bronchiectasis/pseudomonas

As a result of this forum, I take turmeric (with pepper) and Manuka honey every day.  Turmeric is to reduce inflammation and Manuka Honey for it's antiboitics properites.

I also had my specialist put me on a long term low dosage antibiotic.

As a result, I am doing better this winter season than I have the past two winters.During the last winter season I had 5 bronchocopies, this season so far 0.

It's important to keep the lungs as clear as possible.

Beth

I have them to get the gunk out of my lungs.  My lungs can get so full of mucus, that I can't cough it all up, as a result, I get a lot of infections and pneumonia.

I have always been put under anesthesia, so I don't feel a thing.  The Dr puts tubes down into my lungs to suction out the mucus.  The tubes are not small enough to get into the smaller airways of the lungs, but clearing out the mucus in the wider airways allow the smaller airways to losen and clear. He also looks for anything unusual and will take a biopsy.

It's done at the hospital, as an outpatient procedure. About four hours from the time I walk ( 1 1/2 hr before for prep time) in, to the time I walk out.  The procedure it self is about a half hour long.

I live in the states, but I get the impression that in other countries, this procedure is rare.

Beth

Your new doctor should be familar with the procedure. Is he a lung specialist?

The prep is similar to a colonoscopy. An IV, to relax you just before the procedure, and an anesthesea to put you out when the doctor is ready.  Then after the procedure, they give you something, by way of the IV, to wake you up. When I have it done, they insurt the tubes down my throwt. I can not imagine being awake enough to be aware of the procedure, it would be very nerve racking and uncomfortable.

A bronchoscopy should be done as a last resort, after steriods and antibiotics don't work, or the mucus is getting too built up in the lungs.

Keep in touch, Elizabeth

Re my bronchoscopy, I guess this hospital didn't have an anesthesiologist handy or they really do not use one.  It's too bad I didn't know what it should have been like or I could have asked questions. OK so now I know.  And yes my new dr is a Pulmonologist but if I told u what goes on there it would take a whole new discussion and hours to write. (I was going to put in a 'happy face' there but honestly didn't know which one to pick.  Frustrations abound with new dr and thinking of trying to find a new Pulm.  I suppose an hours drive can't be that bad. When I had my colonoscopy about 6 mos. ago the nurse convinced me I should have an upper endoscopy and they got me mentally ready for it in the future and we booked it but then they wanted $350 so I opted out until I got my new ins. this year.  So I can have it now but I'm hesitating again.  It would be my same Gastro. dr. who I've known for yrs so I should be fine.  Does anyone else with COPD and Bronchiectasis have a feeling of your throat being a bit tighter like you might choke on a tablet? Maybe it's from coughing so much it's inflammation?  I take capsules so they go down easier but I've had three or four episodes of calcium tabs getting stuck and what a horrible feeling so that was what the endo was going to be for.   Elizabeth, thank you for your explanations that show me what to expect.  I see my Pulm. the middle of this month for a 6 mos f/u and I'll figure out then if I need to make a change.  Right now I'm doing better than the other day and I know the reason why - I ate icecream and shouldn't have done it as it clogs me so badly after with mucus but after nebulizing and stricter with the Mucinex I'm feeling much clearer now altho the feeling in the back of the throat that brings on a cough is still there.  I've also been drinking a large glass of green tea with honey right before bed and I notice that has stopped the cough at night.  Been doing that about a week but it was instant difference first night.

I have had only one colonscopy and they also put me completely under, so I didn't feel a thing.

It's strange that you were not for both procedures.

Being that you had mucus issues after eating ice cream would indicate that you can't tolerate dairy products. A lot of people find out that they have allergies to certain foods that make this illness worst.  I would like to try to cut dairy products out of my diet, to see if it would help, but I love milk, cheese, ice cream and yogert too much. 

