hello (bronchiectasis)

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Shibley Posted: 07-08-2009 1:35 PM

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Please post here, if you are carer of a patient with bronchiectasis, or you yourself suffer from bronchiectasis.

As themes develop over time, they will probably be separated into separate threads.

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michelle replied on 07-08-2009 10:37 PM

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Hi,

i hcave had bronchiectais for the last 20 years. i as 23 when diagnosed . It started off with chest infections, and being quite well inbetween. It has progressed to the point where i am now on o2 24/7 1 lpm. I have been on 0

02 for last  years. I do have complications with asthma syptoms as in i have allergic reactions from foods and inhalants eg pollens housedust mite etc. I manage my bronch quite well in that i do not cough hugh amounts of mucus anymore unless i have infection. my main problems are severe short f breath caused by the scarring in my lungs.

In spite of  everything i have been married 20 years and have two children . It certainly has not been easy. I have to say if it was not for my family i may have given up in the few years,

I did go to harefield about transplant and although  was ill enough  i could not have it has my antibodies were to

high, which means my body would reject . I t  was  a massive blow to hear that. I was not sure i wanted to go on the list yet, but unfortunatly dont have the option now. One thing i was told my harefield consultant was to try and walk 20 min a day to excercise lungs. That has stuck in my mind, after a year of moping about by illness.

I got up one day and thought if you dont help yourself then u will get worse So now i go to the gym when im able, even if its for 15 mins to do weights cos least they keeping strength going. I am at pulmonary rehab at

setting up a breathe easy group and encouraged our local ymca to do the blf active program which they have just passed and the classes have started. so all is good positive is the only way to be.

hope i have not gone on too long. found this quite therapeutic

yours michele

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Lisa replied on 07-21-2009 6:57 PM

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Hi

Im 25 yrs old & was diagnosedct with bronchietasis at age 21, i had stephocohil pneumonia (i know that is spelt wrong lol) at age 11 which was very serious i almost died!!

It doesnt normally get me down, in May i had built myself up to going to the gym for 90minutes 3 times a week, i then however got pneumonia for the 2nd time, then fell pregnant shortly after.

Im finding it really hard at the minute as ive just found out ive got the infection psuedermonas (thats not spelt right either lol) so im really tired all the time as well as being pregnant, im also frightened of the dreaded swine flu

Thanks

Lisa

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sylvia replied on 08-17-2009 2:36 PM

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  hi i have had bronchiesctasis since i can remember,  over the years it has slowly got worse and these past five years the worst of all i am 70 now so perhaps i shouldnt complain as the medication today can be very helpful although i do not yet take steriods. i have healthy children and grandchildren so that is a blessing in its self.

                                           sylvia.

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SusieQ replied on 08-17-2009 9:58 PM

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Hi Sylvia,

Welcome and good to see you posting on here.

Sounds as if you are doing really, really well.  Perhaps you could share some of your tips and advice with the rest of us.

Hope to "speak" again

Sue

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Geof the Miner replied on 08-18-2009 12:22 AM

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Hello Sylvia. No I don't know very much about Bronchietasis infact struggling to spell it.

I would love to have this oppertunity to welcome you to our very special group, where I am sure that you receive no end of help from our experts and when I say experts I mean the people on here who are living day to day and year to year an have found ways of stopping our disease from ruining our lives and controlling our lives. So yes Sylvia what a great name yes you have a song and thinking of the words of the song I just can't believe that you are 70 years of age how old would that make Sylvia's Mother? just a little fun. Sylvia this next little thing is not fun though                         

sylvia:

i am 70 now so perhaps i shouldnt complain

No Sylvia why shouldn't you complain because you are ZZZZZZ sorry forgot what age you are but please don't make out your lucky we are the people that are lucky for finding us So yes Sylvia please make yourself at home and no matter how foolish it may sound to you just ask we have all asked stupid questions, if you ask most of our friends on here they will say I still do. You look after yourself and we are here Geof the Miner

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sylvia replied on 08-19-2009 9:45 PM

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thanks for the welcome  from you and  everyone else who replied on the forum. i think its trial and error with medication,  what helps one person is not suitable for another but i find that keeping active out in the fresh air has been very beneficial to me winter and summer.    sylvia

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SusieQ replied on 08-20-2009 9:52 AM

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Hi Sylvia,

Agree about the medication, but not sure about keeping active outside.  I also have COPD, so cold weather triggers lungs as does hot, humid weather, neither of which are conducive to activity. 

