Diffuse Pan-bronchiolitis (DPB)

[MaggieB66]

Hi, I'm new to posting on the sight but have been an avid reader for a couple of years. The reason for posting is that I am hoping to find someone else who has the same rare lung illness as myself. I was diagnosed with Diffuse Pan Bronchiolitis (DPB) in March 2015 after two years of progressively becoming very unwell.

I have asthma, since the age of 5yrs, have been diagnosed with Bronchiectasis in 2005. I have always tried to keep health and exercise my lungs, so I used to run at least 20 miles per week. In 2012 I completed the London Marathon for the 4th time, and by the end of the year I was unable to run to the end of the road. I began to cough continuously which was always productive. After one hospital wasted my time, I was eventually referred to The London Chest Hospital. Here they took me seriously and after many test I was eventually admitted to be treated with intravenous antibiotics for 3 weeks.

Before being admitted into hospital my lung capacity had reduced to less than 50% due to them being filled with mucus, I was drowning. I have now gained most of the lung capacity back, but am unable to continue with my former exercise or anything where I'm exerted, walking is about it. My chest is very sore and my breathing can be laboured at times, the damage done is not known yet.

Due to the nature of this rare lung disease there is not very much information on it. I'm taking Azithromycin daily, this is basically keeping the lungs calm so hopefully they will not fill up again. Infections are my worst nightmare as they don't always present themselves as I expect, if an infection is not caught quickly then it can cause trouble.

It would be nice to find a fellow DPB sufferer, as it's not very nice going it on my own!

Sorry for the long post but didn't know where else to go.

Thanks

MaggieB66

[Jessy11]

Hi & welcome! You seem to have been through a lot recently & it must feel worse for you after leading such an active life. 4 marathons? I couldn't run the length of my garden! I'm sorry I don't know anything about your condition, but someone here will & they'll give you advice & a friendly chat. I wish you well. Keep in touch & let us know how you are getting on x

[sarcoid123 in reply to Jessy11]

I don't have your lung condition - I have had sarcoidosis of the lungs for 36 years and about three years ago I started producing lots of phlegm and coughing. My life changed when a physiotherapist taught me Active Cycle of Breathing Technique (ACBT) which enables me to cough up the phlegm morning and evening. Before that I was coughing with phlegm quite a lot during the day and had to sit up at night to sleep. There is lots of information about ACBT on the internet and Youtube, but your doctor might be able to refer you to a physiotherapist to teach it to you. The physiotherapist taught me to I lie down on each side to do the exercises.

I have also been given a nebuliser which I use before the ACBT and into which I put boiled cooled water or prescribed 7% salt solution morning and evening. Inhaling the mist loosens the phlegm. I do hope this helps you. I used to put my head over a bowl of hot water with a towel over my head!

You might also ask to be referred to a pulmonary rehabilitation course local to you at which you exercise gently and have talks on various lung related subjects.

I have been taking Azithromycin just Mondays, Wednesdays and Fridays since 2012. I have learned at my Pulmonary Rehabilation course that if your phlegm goes from white to yellow (or green) for 24 hours (which means you have an infection) you should see your doctor and ask your doctor for a sample 'pot' and take back a sample to be sent off for analysis so that a dedicated antibiotic to that infection can be prescribed.

I do hope this helps. Other people's experience is worth so much.

[MaggieB66 in reply to sarcoid123]

Hi, thanks for the reply. I'm pleased that you have your condition under control.

Whilst I was in hospital I was shown how to breath properly and various ways to cough the phlegm off my chest. I'm also using a nebuliser with Mucoclear daily. I'm taking Azithromycin daily and Omeprazole twice a day (to keep any reflux from making me cough). The last infection I had was 8 weeks ago, my cough never got worse, and only slightly changed colour, but my whole chest and back ached. After 5 days, the doctor confirmed that I had an infection.

It's understanding and reading my body, to know when to get down the doctors quickly to keep things under control. One of my worries is that having so many antibiotics all the time they will eventually not work, and then what?

I do keep active by walking my dog daily, and luckily she needs to stop and sniff often!

[Sarahm06]

Hello MaggieB66

I have just come across this site and your message - I too have DPB and was diagnosed 10 years ago at the Brompton, London. Have been mostly well over that time with odd exacerbations and a current 'splat' spend approx. 9 months of each year on azithromycin mon,wed & fri

would eb good to touch base - its very rare and not well understood (I was RBH 9th case)

thanks

[MaggieB66 in reply to Sarahm06]

Hi Sarahm06

It's good to hear from another rare DPB sufferer.

I'm still under the London chest at Barts, they are excellent. My last infection was October, so just keep going. I'm still on the azithromycin every day, it's been nearly 2 and a half years on it every day!

Are you back to normal life? I used to be a keen runner but have been able to get back to it. I walk loads but not anything that makes me too breathless as I end up with pains in my chest.

So pleased to hear from someone else as it makes you feel so alone.

thanks

Mags

[Sarahm06 in reply to MaggieB66]

HI Mags

I'm on Azith Mon, Wed & Fri for most of the year and try to have summer holidays off (med free) which is fab.

if I have an exacerbation I'm on 500 x 5days then 250 5 days and back to mon, wed fri. but then if it doesn't play by the rules like last Oct then more antibs sometime steroids but that's not the best although I have to get off my soap box and accept they have a small place in the plan!

I ride my horse 4 x a week and can walk quite fast but not really run anymore, agree with getting breathless which causes chest pain - not many people understand that one!

do you mind me asking how old are you? and how long have you had it? I'm 48 (on wed) and had it 10 years. So bit of an expert (on my own lungs) and just quote the Brompton when GP / local con doesn't get it!

thanks for coming back to me - so good to know I'm not along - I've not met anyone else with the same condition

Sarah x

[MaggieB66]

Hi Sarah

Thanks for coming back.

I'm 50, 51 in a couple of weeks time. I was diagnosed 2014, it has taken me a while to get to know this illness. I was running marathons up until 2012, it took 2 years and 2 hospitals to get the correct diagnosis.

I have 2 weeks of co amoxiclav 500/125mg 3 times a day, when I get exacerbation, which are always different but understanding it better now. I've always been in tune with my lungs as had to having asthma etc.

Do you still have regular appointments at the hospital? They are trying to get me off of azithromycin for a break but we are still trying.

Mags x