Elizabeth

Re diet:  I've always been aware I can't have milk and icecream with asthma. Cheese hasn't bothered me that I know of or it must be much less.  I don't use milk except on oatmeal and a tiny touch in hot tea and coffee if I even drink that.  I'm wondering tho about wheat but can't avoid it.  I seldom eat bread and cereal but it's hard to cut them out. Bad chemical smells bother me from facial products and house cleaners and house smells that nobody else smells but me are a bother and I think it's just my nose that has remembered smells.  But I've tried the sinus washes and they haven't helped with that.

One thing I'd like to know maybe you or someone can help me with - does anyone take OTC sinus caps with Phenylephrine & Acetaminophen?  My prev. pulm, told me I shouldn't take anything to dry my airways or lungs so I stay away from everything except Mucinex. But I'm really suffering badly from clogginess and coughing and post nasal drip constantly - he's not here to ask about that drug and my new dr.'s girl told me it was OTC so what's the harm!!!!!

Have u ever taken anything like that? 

Elizabeth

Elizabeth,

Thank you for those ideas. Is that routine OK with the pulm. dr?  I did call my dr. to ask if I could take that OTC drug I mentioned yesterday that I guess is a nasal decongestant, but the girl didn't give it to the dr. and I never heard fm him so I'll be asking next wk.  Your decongestant doesn't dry you?  or doesn't that matter?  It's a chest decongestant or nasal? and does Benadryl dry you?  I know it's for allergies - it would make me sleep for sure.   I think the idea is that we don't want to dry the mucous with bronchiectasis because it will dry it in the pockets of the airway but I want to clarify that next wk.  If it doesn't do that then what harm can there be.

I do take Mucinex.  Not sure what it does but I've gone without it and always gotten back on it so I'm believing it's probably making the mucous less sticky and therefore easier to get up.  I was never sure the generic worked and that's what I started with but now after all these years of being on the brand name I might go back and try the generic again after all it's the same ingredient so it should do the same thing.

Do you get your saline solution at the drugstore?  For nebulizer treatment?  Does it just loosen mucous too?  it can't open the airway so do u use albuterol also at other times?

Tabatha

The saline is used to just loosen the mucus, albuterol is to help open the airways. People with cycstic fibrosis have very thick mucus, so they use saline, by way of a nebulizer as we do.

Drinking lots of water helps as well.

Elizabeth

By the way what happens when you don't use the saline or the decongestant?  Was the mucous too thick to bring up easily?  and I'm assuming the decongestant is for the chest, not nasal?

Have u tried a nasal decongestant to stop post nasal drip?  I believe that's what I need as I seem to have that issue and I want to know if anyone takes that - do Pulm doctors allow these decongestants? 

Do yourself a huge favour and cut out dairy products. You dont have to be allergic to it, they just are a terrible clogger and will greatly hamper your work of trying to rid yourself of phlem. Feeling better is more important  than any food.

I have read from several other people that have cut out dairy products.

The only thing is, that I love yogurt, cheese and ice cream.  I have subituted almond mike for cow's milk, so that's not a problem.

I'll try to not eat cheese and ice cream for a month or two, and maybe have yogurt only once in a while.

Thanks for the advice, Elizabeth

Hello Elizabeth and also Tabatha84296. 

I have been using two types of liquids in my neb. Below is how my pulmunary specialist has me taking these.  

1.   20% Acetylcysteine 3mil in neb three times daily (this is supposed to keep the mucus thinner and therefore easier to expel.

after this treatment use the acapella device (let me know if you want more info on acapella) helps getting the nasty stuff out

Wait two hours then go to next med solution

2.  7% Sodium Chloride Inhalation Soluition 3 mil 3 times daily - studies have shown this med when used us supposed to be absorbed into the lungs and has shown to help, I'm not sure about this, but do it anyway.  

Again after this treatment, acapalla device.  Acapella device after each neb treatment. 

I also have "Th Vest". It is used by CF patients and it does help by vibrating th mucus loose from the walls to expell.  I use  twice a day. You can use it while doing a neb treatment. You can researh online.  Very costly, but can get them on ebay, just make sure that it fits correctly, and you must be shown how to use by a therapist.  It wa covered by our insurance.

