Uncertainty over dad's condition.

[AlexBenn]

Hi everyone, I've joined the group as I am caring for my dad who has copd (for a long time) and has recently been diagnosed with bronchiectasis. Myself and my family feel dad is deteriorating quickly, he also thinks the same. So far we haven't found anyone medical or otherwise to guide us through this, and his likely prognosis. He is scared and we can't comfort him. Any suggestions welcome. We live in West Yorkshire.

[Hidden]

Welcome Alex. There are lots of really supportive people here. Some with copd some with bronchiectasis and some with both. Between us we have lots of experience of living with them. I guess that your Dad has experience of livng with copd and that it is the addition of a bronch diagnosis which is worrying him. They are 2 different conditions and need different management. Bronch can only be diagnosed by ct scan and he should really have a bronch specialist to oversee his treatment. Look for a bronch specialist at your nearest large teaching hospital and insist on a referral. GPs know virtually nothing about bronch and general respiratory consultants very little more.In the meantime, do ask us about anything in particular that your Dad needs help with managing.

[sassy59]

Just want to say welcome to the forum and hope your dad gets all the medical help he needs. Thinking of you all. You’re doing a wonderful job in caring for dad. I’m a carer too for my husband who has COPD, asthma, and sarcoidosis. Xxx

[Patk1]

Welcome to the forum.Do be proactive in seeking answers for dad.

With bronchiectasis, he will need ct scan to diagnose it.if has infection,bronchiectasis requires minimum of 14days antibiotics.

If he's mucousy,he could ask for carbocysteine capsules to thin it+make easier to get up.he should see a respiratory physio who will teach him how to get it up.its the main self management technique.

That's enough for now.

Treat symptoms + learn about dad's conditions via aluk website,nhs & reputable websites..& here.

Hello to Yr dad x

[CDPO16]

Nothing to add to the good replies above, just wanted to say hi and welcome. Best wishes to you all.

[Alberta56]

Welcome to the forum. You need to stay in close contact with your dad's GP and find out what other help exists in your area. Has your father had Pulmonary Rehab? There were some pretty ill people on the course I went on. They seemed to find it helpful. Best wishes.

[Izb1]

2Hi AlexBenn and welcome to the site. You have been given some good information which I hope you find helpful. I joined the site when I first started suffering with bronchiectasis and it was the best thing I have done to get lots of information, along with support and a bit of fun on the way x

There is a helpline above if you need medical advice 0300 222 5800

[Lutontown]

I've had COPD for at least 20 years, in fact it was called CAO (chronic airways obstruction) when I was diagnosed. I was diagnosed with Bi-basal Bronchiectasis in Nov 2014, so I'v e been living with that for 9 years. In the years from 2013, I had many chest infections, 18 in 2017, but hardly any any since eradicating Black Mould from our home in April 2018. I believe my Bronchiectasis was caused by an infection which went on from end of March to November 2014, by a bug called Staphylloccus Aureus, (the SA bit in MRSA), which needed an intravenous AB to sort.

I'm on a number of medications which seem to be keeping my lung problems in check, so it need not be the end of the world for your dad. I hope he is being looked after by a good lung consultant at your local hospital. And check his home for mould which can grow wherever there is a water leak. So roof, kitchen and bathroom. Ours was in the bathroom under the bath and floor tiles, hiding away out of sight.

[Dottie11 in reply to Lutontown]

Agree re mold. On top it for last few months and really made a difference.

[Dottie11]

Pulmonary Rehab really will be helpful. My Pysio was wonderful. Taught me so much. The replies here already all great too. Welcome to a caring, helpful and very informative site. Some here have decades of knowledge priceless. Good luck.

[Yellowlung in reply to Dottie11]

I am looking for a good pulmonary rehab for my husband. He is diagnosed with ILD ,sarcoidosis and is with oxygen support . We have tried many physio. We live in Tamilnadu, India. Please suggest if you know anyone here

[Dottie11 in reply to Yellowlung]

Sorry I am in the UK. Good luck.

