Re: Newly diagnosed

[Guest guest]

Hi I too joined recently but have not had much input. I was diagnosed pretty much with the same conditions as you describe but a bit worse - about 20% over both lungs I think. That was approx 4 years ago and I am 52 now. I find that if I do the breathing exercises and try and keep infection free I cope OK most of the time. I also take decongestant (sudafed) and an antihistamine (Benadryl) both those help but I still have the nasal drip that seems to be part of this. I take codeine for my back and that is ace at stopping the coughing - I didn't know it was a cough suppressant until recently, but of course it has other unpleasant side effects and I don't recommend the codeine laxative route to stop the cough on a long term basis. I have tried not to let Bronchie affect my life too much but inevitably it does, especially the fatigue. I do technique and find that really helps me in all sorts of ways. I also use a flutter device from time to time to remove gunk as I am not good at doing the percussion physio and the Active cycle of breathing techniques with it. I have a very bad back and find it is sometimes too physical. However I am determined to do everything I can to stop this disease progressing and that means keeping reasonably fit, clearing the chest and keeping as infection free as poss.

I must say I was scared at reading some of the things on the forum - I have never heard of most of the devices and things that they do. All this saline and nebulisers - I can only conclude that those poor people must be much worse off then me.I hope I never get that bad it sounds really dreadful. There is another group that I look at regularly (BRUS) but have not joined and it does seem less scary. have a look at http://www.bronchiectasis.info/default.asp

Good luck & keep well.

Liz

RE: travelling with bronchiectasis

Janice, am hoping you rec’d responses by now. I was away on a cruise around the Mediterranean Sea and ended up in morocco for a few days. I took my nebulizer and needed it. Do you know if the electricity is comparable to ours? I was on a ship so it was ok, but in Spain, staying on land, it was not. The restaurants allow smoking so be careful. I don’t feel my rescue inhaler is anywhere as effective as my nebulizer, but maybe the boys are different. I didn’t think the temperature changes affected me at all.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of janice.djelloulSent: Tuesday, October 21, 2008 6:23 PMTo: bronchiectasis Subject: travelling with bronchiectasis

Hoping for more advice please! we're planning to travel to North africa next month to visit family in a rural area. There are private hospitals which are better than the share-a-bed, bring your own medicine type local hospital, but I am worried about the 9yr old twins' bronchiectasis, especially because of the range of temperatures they'll meet in a day. Should i take a nebulizer with us? How does that work differently to the inhalers? or will lots of their inhalers be enough? Obviously I'll be taking antibiotics to be made up if necessary, but is there anything else i should be aware of? i know a friend went to another part of N.africa and the private hospital had oxygen tanks but they had run out of oxygen! Hopefully all will be well, but need others' advice just to be on the safe side please!

[Guest guest]

, I was the one who discussed going

to N. Africa in the last memo. You have come

to the right site. Since I am fairly new to it (maybe 1 year) I am sure you

will get great advice from the others. Joan from Melbourne, Florida.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of sarahjackson100@...

Sent: Monday, November 03, 2008

5:36 AM

To: bronchiectasis

Subject: Newly

diagnosed

Hi

everyone. I joined this forum recently but haven't asked anything to date. I

was diagnosd with 5% bronchiectasis damage to my lungs earlier this summer. I

was relieved to find out what my symptoms of 10yrs pertained to - regular

fatigue (sometimes overwhelming and requiring ridiculous amounts of sleep to

combat) a persistent cough (with v small amt of daily extractions) and 1 or 2

nasty annual viruses, chest/lung infections that last usually for 4 wks,

sumtimes longer. Xmas before last I was unwell for over 2 mths. I have an

active job (my own biz) as an entertainer and am not able financially to slow

that down (am single!) - altho I luv my work with a passion I am in middle of

horrid infection now and find tht evry time I work it sets me back. My consultant

says my job is unusual and maybe I will need to slow down I am currently

starting a new biz tht will require less leaping around, but tht will take time

to build!

Ok. This forum. The letters between u guys have scared me! I didn't realise

that bronchiectasis could be so severe. Am sorry to hear there r people

suffering so much out there and glad u support each otha with advice. Mine is

mild but the infections I get tend 2 b very debilitating. Social life stops and

its just work and rest and no fun for weeks on end. Frustrating! I don't know

anyone with this condition so I came here to share my story (sorry if its taken

too long or seems rather mild in comparison to you guys) ... But I wld also

like to ask a couple of questions:

Firstly, I've been told to get fit (20 mins out of breath exercise minimum a

day) which I've been trying to get in2 and haven't accomplished yet, but am

along th right tracks (re-jigging my mind-set!) I have also been told tht if I

keep getting infections my condition cld worsen.