Just wondering whether you do any special breathing exercises to clear the lungs on a daily basis?  I do a couple, but always on the look out for any others that might be added to the list.

Hope you stay as well as you are,

Sue

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sylvia replied on 08-21-2009 11:45 AM

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hi sue, no i do not do any breathing exercise but i did try postural drainage for a long time but gave up as i was not happy with the results, a long walk up the hill at the back my home(with the dog helping me of course) brought better results and i do that every morning. and i go swimming once or twice a week , its a struggle  at first getting your breath but once you get going it is worth it just to help get rid of that mucas and be able to breath normal for a change.

  the only worry now is my joints are beginning to complain so you can not win either way.

                                                                 take care sylvia

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Lorraine F replied on 08-21-2009 3:15 PM

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Hi, I was diagnosed with bronchiectasis in 2007 after having infection after infection. I have  had Asthma since I was 4, the consultant says this is when my bronchiectasis goes back to !

I do try to manage it with regular physio, but have had quite a few infections so far this year.

If any one is interested there is another group for people who suffer bronc. where we can just chat and get advice. You can find it on

http://www.bronchiectasis.info/  I think if we all try and help each other sometimes things don't seem too bad.

Thanks for 'listening' to me.

Lorraine

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Geof the Miner replied on 08-21-2009 4:58 PM

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Hi Lorraine. Welcome to our site were it is not just a site about Bronchiectasis,  COPD, any kind of lung disease it is about friendship, it is about helping each other live a real good quality of life, so to us lorraine sometimes it is not about the disease but it is about being together and helping each other.

To verify what I am saying take a look at some of our post on this Forum they are inspirational by people with very serious problems and yes thank you Lorraine for inviting us to your Forum but for me I am happy here and it now looks as my problems are Chronic Bronchitis, Emphysema and now yes Bronchiectasis. If I need to know about any of the madical conditions then I can go and see specialist and if I need to find short cuts round any of these conditions yes I could go to an individual group on one of our complaints but why all I need to do on here is ask and in no time at all we have three of the best researchers I have met In June, SuesieQ and Ann Lorne so really Lorraine I am on the Forum for the love and care handed out by each person on here.

But a massive thank you for letting us know Geof the Miner  Ps these are only my personal thoughts Geof

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Shibley replied on 08-22-2009 9:40 AM

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Lorraine F:

Hi, I was diagnosed with bronchiectasis in 2007 after having infection after infection. I have  had Asthma since I was 4, the consultant says this is when my bronchiectasis goes back to !

I do try to manage it with regular physio, but have had quite a few infections so far this year.

If any one is interested there is another group for people who suffer bronc. where we can just chat and get advice. You can find it on

http://www.bronchiectasis.info/  I think if we all try and help each other sometimes things don't seem too bad.

Thanks for 'listening' to me.

Lorraine

 

Thanks for a very informative post Lorraine F. This looks interesting [however please note, as usual, the British Lung Foundation is not in any way responsible for the contents of other sites.]

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waldi2867 replied on 09-14-2009 9:47 PM

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Hi

I've just joined the BLF discussion forum.  I've suffered from bronchiectasis with asthma - right lung only - for about 15 years.  Probably longer when I look back, just wasn't diagnosed at that point.