My complaint when first going to specialist was I feel the mucus and cough, but nothing comes up. It's like right there, but cannot cough up and out. So they could out when they did a scope that on top of having Bronchiectasis, I also had  Tracheobronchomalacia or TBM,  a condition characterized by flaccidity of the tracheal support cartilage which leads to tracheal collapse. This condition can also affect the bronchi. This makes it hard for our valves to work correctly and makes it extremly hard to cough out the mucus that needs to be gotten rid of.  

If you would like further information on how our doctors are treating these here in the US, let me know.  

Try to work out those lungs as much as possible to keep the oxygen level up.  

Take care and hope some of this helps.

Carolyn

Hi, mizsuzyq (cute name that, finally figured it out)

I am in the USA also.  I have not gone back to read what I wrote prior to this but I see you use a saline solution and I just want to know how you buy it - like is it a script or is it OTC or can I make it myself which would be easier?

I have the nasal rinses prepacked - that's not the same thing is it?

Pulmo told me to make my own but he didn't write down specifics and I'm always very careful and won't do anything until I know for sure what I'm doing re quantities etc.  

He also doesn't seem to rec anything for nebulizing other than albuterol at least in my case.

I mentioned to him how many people seem to use antibiotics for BX and he was against that too and he knows I am so there was no discussion there. I think he believes they are way overused.

I did hear years ago that there is a pharmacy in California somewhere that makes up NAC in nebulizer solution.  without looking it up I can't recall if it was  for mycobacteria, which I had at the time, or exactly what it was good for but since I'd been taking oral NAC for years I thought it sounded like something to try.  I went to my previous Pulmo with it and he poo pooed that in a minute, told me i could try whatever I wanted but he couldn't condone it and more importantly he'd never heard of it so couldn't give me a script.

So my next question is where do u get the Acetylcysteine and is it a script too?  Maybe you are getting what I heard about.  My doctors seem to not have as much on the ball as some elsewhere. Or else these other things tend to be more along the lines of 'alternative medicine' and not 'drugs'.

I can't get any response from my Acapella whatsoever.  Have tried it different ways including the way a Pulmo dr. told me and also the way a patient on this site recommended about making sure the 'feet' were always turned down even when you lie on your side.  (I think that's what she said).  But nothing works for me with that, however, nebulizing does seem to work for me altho I'm lazy and don't do it often unless I'm really clogged.  

Carolyn, I think we're all glad we don't have what you have with the trachea collapse.  That sounds like the same things that dogs get.  We look after dogs and a couple of them have had that problem and it sounds very awful to hear them choking. I think it must be terrifying for them and I hope it's different with people.  Someimes with all the gagging and coughing we do to get up the mucous that we'll do something to ourselves and damage something or get a swollen esophagus or something.  I have to say I have now had allergy shots which have helped me reduce my mucous ENORMOUSLY.  Only occasionally do I get the BX problem where the mucous picks a certain day to come up but it's not every day.  And as Christiann (below) says, the Vit. C is what keeps me from having infections.  

Anyway if u can give me the scoop on the two solutions and how you get your doctor to give it to you if it needs a script.

Thanks, Carolyn.

Tabatha

Hi Tabatha,

Both my neb med are by prescriptions only.  On the acapella device, they showed me correct way to use at National Jewish Hospital. If you have insurance and your doc can refer you to there, they can really assist in your treatments that are specific to your needs. Its about a 10 day stay and I learned a lot from them.  You need to breath in as deep as you can hold for count of 3 to 5, then exhale slowly through the device (yes with feet down). Repeat this 10 times (if you can). Then huff three times without inhaling but this cough has to be deep from inside your lungs like huffffffff........hufffffff.........hufffff. You do this in reclinging position on your back, then lay on each side do the same.  The device can rotate to make sure the feet are always turned to the floor in each of your positions. I keep one by my bed so when I have one of thos coughing fits during the night, it does help me expel it out (I only do this sitting up for the night if needed, not the daily routine.  If you go to the acapella website, there is a video that might help you.  The adult one is green and the child one is blue. 

