Recent Diagnosis
Posted , 10 users are following.
hi all
After years of chest infections and an almost continuous cough, I was finally diagnosed with Bronchiectasis yesterday.
In a strange way I’m glad to find out that there’s actually something wrong with me!
Apart from feeling ill ill a lot of the time, I’ve found the last couple of years so embarrassing. Lost count of the number of times I’ve had to cancel arrangements as I’ve yet another chest infection. I’ve had to walk out at two weddings, grandsons nativity play, a funeral and the cinema, due to coughing non stop.
Am interested to know if anyone has found coughing has lead to incontinence. I’m 56, had three kids and have had to resort to buying tenna ladies pants! I saw my doctor about it, but was just told to do pelvic floor exercises. It’s only when I’ve got a chest infection this happens, but it’s most embarrassing and made me very depressed.
They have no idea how I came to have Bronchiectasis and have said it’s idiopathic. The only possible reason could be down to having glandular fever badly when I was 17.
Ive been referred for physiotherapy to learn how to cough up mucus, but have read up on techniques and hopefully this will help.
I had never heard of Bronchiectasis until yesterday, and came across this group. Obviously it effects a lot of people. I’ve read loads of the posts on here and found it really helpful.
1 like, 13 replies
aitarg35939 vickylou
Posted
Hi Vickylou
I missed what I call The Wedding of The Century one year ago, and trips to Montreal and the coast in this last year. It sucks! But once they get your infection under control & have you on good meds, perhaps you'll be coughing less and life will get easier. After 8-10 months of being sick, I thought I'd never feel better again. Thank goodness I was wrong. I hope the same happens for you.
Many many women without any lung disease "go" a bit when they cough (or laugh). It's more common among women who've had several children than among childless women like me, but it even happened to a friend in 9th grade who'd never had sex. It also happens to my teen goddaughter, and she's been doing ballet since she was 6 so clearly has pretty toned muscles. Some women are more prone. I hope the exercises help. Here in the States those special pants are expensive.
It's understandable to feel some relief with a diagnosis. It gives us a name to share with friends, tho I've learned to tell them that this is the only disease which Google (erroneously) thinks is less dangerous than stating at a wall for 5 minutes. But a diagnosis also tells us what we don't have, such as tb or cancer. And for that we can be both relieved and thankful.
Hope you feel better soon.
broadsword vickylou
Posted
i am sorry to learn you gave Bronchiectasis. I was diagnosed about 10 years ago and had had it many years. Elsewhere on this site I have referred to finding that azrythromycin was my savior. I have also referred to the British Thoracic Society guidelines on their site under the tab, Standards of care then guidelines. My then consultant, a luminary on this disease said it stems from a childhood disease, I think he said measles. However in those days, everyone got everything so establishing a causal link was not an exact science.
i wish you well managing this disease. Fortunately while it is hard to bear it is not life limiting, providing infections are managed.
Best wishes
Brian
aitarg35939 broadsword
Posted
dancing_queen vickylou
Posted
I’m very much the same. The constant coughing is a nightmare, and yes, it does cause incontinence from the strain of coughing. Once you have learnt to huff it will make it a lot easier for you and it may ease the deep coughing which, in turn, may alleviate the incontinence.
You will always have times when you feel down but you will learn to live with it and get on with living a happy life.
Best of luck
judy888 vickylou
Posted
Hi
It took me years to get properly diagnosed and then - eventually - to get onto an effective antibiotic that has really really helped.
The relentless coughing made it very hard to go 'out' and during this time I had osteoporosis issues - every cough was so painful for my spine.
Incontinence also happened to me too BUT once the coughing was under control this has gone away.
People on this site were such a help with their advice and encouragement.
Best of luck - I can't believe how the latest meds have helped and I needed encouragement from people here to try them
cheers
Judy
cheers
judy
Forest55 judy888
Posted
Can I ask you how you got your coughing under control, as for me I am always coughing and any tips would be great.
Many thanks forest55
judy888 Forest55
Posted
Hi Forest
An antibiotic helped ( sorry, can't recall which - there have been a few
BUT then the side effects kicked in after a few months & were too annoying and depressing - v upset tummy, skin & scalp probs etc.
Once I was put on Azithromycin, ( called ' Z pack in the US. I'm in Australia) a small dose taken 3 times a week - I have virtually stopped coughing and my coughing was v productive and exhausting before this. You can imagine the relief !!
I take probiotics to help my stomach.
I'm 66 and it took me ages here in rural Aus to get to see a respiratory therapist. Apparently the bug that infects my lungs isn't one of the worst that people get so possibly this is relevant
Good luck... wishing you well.
I have to go off them soon ( to give my system a break I guess) but at the first sign of a new infection I'm going back on them.
alison16273 vickylou
Posted
I am a diagnosed by CT scan a couple of weeks ago and am finding it difficult to come to terms with as a normally fit and healthy 59 year old
I am trying everything holistic and positive thinking, self healing books on top of 8th course of antibiotics in 8 months. Going to a wedding on Friday and really not looking forward to it as my coughing starts in avengence at 15.30 and lasts 4 hours. Trying to remain optimistic but it really frustrates and embarrasses me.
aitarg35939 alison16273
Posted
vickylou alison16273
Posted
Looks like we’ve similar stories!!
Easier said than done, but try and enjoy the wedding 😄😄🍾🍾
alison16273 aitarg35939
Posted
Hi. The only meds’ I have been given is ANOROP inhaler which really does not make a difference. Sputum shows haemophillus influenza but doxycycline not making any difference .taking guaiferesin a couple of times a day but not really breaking anything up so coughing for hours and throat really sore. Going on holiday next week and cannot even be bothered to pack which is really not like me. I know there are people a lot worse but really fed up with how it makes you feel. Hope you are managing.
aitarg35939 alison16273
Posted
I don't know more about that h. influenza than what's on wiki, but they don't list doxy as something that's going to knock out your illness. Wiki can't be fully trusted, but it might be worth a conversation with your pharmacist as to whether doxy ever works for this flu.
As long as you've got the flu It's hard to say what's working & what's not. On pulmo's orders, I take 1200mg of tablet guafenisin twice daily, each time with at least 8 oz of water, and tons of water in between. About 10 years ago a COPD nurse wanted me to take 800mg of guafenisin twice daily. I wish I'd stuck with that all these years!
I am fine right now. My lungs have been cleared for what should be minor back surgery because my PFTs have improved so much.
I hope they can get you feeling better pronto.
Aitarg
vickylou
Posted
Many thanks for the warm welcome to this forum.
Only joined yesterday and was amazed to get such helpful advice. My first reaction on diagnosis, was doom and gloom 😰😰
However, after reading my replies, I don’t feel as isolated and much more positive.
Ok I’ve got Bronchiectasis. Not the end of the world, it can be managed and I can get advice from fellow sufferers here.
Many thanks