One of the biggest issues for me is just how unsympathetic people can be when you're ill and wondered if other members experienced this, and if so how you've dealt with it.  I often get the 'pull yourself together' talk from close family members which is quite hurtful.  I often feel that I'm not only having to manage a debilitating illness, but also the expectations of others at a time when I can barely take care of myself.

Another issue for me is meds - I'm sure that if I could just buy ABs over the counter - as in some other EU countries - that I would be able to better manage my condition, as I would address the sitution sooner.  My GP is pretty good, but I just don't like going to the Doc's and often find myself just trying to shake-off an infection, when in fact all I'm doing is giving it a few more days to take hold.  I think there's an element of sub-conscious guilt to this, that results from other people's views and the resulting feeling that I can't possibly be ill as often as I am.

Thanks - Paul 

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Geof the Miner replied on 09-14-2009 11:15 PM

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Hello Paul,

Welcome to the Forum

Paul I can unite with you about the unsympethetic people yes even my wife Ann used to say there isn't that much wrong most of it is in my mind. Yes and the pull your self together you'll end up killing yourself if onle she knew that was what I wanted at that time. The reason all this was happening was because I was being wrongly diagnosed and yes I know now a lot of it was due to me not being entirely truthful To my GP so he kept saying that I had Asthma. My thoughts were what when I am coughing mouthfulls of blood.

It wasn't till I was correctly diagnosed with Chronic Bronchitis and Emphysema plus put on the proper treatment and sent on Pulmonary Rehab I started to improve until I end up living the sort of life that I am experiencing now. Paul you have said if you have been  seen by a Respiratory Specialist at your hospital. Also some advice is to push to get on the Pulmonary Rehab course apart from showing you the importance of exercise it will help you get rid of that element of sub-conscious guilt and yes Paul we have all been through ourselves. About your Antibiotics and Steroids your GP should make sure that you have a supply of both at home at all times so when you have taken one lot there is another perscription waiting.

Now paul you have to make a list to go with you to your GP a referal to a respiratory specialist, a referal to Pulmonary Rehab your Respiratory specialist may do that, and a supply of Antibiotics for reserve at home. then A bucket full of smiles

Don't worry about what others do or think you concentrate on getting your self a better quality of life and believe it or not you have made a fantastic move to that end already by clicking on this Forum where most of us have experienced what you are noe going through and it may be hard for you to believe but there are people on here who have had it even worse and by just talking with other people with the same conditions are now living a brilliant lifestyle and that is what is waiting for you. There is no brilliant miracle to make your disease go away but there is the miracle of a brilliant life how would I know because I have been through it all and here I am helping you. and one day paul you will be doing the same helping someone esle. Do you fancy taking my challenge? I promise i will be here for you if you do. Start smiling Paul and will see you soon Geof the Miner

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margaret1 replied on 09-15-2009 9:30 AM

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Hya paul.....i understand about what you said

waldi2867:

but I just don't like going to the Doc's and often find myself just trying to shake-off an infection, when in fact all I'm doing is giving it a few more days to take hold.  I think there's an element of sub-conscious guilt to this, that results from other people's views and the resulting feeling that I can't possibly be ill as often as I am.

i have been in the same position.....but there is a scheme being set up in my area which should 'sort out' our decisions to get help or not

it is called Tele health......it is a machine attached to your phone line and every morning it takes your blood pressure....pulse....oxygen concentrations...and even your weight...this information is sent to your nursing team and if they identify a problem they will visit you

i am waiting for this piece of technology to be delivered......i am going to be a 'guinea pig' for this so it will not be available country wide yet....i think it is an excellent idea......

i will keep you informed when i 'go live'

but in the mean time don't forget you cannot 'shake of infection'....you need meds....ask about having an emergency supply at home.....i have them......but even then before i take them i have to recognize the fact the the problem is serious enough to take them......we cannot win .....and as for other peoples views about being ill or not they cannot in a million years understand what it is like......you have to have it....that is why this site is so useful.....we all understand......try to keep happy....i think this is the best form of medicine in the world....apart from a visit from my grandchildren and you cannot get that on prescription!!!!

cheers Margaret

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Lisa replied on 09-15-2009 8:50 PM

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Hi

Im 25 years old and have Bronchioectasis...