Tabatha, not sure what part of the US you are in, but Dr. Gildea at the Cleveland Clinic in Cleveland is great. My doc sent me there, too. Dr. Gildea said my bronch was worse than the TBM, he recommended the vest. My pulm specialist helped me get that and most was covered by insurance as this is very expensive (16K for the one I have). Beth Isreal is another great hospital on the east coast, but National Jewish was closer to where I lived. My doctor has me always have a supply of meds to use when I have a flare up.  These are levequin and biaxan. I do not take together because it can change the heart rate if taken together, so I take one for three weeks and follow it with the other for the next three weeks.  I did work full time and found that I was constantly tired, which didn't help with the lung situation. Now that I am retired, I can rest more and it has helped me because I am not so tired all the time.  One does tend to get tired of this regiment, but I have not been in the hospital (yet). I have had flare ups with the Pseudomonas Aeruginosa, but get better with the meds. Also with your acapella, it needs to be washed in sudsy water by submering it, like in a pitcher.  Rinse real well and stand it up on end on terry cloth so it can drain. This is why I have more than one so two are always clean and ready to use.

I do not take the prescribed meds unless i absolutely need them, because all the doctors I have seen said not to take unless needed otherwise the bacteria can get resistant to the meds and then off to hospital for IV's. 

I might add that at National Jewish, I was told that predisone does not help and to not use it anymore. But this was for me, I'm not saying it's not helpful for others.  I have been scoped numerous times thoughout the years, but it's been a couple years since my last one. My doc has talked to me about maybe getting scoped like dregging a canal to keep it clear, but I've been doing really good with it myself and he agrees, so haven't had to be done for awhile now.  Also, to help with my coughing I get tussionex cough syrup. This is a really strong medicine and you should only take one teaspoon or less every 12 or more hours. I usually use it for night time when I really really need help in resting. It will not stop the cough, it helps in calming my cough from being so hard that it hurts, which damages the TBM issue more. So cough lightly (which they taught me at National Jewish on correct way to help me cough).  Also the cough syrup is very expensive here in the states and it controlled by DEA so it's pretty hard to get nowadays. 

I do hope some of what I do for myself might be of help to you and others. From trial and error and sharing what helps one just might help others.  

Take care,

Carolyn    

Hi, Carolyn,

Thank you for your nice long descriptions of everything and I guess I'm really just replying in agreement with everything you say. 

I have had the Acapella for years and I appreciate you telling me what you learned.  The Dr. who taught me how to use it had been with National Jewish and the Health Dept. had referred me to him as a specialist in Mycobacteria so I went to him at Shands in Florida.  He is no longer there but I'd stopped going to him because he didn't really see a big problem I think.  He kept asking me how much sputum I brought up and was it a cup a day and I said WHAAAT?  A cup a day?  No I didn't have that much (he is the one who loved sputum - he held no regard for CT scans whatsover, which surprised me as I thought they'd tell you more and sputum can have bacteria that comes from different places in the lungs and may not show up when you want it to.  But I was always very embarrassed about coughing for him and showing him the results so he made a big point of saying HE LOVED SPUTUM and his assistant would agree that he did.  Anyway I went for a couple of follow ups with him but I was clear with my sputum tests too.  No Mycobacteria had shown up (after my Vitamin C IVs) and if there was pseudomonas he didn't mention it; I think it would have been on the test results but it was not.  He said as far as the Acapella goes just every day blow into it gently 10 times and he had me do it so he could see.  That was it.   But I will try your way.  I think I don't use it because I often don't feel like there is much to bring up and when I'm bad I use the nebulizer with albuterol and shortly after that I can cough up what needs to come up. But next time I'll try your instructions and see what results I get.

I already feel like I'm doing so much during my day that anything more gets forgotten.  Like a certain time I have to inhale the spiriva and then another certain time I have to do Symbicort and musn't forget the Levothyroxine when I wake up and remember not to take my calcium within 4 hrs of that and remember to TAKE the calcium next time I eat after that 4 hrs (that 4-hr thing really never works) then mix up the Vit. C and then remember to eat sometime later IF I'm even hungry after drinking the Vit. C drink and that's 2-3 glasses a day and more supplements and don't forget the Symbicort again and even though I know many of you do the same thing, this schedule almost keeps me from going anywhere oh and then Singulair before bed and nebulize if I need to AND then go to the sink and wash out all the neb. pieces (I wash them all) and I remember when we were 10 we could just jump out of bed and go.  What have we done to ourselves over the years.

