Hello, I’m new here…

[MrSoothe]

I’ve just joined. Looking for advice on remedial treatment of Bronchiectasis for a loved one. I’ve read Daniel Pecaut’s book Beating Bronchiectasis and will scan posts herein for information and maybe later ask some questions.

[RoadRunner44]

Hello and welcome to our friendly, knowledgeable site. I was diagnosed with bronchiectasis around 7 years ago. I am quite active and manage my condition well. You don't mention much in your first post so I assume your loved one is under the care of a consultant. One of the most useful things I found helped me was to be referred to a Pulmonary Rehabilitation Programme. This course usually lasts between 6 and 8 weeks and includes , two hour sessions twice a week. The first hour involves specific exercises and the second hour is educational. I would highly recommend anyone with bronchiectasis to attend one of these excellent courses. It not only helped me gain confidence in coping with my condition I found it also improved my overall physical condition. The educational part was so informative and answered many questions I needed answers to.

I hope this helps. If you have any specific questions there are some excellent, knowledgeable members on here who will be able to help.

Cheers for now.

C

[MrSoothe in reply to RoadRunner44]

Hi C (RoadRunner44). Thanks for welcoming me. Here’s more story…

I’m caring for a female family member in the UK diagnosed with HER2 inflammatory breast cancer in April 2019. They underwent chemotherapy, radiotherapy, surgery, and then a course of Herceptin until August last year (2020).

Cancer has infiltrated the thoracic lymph nodes and lungs. This secondary cancer is incurable yet treatable with Kadcyla (Trastuzumab emtansine) chemotherapy.

High dose radiotherapy during cancer treatment caused scarring in the lower left lung. Bronchiectasis is diagnosed. It’s uncontrolled. The patient coughs up sticky, milky phlegm. Coughing and retching forces are bursting blood vessels in the eyes, causing pain. Scary!

Bronchiectasis, I’m told, is a chronic inflammatory condition whose cause is unclear and that my family member will never fully recover. The oncologist is prescribing steroids. These produce horrid side effects.

Feeling impotent, I purchased Daniel Percaut’s book. Following a regime of nasal lavage, nebuliser, breathing techniques, acupuncture, diet and exercise, Daniel pushed his Bronchiectasis into remission. I am seeking advice and experience about these treatments. Nigel at Evergreen Nebulisers suggested I join this group.

You refer to a Pulmonary Rehabilitation Programme. Is this in the UK or another country? I will see if something like this is available through our GP surgery.

I will read through member’s posts looking for knowledge. Meanwhile, I am grateful if members post additional suggestions below!

[loriLKI in reply to MrSoothe]

So sorry to hear about your family member. And thanks for sharing the info on book - I had no idea and am curious to read it. Also sounds like the pulmonary program might be great. I went to see a chest physio for 6 sessions who taught me breathing techniques which made a world of difference to me. I went from not being able to told a conversation without coughing my lungs out to running a marathon the next year (but I’ve always been fit). For me physical exercise and the breathing exercises help keep it under control. I hope your family member can see a chest physio to help get the lungs cleared and stay cleared

[RoadRunner44 in reply to MrSoothe]

Hello again,I'm so sorry to hear about your family member who you are caring for. You are right however to try to find answers to whatever way you can to help her. Although she has bronchiectasis she also has a number of other complex conditions to deal with. This complicates the situation somewhat. I would suggest in the first instance you need to discuss your concerns with her oncologist. He/she should be able to work with any other consultants who understand these things and together, plan a programme of action in her interests.

[MrSoothe]

For those interested in the book I mention, Daniel Pecaut has graciously provided an online version for free here:danielpecaut.com/free-bronc...

The printed version is available cheaply via Amazon, where it has become a bestseller. It is not a long book. You may finish it in two to three sittings.

[MrSoothe]

Within the last couple of hours, I have been reading about the Pulmonary Rehabilitation Programme offered by the British Lung Foundation. I have asked our GP to refer my family member to the Programme. Does anyone know if the Programme is run in either North or East Hampshire, perhaps at Basingstoke Hospital (our nearest)? What do people think of this Programme – does it help?

blf.org.uk/support-for-you/...

[Karenanne61]

I was dragged kicking and screaming to pulmonary rehabilitation following type 2 respiratory failure. I gained a lot from the sessions. E.g. Learning to excercise gently in a way appropriate to me. Now I visit the the gym twice a week and enjoy yoga and pilates. It also gave me the opportunity to talk with experts such as respiratory physiotherapists. We also had talks relating to our conditions and how to keep healthy as well as a chance to chat to others in the same boat.

[MrSoothe in reply to Karenanne61]

Thanks, Karenanne61. Type 2 Respiratory Failure sounds really serious! I’m glad you found the Pulmonary Rehabilitation Programme helped. I imagine being able to network with other sufferers is almost as beneficial as having access to therapists?

[Karenanne61 in reply to MrSoothe]

I didn't make as much of meeting other patients as I should have. I was still slightly shell shocked at being so ill.

[Rattle]

Hello I was diagnosed with bronchiectasis about 3 years ago. I also have asthma and part of my right lung removed (due to a congenital problem) and a history of lung problem as a child. These lung problems are most likely the reason for my bronchiectasis.

I think you are local to me, as I live near Odiham and is under the care of a respiratory consultant at Basingstoke hospital.

It seems they run some pulmonary rehabilitation clinics there at least, I found this link:

nhs.uk/Services/hospitals/S...

I haven't attended any pulmonary rehabilitation programme but I have had some advice from the pulmonary physios re: breathing exercises.

I can also vouch for exercise as being a big help in coping with this condition. Giving up work last year has given me a lot of opportunities to work on my health and getting fitter and my lungs, coughing and breathing are in best shape for a long time.

Wishing you all the best for you and your relative x