Ive just been reading this forum about people not being sympathetic towards the illness & about not going to the DR's but trying to shake of the infection instead, I have to agree!!! i find it easier to put in sputum samples rather than seeing a DR (and wasting an appointment as they wont give me anything until they know what it is anyway) then they just contact me with the antibiotics i need depending on the results, sounds simple enough!! but trying to explain this to the receptionist on the phone can be hard work sometimes, they always insist i need to see a DR, so i must admit i dont bother sometimes, of course, until it gets worse then i have to go anyway lol.

As for people not being sympathetic most people cant  say the word Bronchioectasis (or spell it in my case lol) therefore unfortunatley they dont understand it, i just refer to it as a "chronic lung condition" rather than its proper name, it also annoys me when people say "you should lay of those fags.."  or " have you got a cold again?.." I have however got to the point were i dont bother explaining that its the illness, i just let them think what they want...and i must admit its not bothering as much as i thought it would  

Take Care

Lisa

xx

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Geof the Miner replied on 09-15-2009 9:23 PM

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Hi Lisa,

I like the tongue sticking out but hope its for those irresponsable people that we all meet in life, I.e. when we park in disable spaces and just because no one is struggling to get a wheelchair out for us to sit in or crutches they sit there shaking their heads, but I notice they are never there when we return coughing and screaming for breath,

I had the same problem at my GP's practice getting through the tin god receptionist has we tended to call them because they thought that they were DR's but thank god that as changed in our practice, where we now have no problems getting our reserve Antibiotics and Steroids, but it as only just started to be like that. If you look on my post its not far away when I was complaining on here about not getting any recognition, but slowly it seems to be changing.

Like I said to Paul on the last post on this thread I don't know to much about Bronchietasis or the spelling but all the side effects are the same has we with COPD and no I think I may have got that wrong because I saw something that the BLF was teaching us that Bronchietasis was virtually under the umbrella of COPD and that is why Lisa we are here to try and help each other.

Lisa here may be a stupid question aren't you the same Lisa that was expecting a beatiful baby, when you get to my age your memory starts to falter, any way even if not you go steady and look after your self and if I am right then the both of you Love Geof the Miner.

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Lisa replied on 09-15-2009 9:37 PM

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Hi Geoff

Thats whats good about this website, that we can contact each other & understand what others are going through (or just have a rant in my case ha ha) and yes the sticky out tongue is for all those people who judge without knowing the whole story

Your memory isnt that bad i am the pregnant one, im 17 wks now, just had an antenatal today and heard the heartbeat &  heard it kick twice very strange but brilliant

Take care

Lisa

xx

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Geof the Miner replied on 09-15-2009 10:11 PM

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Well done Lisa.

I might be getting old but never forget a pretty face, don't get to see many just lately Her indoors doesn't let me out doesn't trust  me Ann thinks I would colapse with being breathless.

I have someone else I know who is expecting her baby she works in our Regional office and it was suggested to her wouldn't she like to call it Geof if it was a boy. I wont say her answer.

So Lisa young young lady you promise that not only will you look after yourself but your litle baby has well and please let us know. I had to do some deleting fast I wrote our little baby. The thing is lisa we will be thinking of you Love Geof the Miner.        XX the baby

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Maureen replied on 09-15-2009 10:21 PM

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Hi Lisa

Just wanted to say good luck with your pregnancy, you are far too young to be having to cope with all the problems that go with COPD and Bronchiectasis ( hope that is spelt right ) whilst pregnant.