Du know of mild cases whre getting fit and clearing th lungs daily (that

usually does it for me) helps to prevent going down with the viruses that often

develop in us in2 infections?

And secondly, du know of sufferers who have had their lungs worsen bcos of

repeated infections ova th years and how bad can they get from just those?

Am feeling a bit worried at th moment as th hospital cldnt give me answers to

these questions. I'm 45 and feel there's plenty of time for degeneration and

seriously wish to avoid it as this is hard enuff to deal with!!

I send out my best wishes to those who r much worse off than me.

Thank u so much to any1 who takes th time to read this and respond.

Sent from

my BlackBerry® wireless device

From: " joan lund "

<queenmum32909cfl (DOT) rr.com>

Date: Sun, 2 Nov 2008 18:45:00

-0500

To: <bronchiectasis >

Subject: RE:

travelling with bronchiectasis

Janice, am hoping you rec’d responses by now. I was away on a

cruise around the Mediterranean Sea

and ended up in morocco for a few days. I took my nebulizer and needed

it. Do you know if the electricity is comparable to ours? I was on

a ship so it was ok, but in Spain, staying on land,

it was not. The restaurants allow smoking so be careful. I don’t

feel my rescue inhaler is anywhere as effective as my nebulizer, but maybe the

boys are different. I didn’t think the temperature changes affected me at

all.

From: bronchiectasis

[mailto:bronchiectasis ]

On Behalf Of janice.djelloul

Sent: Tuesday, October 21, 2008

6:23 PM

To: bronchiectasis

Subject:

travelling with bronchiectasis

Hoping

for more advice please! we're planning to travel to North

africa

next month to visit family in a rural area. There are private hospitals

which are better than the share-a-bed, bring your own medicine type

local hospital, but I am worried about the 9yr old twins'

bronchiectasis, especially because of the range of temperatures they'll

meet in a day. Should i take a nebulizer with us? How does that work

differently to the inhalers? or will lots of their inhalers be enough?

Obviously I'll be taking antibiotics to be made up if necessary, but is

there anything else i should be aware of? i know a friend went to

another part of N.africa and the private hospital had oxygen tanks but

they had run out of oxygen! Hopefully all will be well, but need

others' advice just to be on the safe side please!

[Guest guest]

