know life can be out of the ordinary with this. I'm 24, I've been coughing sputum since childhood and recently and I was coughing up blood in sputum, I found out I have Bronchiectasis. Lately i'm coughing blood alot as i'm in Dubai(sand storms are frrquent). Dear all, I'm worried i have to live with this all my life. Please tell me how is your experience and how are you coping with it, specially when you go to work?

I use the Hill/rom vest. I also joined the bronchiectasis 1 site where many people have had this for awhile. Some have had it 43 years. I use a flovent and mucinex. I also see a chiropractor who beats my back and have frequent massages which helps. Sadly, it is a life-long disease. You can live with it and keep it from prgressing by constantly monitoring yourself. Exercise does help. Can you wear a mask to protect against the dust storms? Also use a netti pot to clean out your nose from the dust. Many of us have coughed up blood. I would see my doctor if it keeps happening. Good luck.

I also have a vest. Postural drainage in very helpful as well.

Hello Swede 2. Can you tell me more about the Hill/rom vest? I just today became a member here. I need to know how to join this group. How does the vest work for you and where do you purchase it? I have bronchiectasis and would like to find a way to help my lungs. The heaviness I have at the bottom of my lungs is so uncomfortable. I\'ve never smoked but this came upon me in April of 2008 when I experienced shortness of breath and sharp pain in my lung. I look forward to sharing post with you and others in this group. Thank you.

hi . my name is ridwaan . i do not have bronchiectasis but my seven year daughter has. she has been diagnosed about 5 ago . that is when she was about 2 years. in her case she developed this illness due to a complication of open heart surgey. when she was 9 months it was diagnosed that she had a vsd and a coarction of the aorta. these were operated on and were repaired. months later she had this constant cough and would always choke after drinking fluids . when this was initially investigated it was treated as pneumonia. the pneumonia was not responding to iv antibiotics. a ct scan of the chest showed a collapsed lung. she was referred back to the hospital were the heart surgery was performed. she was put on strong iv antibiotics and taken to theatre for broncoscopy. the surgeons were suprised that there was pus on the lung, which was washed out. after being in hospital for one month of antibiotcs and having to go to theatre every 4 days to wash out her lung, the doctors were afraid the infection would spread to her right lung , so the decision was made to remove her left lung , which was done successfully. this we had accepted together with the open heart surgery 9 months. but what we could not understand was why was this happenning. our answer arrived when her ent decided to remove her tonsills, when he visualised the vocal cords and noticed that the left was paralazied. now everything fell in to place. during the heart surgery she could have had an injury to her recurrent laryngeal nerve, the nerve which makes the vocal cord do its job. so if the left vocal cord was not working she could not protect her airway meaning water or food could find its way into her lung and not stomach. that would also have explained her soft voice. not a year goes by without her having been admitted twice a year for iv antibiotics which needs to be for 14 - 21 days. in june 2010 it was decided that she have an operation on her vocal cord , which would be to medialize it and inject some fat into it. the thinking was that it would protect her airway and make her speech stronger as wall as her cough so she can get those bugs out off her lung. so it was done. june 2011 and we r back in hospital . the infection has since last year spread to her right lung and it seems that she has bronchiectasis in her right lung. earlier this year it was discovered that she had hearing loss probably from all the strong antibiotics, so she needs hearing aids. at the age of 7 she has a cardiologist, pulmonologist, ent surgeon, speech therapists, physiotherapist, several paedriatcians and general doctors. despite all this she is a bright kid who is performing well at school, she is just trying her best, we as parents are also trying our best. we pray to the lord to help our child to be as healthy as possible. some days r fine some r not . we just dont know what to expect the future to hold for her. should we dream about her one day graduating from school or colleague, or even dream of her someday gettimg married? if theres anyone out there with a similar medical history, please contact us cos we really need some reason to believe.

I am so sorry that your daughter and your family has suffered so much. I am also on the bronchiectasis 1 site and there are people there who have had the disease since they were quite young. There are also several parents of children on the site. Yes, I have heard that some of the mycin antibiotics can cause hearing loss. Your daughter has been through so much. I pray things will be better for her as time goes on and she will get healthier. Last year I had a student who was in 5th grade with this disease. He had had it from an early age. He has been healthier the last 3 years. He is treated by his doctors as if he has cystic fibrosis. There is actually a medicine now that can reduce the mucus production. I use the Hill/Rom vest and a flovent to expel mucous daily. I also use mucinex and many vitamin supplements. I am better when I can walk and work out. Good luck to your daughter and your family.