Good luck Lisa, and here's hoping that you have a very healthy pregnancy.

love Maureen

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michelle replied on 09-16-2009 10:19 AM

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Hi all,

Lisa I hope your pregnancy is going well. I know when I was pregnant my Bronchiectasis was not too bad. I did suffer after though so make sure even though you will be busy with baby, that you look after yourself too.

I have had the same comments has most people on here, eg thats a nasty cough you should give up the fags, or is that asthma you got. When I so no its a condition called Bronchiectasis I get "whats that then? I always say its similar to Cystic Fibrosis except we dont have the digestive problems. I have been tested for Cystic Fibrosis on numerous occasions and it always came back inconclusive.

Re; Meds you should always have a reserve at home because the more infections you have the more damage you are doing to your lungs. In my twenties I think I went through a stage of thinking I could shake off infections, but obviously couldnt. Has a result have now got irreversible damage called obliterative Bronchilitos. (excuse spelling).

I must say it helps when you have and excellent gp. I only have to ring him for anything, he knows if I actually visit him at surgery I am really ill. Eg ready for the hospital.

regards Michelle

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Lisa replied on 09-20-2009 10:22 AM

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Hi

Thanks everyone for your advice and support, im seeing my specialist next week so will mention about having an emergency supply.

Take Care

Lisa

x

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Nic replied on 10-15-2009 4:38 PM

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Hi my name is Nicola I am 29 and recently married. I have had bronchiectasis since I was about 16 although they have never found a cause.

It is nice to read through other peoples experiences especially at a time when my husband and I are thinking of starting a family. I have never met anyone who has bronchiectasis before but my family are very sympathetic and supportive.

If anyone has any thoughts or experiences of starting a family whilst having bronchiectasis it would be most welcome.

Nicola

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SusieQ replied on 10-15-2009 4:56 PM

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Hi Nicola

Good to see you on here. 

I am a late starter as far as bronchiectasis is concerned;  was diagnosed with Emphysema some 10 years ago and then had a hell of a winter with one infection after another (was working in a primary school helping young children to read!);  those infections (think it was 12 in all that winter) started up the bronchiectasis.  Am now trying to limit the damage by limiting further infections, which as you well know is quite difficult.

On the other hand have known others, like yourself, who have had it since childhood without any obvious cause.  One is now in her 70s, so there is lots to look forward to.

As for starting a family, cannot help there, but there are others on here with bronchiectasis and famillies.  Lisa who has just posted above is around 19 / 20 weeks pregnant and sounds as if she is doing really well.  Also Michelle - she experienced a bronchiectatic pregnancies.   Not sure if there is anyone else , but am sure that those with the relevant experience will come on and help and answer any questions you might have.

Good luck,

Sue

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michelle replied on 10-15-2009 8:55 PM

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Hi Nicola,

I ws diagnosed with bronch. at 19. i have had two children when i was 23 and 29. My bronch, back then was mild, only having trouble when i got a cold etc, My pregnancies both went well just having one hospital stay with infection with my second child.

I would say consult your specialist before you try because of medication you might be on an also if you are well enough. My bronch got much worse after having my children . Not sure if this was natural progression of the disease or hormones etc after.

i have coped well with my bronc. and kids although it has not been easy with lots of hospita stays over the years. It

has been very hard at times on my partner and kids as i am now o oxygen 24/7. But i was determined to have children abd no let this disease beat me. Its my kids that keep me going.

Regards Michelle

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sylvia replied on 10-16-2009 2:29 PM

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hi Nicola, your post brings back memories of me at your age, i got married at 23,  after six months i ended up in hospital for six weeks with pleurisy, my mother then bless her said (which was true) that i did not have her to look after me, so after that i was more careful had my two children and they kept me as fit as a fiddle, so even though my condition has always been with me, (i believe myself that i was born with it) you cannot be to complacent and must look after no 1.  though i have just turned 71 and get more out of puff as i get older i do not let it beat me and keep looking after no 1.

good look and take care     sylvia.