Hi LizThanku so much for ur speedy replies ladies. Am replying frm my Blackberry so can't see how this shows on th site! Anyway - ur responses wee much appreciated. I tried th breathing exercises and they produce nothing and hurt my back too! I find exercise beta and clearly its necessary. I hve milder symptoms than urs Liz but will look in2 one or two of ur remedies etc to ten up.Does anybody know if annual infections accelerate the damage? That's the scary bit isn't it? My heart goes out to th people here who clearly hve it very bad.Wld luv to know abt the condition's acceleration if anybody reads this. My consultant initially said it can't get worse then under questioning on my 2nd visit (I'd read up on th condition on th net) said tht it cld progress negatively if I keep getting infections but didn't know how much. Has any1 out thre got much worse cos of infections??Let's just say this condition is the biggest incentive we cld have to get isn't it?!!!Take care of urself girls. Its good to know we're not alone! Where r u based in UK Liz?Sent from my BlackBerry® wireless deviceDate: Mon, 3 Nov 2008 11:21:52 -0000To: <bronchiectasis >Subject: RE: Newly diagnosed Hi I too joined recently but have not had much input. I was diagnosed pretty much with the same conditions as you describe but a bit worse - about 20% over both lungs I think. That was approx 4 years ago and I am 52 now. I find that if I do the breathing exercises and try and keep infection free I cope OK most of the time. I also take decongestant (sudafed) and an antihistamine (Benadryl) both those help but I still have the nasal drip that seems to be part of this. I take codeine for my back and that is ace at stopping the coughing - I didn't know it was a cough suppressant until recently, but of course it has other unpleasant side effects and I don't recommend the codeine laxative route to stop the cough on a long term basis. I have tried not to let Bronchie affect my life too much but inevitably it does, especially the fatigue. I do technique and find that really helps me in all sorts of ways. I also use a flutter device from time to time to remove gunk as I am not good at doing the percussion physio and the Active cycle of breathing techniques with it. I have a very bad back and find it is sometimes too physical. However I am determined to do everything I can to stop this disease progressing and that means keeping reasonably fit, clearing the chest and keeping as infection free as poss. I must say I was scared at reading some of the things on the forum - I have never heard of most of the devices and things that they do. All this saline and nebulisers - I can only conclude that those poor people must be much worse off then me.I hope I never get that bad it sounds really dreadful. There is another group that I look at regularly (BRUS) but have not joined and it does seem less scary. have a look at http://www.bronchiectasis.info/default.asp Good luck & keep well. Liz RE: travelling with bronchiectasis Janice, am hoping you rec’d responses by now. I was away on a cruise around the Mediterranean Sea and ended up in morocco for a few days. I took my nebulizer and needed it. Do you know if the electricity is comparable to ours? I was on a ship so it was ok, but in Spain, staying on land, it was not. The restaurants allow smoking so be careful. I don’t feel my rescue inhaler is anywhere as effective as my nebulizer, but maybe the boys are different. I didn’t think the temperature changes affected me at all. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of janice.djelloulSent: Tuesday, October 21, 2008 6:23 PMTo: bronchiectasis Subject: travelling with bronchiectasis Hoping for more advice please! we're planning to travel to North africa next month to visit family in a rural area. There are private hospitals which are better than the share-a-bed, bring your own medicine type local hospital, but I am worried about the 9yr old twins' bronchiectasis, especially because of the range of temperatures they'll meet in a day. Should i take a nebulizer with us? How does that work differently to the inhalers? or will lots of their inhalers be enough? Obviously I'll be taking antibiotics to be made up if necessary, but is there anything else i should be aware of? i know a friend went to another part of N.africa and the private hospital had oxygen tanks but they had run out of oxygen! Hopefully all will be well, but need others' advice just to be on the safe side please!

[Guest guest]

Hi - I believe annual infections can accelerate the damage. Every time you get an infection and your lungs get clogged up by infected mucus if it's not dealt with another bit can die off, I think it sort of suffocates the bits in the lung. I have annual flu jab and had pneumonia jab too at docs behest. I also keep a course of anti biotics in the house on docs instructions if I am unwell I am to start them immediately and not have to wait to see doc to get some. So far have had to do that 3 times.

some links http://www.meddean.luc.edu/lumen/MedEd/medicine/pulmonar/diseases/pul6.htm http://www.lunguk.org/you-and-your-lungs/conditions-and-diseases/bronchiectasis.htm

I'm in the Midlands Nr Stratford upon Avon.

Liz

RE: travelling with bronchiectasis

Janice, am hoping you rec’d responses by now. I was away on a cruise around the Mediterranean Sea and ended up in morocco for a few days. I took my nebulizer and needed it. Do you know if the electricity is comparable to ours? I was on a ship so it was ok, but in Spain, staying on land, it was not. The restaurants allow smoking so be careful. I don’t feel my rescue inhaler is anywhere as effective as my nebulizer, but maybe the boys are different. I didn’t think the temperature changes affected me at all.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of janice.djelloulSent: Tuesday, October 21, 2008 6:23 PMTo: bronchiectasis Subject: travelling with bronchiectasis

Hoping for more advice please! we're planning to travel to North africa next month to visit family in a rural area. There are private hospitals which are better than the share-a-bed, bring your own medicine type local hospital, but I am worried about the 9yr old twins' bronchiectasis, especially because of the range of temperatures they'll meet in a day. Should i take a nebulizer with us? How does that work differently to the inhalers? or will lots of their inhalers be enough? Obviously I'll be taking antibiotics to be made up if necessary, but is there anything else i should be aware of? i know a friend went to another part of N.africa and the private hospital had oxygen tanks but they had run out of oxygen! Hopefully all will be well, but need others' advice just to be on the safe side please!