[Nula2]

Hi Alex 🙋‍♀️, welcome to this very supportive forum. As others have said you need a Bronch specialist & a CT scan. But what I've found most useful as I go along is all the suggestions and tips from the other members who live with Bronchiectasis. I am gradually learning that (for me anyway) the most important thing is self help, listening to (reading about) others experiences and working out what works best for you as it seems a very individual condition. Take care xxx

[leo60]

Hello Alex and welcome to you 😊 I can't add to all the great advice given already, I just wanted to wish you and your Dad well xx

[watergazer]

Hi and welcome. There will be some excellent advise on here. I hope your dad gets the help he needs. 🤗

[Numptybrain]

Hi

Welcome, my husband is my carer I have suffered spinal issues for many years and pneumonia and sepsis but I too have bronchiastasis after a long history of brittle asthma I’m now battling bilateral pleural effusion which is a totally different issue. You’ve been given some excellent advice here and as a cared for my health goes up and down I’ve been hospitalised a few times and been weak. I’m weak at the moment because of the fluid and must admit at times it gets me down but I always think people are worse off than me and move on. Your dad is probably feeling low, yet another diagnosis, it does affect you especially when we are getting older I’m only 61 but it definitely hit me especially what I’ve battled over the years and he’s probably feeling the same.

Take care

Wendy x

[Beth1949]

A lot of good advice.

Take a good look at his environment: air quality (buy an air purifier). Hidden mold. Stress (my health improved after I retired). Allergies to animals, certain foods, etc. Even small changes can make a difference.

I have had breathing issues for over 30 yrs. The worst: 25 yrs ago, I was put on a ventilator for a week, due to my lungs so full of mucus.

Since retiring and moving to an area with better air quality, my health has improved.

Don't lose hope, Beth (age 74)

[Biker88]

Any disease for which there is no cure such as emphysema(COPD) fits the category of palliative ( not to be confused with end of life) try and get a referral to a hospice. I have emphysema and Aspergillosis both incurable so I was referred to a hospice a few years ago and the support and advice is excellent. Hospice’s support both end of life and palliative and they in my experience are very helpful

[BionicLady]

Hello,

Welcome to the forum.

Just to begin by saying it definitely isn't easy caring for someone with Bronch so you are doing a brilliant job by even joining the forum and wanting to know more about the conditions your dad has.

I have lived with Bronch for a long time, maybe not as long as many on this forum, but over 20 years and counting. It is not the easiest condition to live with and can be so up and down and infections just take you by surprise, but it is about good self management.

Once your father has a more formal diagnoses for various scans etc, managing things will get easier.

Pulmonary Rehab classes can be very helpful for Copd so hopefully dad will get signed up to them soon.

I really wish your dad well with managing his health, yes, it can get one down day to day, but please say to dad it is not always like that and he must make the the best of the good days. Take good care.

[AsthmaandLung Administrator]

Hello Alex and a warm welcome to the forum.

You have come to the right place for support and information from our experienced members.

As Izb1 has mentioned, you are also welcome to call our helpline for advice. Call us on 0300 222 5800 to chat to one of our Clinical Team.

We are here Mon- Fri 9.15-5pm

asthmaandlung.org.uk/helpline

Take care

Helpline Team

[MozB]

Hi… welcome to this great forum. I’ve had bronchiectasis all my life after poor treatment for whooping cough as a baby that led to double pneumonia. Since then had an active life, plenty of exercise, good food and keeping slim. My recommendations are…

1) jump on all chest infections with antibiotics.

2) keep hydrated at all times especially during activities.

3) do chest clearance regularly.

4) take a mucus thinning med as prescribed… I use carbocystein… I used to take it only once, now taking morning and night.

5) seek the help of a specialist at local hospital.

6) get a smart watch and monitor “resting heart rate”. My goes up when I’m starting with an exacerbation. You can also monitor breathing rate, variability and blood ixigen levels.

7) get, keep active… keep lungs as clear as possible of mucus.

Hope some of this helps… all the very best.

Mozb