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Nic replied on 10-16-2009 3:01 PM

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Hey

Thanks for all your messages, makes me feel like i am not alone. I am pretty well at the moment going to see my specialist a week monday so will start thinking baout babies after that!!

I like to keep myself fit so aslong as I can keep doing that I think the pregnancy will be fine!! positive thinking I suppose!

Nicola

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Lisa replied on 10-25-2009 10:46 AM

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Hi Nicola

Ive not been on here for a while so have only just seen your message regarding pregnancy.

Im 25 years old and have had bad lungs since age 11 then was diagnosed with Bronchiectasis at age 21, im now 23 weeks pregnant and it all seems to be going fine, in fact i think i have coped better than some of my more healthier friends lol, i also go the chest infection Psuedermonas (which i got when i was 8 weeks pregnant) which im having to go in hospital for in November to get cleared (10 days of IV antibiotics-but shouldnt affect the baby in anyway) this infection makes me cough alot but they specialists have assured me the baby wont be feeling it.

If you do get pregnant then your chest specialist will keep a very close eye on you, i have also been reffered to a pregnancy specialist as well as the midwife antenatal checks, so i pretty much see someone everyone month or so, its actually making the pregnancy go really fast and i get to hear the babys heartbeat & have more scans than the usual people get so thats a bonus

Just try and keep yourself as active as possible and dont be afraid to do things you did before, when you do get pregnant, you know your own body and limits so just listen to what your body tells you and enjoy the pregnancy.

Hope this helps and goodluck with starting a family, if you have any questions you think i can help with just ask.

Lisa

xxx

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kieron_c replied on 01-31-2010 10:55 AM

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Hello everyone,

My name is kieron im 23 and I have a disease called Churg-Strauss Syndrome Vasculitis, which has been the catalyst for my Asthma and Bronchiectasis. I have struggled with my lungs for 5 years now and they just seem to be getting worse and worse not to metion the embarrasment it causes with the constant cough and sputum production.

I have just passed my IB medical review and have a form for the DLA can anyone give me any advice on the DLA and if it is something I should pursue?

Many thanks

Kieron

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kieron_c replied on 01-31-2010 6:00 PM

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Hey June,

Thank you for your quick response and adivce perhaps i shall start my own thread in Help and Assitance Forumto explain my situation a bit better.  I have spoken to a nurse and a benfeits advisor from the BLF in aug/sep last year but I havent been very confident or well enough to cope with the dreded DLA!  

Kieron ;o)

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Rosemary Dearie replied on 04-19-2010 8:02 PM

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Hi, I have just been for chest physio, namely Autogenic Drainage, it is a method of clearing your airways and helps you to clear mucus from your airways on your own. maybe ask youe GP about this.

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SusieQ replied on 04-20-2010 5:25 PM

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Rosemary

My Goddaughter is a physio and she taught me how to do autogenic drainage - it is very good and I try to do something similar every morning.  I cut corners and do my own version, but the end result, which is what counts, is the same.

Sue

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alanjudy replied on 04-20-2010 7:28 PM

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I have just had another blood test after a course of antibiotics and my ESR is now normal but the CRP has gone up to 24. I was diagnosed with bronchiectasis in Feb/March. I will be seeing the consultant again soon to discuss the blood test but can anyone help. This is all new to me. I take mucodyne and use an inhaler.

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SusieQ replied on 04-20-2010 8:45 PM

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Hi

All I can add, from my own experience, is that I believe ESR and CRP to be similar measurements, show whether or not there is infection/inflammation somewhere in the body.  Was once told by a doc (not mine) that people did not measure ESR anymore, only CRP.  Whether or not that is true,  I do still have these checks done, usually when an infection is departing, just to make sure it really has gone.  Not sure when you are seeing the consultant but hopefully it will be fairly soon; however if you are worried in the meantime, then I would poddle along and chat with your GP.

I have bronchiectasis and am on mucodyne as well - also two inhalers as I also have COPD in the mix.

Sue