[Guest guest]

Thx for that Liz. I hve antibiotics at home too. Kind of u to write back. God I'm SO gonna get fit when I get betta afta this bout! I hope u manage to stay mainly infection free. Is tuff wth so many germs around isn't it?! Sent from my BlackBerry® wireless deviceDate: Mon, 3 Nov 2008 12:53:06 -0000To: <bronchiectasis >Subject: RE: Newly diagnosed Hi - I believe annual infections can accelerate the damage. Every time you get an infection and your lungs get clogged up by infected mucus if it's not dealt with another bit can die off, I think it sort of suffocates the bits in the lung. I have annual flu jab and had pneumonia jab too at docs behest. I also keep a course of anti biotics in the house on docs instructions if I am unwell I am to start them immediately and not have to wait to see doc to get some. So far have had to do that 3 times. some links http://www.meddean.luc.edu/lumen/MedEd/medicine/pulmonar/diseases/pul6.htm http://www.lunguk.org/you-and-your-lungs/conditions-and-diseases/bronchiectasis.htm I'm in the Midlands Nr Stratford upon Avon. Liz RE: travelling with bronchiectasis Janice, am hoping you rec’d responses by now. I was away on a cruise around the Mediterranean Sea and ended up in morocco for a few days. I took my nebulizer and needed it. Do you know if the electricity is comparable to ours? I was on a ship so it was ok, but in Spain, staying on land, it was not. The restaurants allow smoking so be careful. I don’t feel my rescue inhaler is anywhere as effective as my nebulizer, but maybe the boys are different. I didn’t think the temperature changes affected me at all. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of janice.djelloulSent: Tuesday, October 21, 2008 6:23 PMTo: bronchiectasis Subject: travelling with bronchiectasis Hoping for more advice please! we're planning to travel to North africa next month to visit family in a rural area. There are private hospitals which are better than the share-a-bed, bring your own medicine type local hospital, but I am worried about the 9yr old twins' bronchiectasis, especially because of the range of temperatures they'll meet in a day. Should i take a nebulizer with us? How does that work differently to the inhalers? or will lots of their inhalers be enough? Obviously I'll be taking antibiotics to be made up if necessary, but is there anything else i should be aware of? i know a friend went to another part of N.africa and the private hospital had oxygen tanks but they had run out of oxygen! Hopefully all will be well, but need others' advice just to be on the safe side please!

[Guest guest]

Hi Liz,

Many – probably most – people go along for many years w/out much change, but certainly repeat infx, especially if left untreated or develop into more severe infx such as pneumonia etc, each time cause further deterioration, so it’s an accumulative process.... Hard to avoid viruses, but watch for signs of not getting well, changes in cough and sputum colour, try to have a good doctor if at all possible !! And a good specialist too, really helps.

I’ve come to the conclusion I’m as bad as I am b/cause of poor management, lack of information and help when I was younger, thus leading to several pneumonias, then the past decade of doctors failing to refer me to specialists, and the past 3 years the specialist I had failing to do anything at all.... So most treatment is too late for me, oral abx don’t work, only management now is 14-day IV abx (x2), for me torture.... Hence my urging you to seek out the best info you can, the best medical support you can find, support groups, anything, where you live, to help you maintain your lung health and avoid unnecessary deterioration.

I hope I haven’t scared you – I get the feeling most people don’t get this bad, I’m a bit unusual in having the condition since infancy, was dx widespread and well-advanced age 18, whereas most people only find onset later in life. I know have cystic bronchiectasis, which is long-term damage result.

The degree to which the condition worsens is pretty much in line with duration and severity of each infx, so if you’ve been managed well so far, and as you’re learning, can avoid long untreated infx, your deterioration will be negligible ... At least in UK your doctors may at least know of it!

All the best,

joy

[Guest guest]

Hi Liz, and crew,

I have been away from this site for some time but thought I should comment as it

may be read my those who like to be healthy and free of medication.

Firstly, exercise. Have you ever thought about how the body works, it's mostly

muscles told what to do by the brain. When you see weight lifters they don't

have skinny legs do they ? They build them up to lift the weight. With any lung

disease, particularly those where we have restrictions, we need strong muscles

to operate the lungs. Think about spare ribs, that meat is the muscle between

the ribs, it is there for a reason and those muscles, together with the

diaphragm power the expelling and intake of air into the lungs. Bronch and

Asthma patients need to get rid of gunk in the lungs that cannot be removed

naturally because the lungs are damaged, therefore we need VERY STRONG lung

muscles.

What we all need to do is build powerful lung muscles and the best way to do

this is to exercise to the point where we get totally puffed out for at least 20

minutes each day. I will tell you how I do this, I cycle and dance. During my

bike rides I usually start coughing after the first couple of miles, a few hills

helps the process and as I ride I cough up any gunk in my lungs. I usually stop

after about 5 miles and use my pocket (Omron NEU-22) nebuliser filled with

saline and ventolin (Salbutomol) and this opens the lungs further. Then I ride

again, and more gunk comes out. I repeat this for about an hour and a half 3

times a week.