Please direct me to the bronchiectasis 1 site. It is good to hear from others experiencing this and winning tis daily battle.

wow How did I happen across this site. I am glad I did<br />
Pampoo and Chell, yes I relate to all that<br />
Would love to hear from you both<br />
Happy

I have it as well. Was diagnosed in 2008. It is a very frustating disease. I spent a entire year at Emory and along with a open chest lung surgery for them to throw their hands in the air and say lets watch you for a year and see what happens. I then went to the Mayo clinic where I was diagnosed. I am on a daily inhaler and have my emergency inhalers at all times. Unfortunately I did not get diagnosed till it was of obvious affects. I have never smoked or been around smoke. I have pnumonia for 3 months and could not shake it. Thats when the doctors got concerned. They believe mine is from chronic bronchitis. I now have 51% lung function. I know what you mean by death sentence. Exercise, while important, sometimes feels like it will kill you. The part I find most difficult is when I am out of breath from just going to the grocery store, or talking on the phone. People look at you like your out of shape or crazy. Just because a disease is not "visable" doesnt mean it doesnt exist. I have had my share of why me. I was 36 when I was diagnosed. The youngest in Emorys pulmonary dept and you walk in to a room full of older people with oxygen wondering when that will be you. Years from now or in 6 months. You just dont know. On the bright side, it has been a blessing that I now know life is too short to be unhappy and I have made changes in my life to be just that. Feels good speaking to someone who might understand.

I am so sorry your started this journey at such a young age. Many of the people on the bronchiectasis 1 site have had it for many years. Last year I had a student who was ten who had had it since he was 3. He gets very good treatment and plays hockey but is still vunerable to diseases. Although the last 2 years he has been very healthy.

Chell721... Are u still active on this site...?

Hi Chell, this is my first time on this site and I hope that I can find my way back. I just responded to a swete1 note with my whole story. Your's caught my eye because for one thing I go to Mayo. I was diagnosed with Bronchiectasis in February of 2010. However I was 36 when I first started going to Mayo. I had my 5th sinus surgery and my first abscess sinus infection where I was in the hospital for 6 weeks and had 3 surgeries. So I know what it's like to be young and thrown into so much. Now I'm 59 and I have had pneumonia a dozen times since February of 2010. However the past year has been good. I never gave up, I knew that Mayo would get it under control. After being in the hospital 8 times in a one year period, March 2011 through March 2012 things are better. I take Cayston (aztreonam) for 28 days then I rotate to Tobi for 28 days. Both are inhaled. For two years I was on IV antibiotics almost every three months, with 5 PIC line infections. I have also had Parkinson's for the past 12 years.

But I never give up. I work out every morning. I know what it's like to be out of breath after one flight of stairs. I can walk for miles. I just breath hard. lol I have always kept up an exercise program. My doctors tell me that's what's going to keep me alive. I tell people when I breath hard that I have bad lungs, but strong lungs.

So keep up the good attitude and live strong. We might out live everyone because we have to take care of ourselves.

I have seen that an Ayurvedic approach to health might be a positive way to go. I think that it is basically Yoga + a vegetarian diet. However, I am just starting to investigate it. I may try it. I will go to an introductory meeting, and then I will let you know what I think.<br />
<br />
Now in addition to bronchiectasis/pseudomonas, my doctor thinks that I have Common Variable Immune Deficiency. Like you said, a name means nothing. It is about you you feel. I have contacted a wonderful allergist/immunologist at UCI, and the doctor spent an hour with me. I am very hopeful that some type of health assistance will be available to me through UC Irvine, California.

I was check for the immune defieciency but I was fine. I now have a Hill/Rom vest which really helps. I think you sound like you are on a good tract with the Yoga. I can't have gluten as it seems to cause me to have more mucous. Also exercise does help both walking and with weights. I joined another group called Bronchiectasis 1 and they have much information on the topic there. I have learned so much. I love your dogs.

Dear Swede1,<br />
<br />
I, too, would like to know the natural remedies that you switched to!!! <br />
<br />
Pampooh

What natural remedies did you switch to?

I haven't been on this site for awhile. I joined another group called Bronchiectasis1 and have been gathering much information on this disease. I now have a Hill-Rom vest which helps move the mucous out of my lungs. I take many supplements to try to prevent infection. I went to a good health food store and asked for recommendations. Eating food with gluten seems to increase the mucous so I stay away from that. I am also trying to exercise more.