You are obviously worse than I am as I've not had to have antibiotics in many years for COPD or BX.  Levaquin I'm allergic to as the first time I had it I was OK but the 2nd occasion I had it my face swelled up.  I used to take Cipro but it didn't do anything for my bronchitis after a week it always came back.  I'm wondering now since I have not been on antibiotics for years, if all those occasions they put me on Cipro if my system had just become immune to it and I thought I was needing antibiotic every time.  Apparently I DID NOT need it and the proof is all these years not feeling like I need it.  If I knew then what I know now I would have shot out the door and run as fast as I could to the allergist and got some allergy shots because I recall being so phlegmy and gaggy and choking on the stuff and I guess I called the dr. and all he knew was antibiotics.  I've learned since and you mention it here that we can be 'cleaned out' in a bronchoscopy.  I think that's what you meant when you said 'scoped'.  I had a friend tell me her husband went to the hospital and they cleaned out his lungs.  I had no idea what she was talking about and she couldn't tell me anything more but thru this site I learned that drs. do just that if needed.  Well back then I might have needed it but I no longer feel all that choking like my lungs must be swimming in mucous.  Half of it was probably caused by allergies (oak trees, dust mites, bayberry, several molds & more).

Like you I have not been in the hosp. for COPD or BX etc. - only for pneumonia and now I have to be very alert for that happening again because I can feel how easy it would be to not recover from that one day.  I take extra C in the winter IF I'm going to be around people or in stores and sometimes even restaurants. I never know who has touched what, nor what I'll touch.

Oh, about National Jewish, I do know of that hospital and their 10 day regimen.  I got their name from the president of the support group I was going to for Non-tuberculosis Mycobacteria several years ago.  Like you, she had been there and she wrote me a very lengthy description of her 10 days there.  I think at the time I was considering going there because I thought I was really ill but the IVs of Vit C I was doing at the time cured me of that bacteria.  i stopped the support group but kept her paper just in case one day I might need it.  I'd talked about the idea of going there with my husband since, for this BX problem but now I've had the allergy shots I seem to be doing better so I'm waiting to see how it goes.  I'm coughing now but it's a dry cough; it's very irritating but I try to drink more water when that happens and different teas.  I found a nice raspberry tea which is strong and also the ginger tea occasionally I drink that but have ginger every day in my juicer.  Oh, I'm coughing because I'm late with my Symbicort.  Aha!   See??  Timing is everything.

I did have some Prednisone 10mg for 10 days last year but no antibiotic with it and it didn't do a thing.  Didn't even help my arthritis.  Normally a steroid would stop all pain.  I'd had pneumonia and antibiotic for it but the doctor failed to give the pharmacy the dosage for the Prednisone so I ended up taking them 2 mos. apart and that may have been the reason the Pred. didn't work.  It was meant to help the awful cough I had with the pneumonia (like you say, you cough so hard it really hurts).  I ended up just giving myself cough medicine.  I did have some Tussionex left over and as you say it is wonderful.  One day was all I needed and then cough drops after that.  They are so full of sugar that keeping them in your mouth over night is not good at all but that's what I did for several night so I could sleep.

Thank you again, Carolyn, for your wonderful response and ideas and it sure does help to read more lengthy replies from people so we understand really what they also go thru and exactly how they handle it.

Tabatha

Tabatha, sounds like you are on track that helps you.  

All of us should go to a salt mine for about a year and sit there daily for about 10 hours. HAHA.  I say that because there was a dr that wrote a report of people in a different country that worked in thes salt mines and they had less lung problems or issues than those who didn't.  Makes since why they give me the saline solution for my neb.  Keep in touch and do let me know how you are doing.  

Carolyn