The result is twofold, no gunk means less places for bugs to grow, and this

builds up my lung muscles. It takes time, but if you want a long life start NOW

and you will be surprised how quickly you improve.

Second to all of this is making sure bugs are not welcome in your lungs and I do

this by dipping a cotton bud (Q-Tip) into Tea-Tree Oil and putting a dab on my

tongue and up each nostril, again, 3 times a week. It is tough stuff, but when

inhaled it kills all the bugs. It has been two years since I have had

antibiotics.

I mentioned dance, whilst not as effective as cycling it far exceeds any benefit

people think they get from walking, (which is my opinion is next to nothing, but

better than nothing at all). Dance builds stamina and with clear lungs adds to

the muscle strength. A dance hall is not a great place to cough up gunk so

suggest you do that elsewhere.

Sea air is the other key ingrediant in my life, get as much as you can as often

as you can. Failing that, inhale saline through a nebuliser, it softens mucus

and kills bugs too.

I have a webpage which might help, a bit out of date but have a read.

www.muston.com and click the health link.

Lastly, yes, repeated infections do lung damge EVERY time, and little by little

you reduce lung capacity. I have retained 65% for 5 years now.

Best Wishes and good luck,

(yeh, still dancing and cycling)

=======

>

> Hi - I believe annual infections can accelerate the damage. Every

> time you get an infection and your lungs get clogged up by infected mucus if

> it's not dealt with another bit can die off, I think it sort of suffocates

> the bits in the lung. I have annual flu jab and had pneumonia jab too at

> docs behest. I also keep a course of anti biotics in the house on docs

> instructions if I am unwell I am to start them immediately and not have to

> wait to see doc to get some. So far have had to do that 3 times.

>

> some links

> http://www.meddean.luc.edu/lumen/MedEd/medicine/pulmonar/diseases/pul6.htm

> http://www.lunguk.org/you-and-your-lungs/conditions-and-diseases/bronchiecta

> sis.htm

>

> I'm in the Midlands Nr Stratford upon Avon.

>

> Liz

>

> travelling with bronchiectasis

>

>

>

> Hoping for more advice please! we're planning to travel to North africa

> next month to visit family in a rural area. There are private hospitals

> which are better than the share-a-bed, bring your own medicine type

> local hospital, but I am worried about the 9yr old twins'

> bronchiectasis, especially because of the range of temperatures they'll

> meet in a day. Should i take a nebulizer with us? How does that work

> differently to the inhalers? or will lots of their inhalers be enough?

> Obviously I'll be taking antibiotics to be made up if necessary, but is

> there anything else i should be aware of? i know a friend went to

> another part of N.africa and the private hospital had oxygen tanks but

> they had run out of oxygen! Hopefully all will be well, but need

> others' advice just to be on the safe side please!

>

[Guest guest]

---Hi Joy, Lee all- I know a family - came herre from thaiwan- who have a

eucaluptus farm- and they bottle tea tree oils etc and send all over the

world-- must tell you that it is great cleaner etc BUT be careful if putting

under pillow etc IF youu are asthmatic- most asthmatics find it too strong to

use in many ways- such strong scent sets of asthma attacks etc.

Great for cleaning sticky , gummy, surfaces, grime or even baths and basins etc

Wonderful for cleaning neb mask etc.

Telephone too.

Sandy-Q'land.

In bronchiectasis , joy wrote:

>

> Hi Lee,

> Tea tree oil comes from Australia so have used it for years ­ great for

> cuts, grazes, or put (soak a bit on tissues, cotton ball, hanky) in pillow

> if sinuses stuffy, helps breathe easier at night.... Can be drying on skin

> if use a lot tho. Eucalyptus oil is similar in properties ­ very aromatic.

> I put cotton wool swabs soaked in either in cupboards with sheets/towels or

> anywhere gets a bit damp-mold smelling, really freshens things up, cockies

> don¹t seem to like it.

>

> Happy breathing J

> Joy

> -- --

> " Wealth is nothing, position is nothing, fame is nothing.

> Who you become inside is everything.

> What happens to you is not as important as how you react to what happens. "

>