Bronchiectasis with frequent infections and exacerbations, help and advice will be much appreciated

Chest and lungs
1

Hi, my mother is 60 years of age and has been told she has bronchiectasis about 3 months ago, and less than 30% lung function left. For a long time (particularly the past 2 years) she has been getting frequent chest infections and been treated with 1 week courses of antibiotics and steriods. After finishing a course she would be ok for a week, by the end of that week her symptoms would return and she would need antibiotics and steriods again. Recently she was put on a 2 week course of antibiotics and steriods which did help at the time but now that she's finished them, her symptoms of breathlessness and chest tightness etc are returning. My concern is that my mum is unwell almost all of the time and only feels well when she is on these medicines and for a few days after they finish. Literally she is on antibiotics a week on and then a week off and now she's on them for a week and then not even a week passes by but she needs them again. I feel very sad for her and hate to see her struggle like this and I really want to do something to help her condition and improve her standard of life, by keeping these infections at bay, this is why I am on this forum, to seek advice on how I can help her or what medicines could be helpful and hopefully others can also benefit from the advice given in response to this message.

My mother has the following conditions:

Bronchiectasis (30% lung function)

Acute Kidney Injury stage 2 (30% kidney function)

Diabetes type 2

Servere Sleep Aponea

She is on the following medications:

Morning:

1 Aspirin Tablet 75mg

1 Diltiazem Capsule 60mg

1 Lansoprazole 30 mg

1 Glicazide Tablet

1 Adcal D3 Soluable Tablet 1500mg

Night:

1 Diltiazem Capsule 60mg

1 Lansoprazole 30mg

1 Pravastatin Tablet 40mg

1 Montelukast Tablet 10mg

1 Adcal D3 Soluable Tablet 1500mg

Inhalers:

Fostair Next Inhaler 100/6mg - Twice a day

Spiriva Inhaler - Once every morning

Salbutamol Inhaler- As and when needed

Other:

Fluticasone furoate 27.5mg Nasal Spray - twice daily

Carbocsteine - 1 three times a day

I will be very grateful for any advice, suggestions, tips, recommendations, natural remedies, or experiences shared. Thank you for reading my post and for your help in advance.

2

Yasminess,

Sorry to hear about your mum. There is help

out there in communities.

Your mum should ask for an appointment 

with a physio. They will show her some

breathing exercises she can do lying down or

sitting at a table.

Exercises will help her drain her lungs and 

she will have less infections. It will also

increase her lung capacity so she should

get higher than 30%.

Also, some patients take a low dose antibiotics

all the time. That was offered to me but I turned

it down. I'm lucky to only have mild bronchiectasis.

I do the breathing exercises once a day, a few times a week,

more if I have an infection.

I don't eat eggs or use milk. Those make my cough a lot worse.

Hope some of that helps.

I live in UK so that is where my knowledge is coming from.

Keep an eye on the press.

Clinical trials are beginning to to be 

run regarding Stem Cells and bronchiectasis. 

3

Hello Yasminess

I'm so sorry to see how unwell your mother is at the moment. My wife also suffered with very similar issues.  The main thing that seems to help is to keep the lungs as clear as possible by doing physiotheraphy every morning and evening. I notice that your mother is already on Carbicistine - this will thin the phlegm to make it easy to clear from the chest.

Some gentle exercise will also help, but I do appreciate that it is earier said than done. My best wishes to you and your mum. 

4

Hi. Is your mum seeing a specialist consultant? Presumably she did to get her diagnosis? Is the 30% lung function due to the B? I had experience of a GP not recognising the severity of what was happening. I had weekly AB's for about 8-10 weeks and ended up hospitalised. There is s lot of information on this discussion forum about treatments that others have had including longer term treatments of a specific anti biotic. I don't know the history but insist on specialist support if your mum needs it. Good luck

5

Your mum obviously has quite a few health issues as well as her bronchiectasis.  I am sorry to hear this.

As other posters have said the real secret to helping keep infections at bay and keeping the tubes clear of mucus is to do breathing exercises and clear the mucus from the lungs by proper physiotherapy.  Your mum would need to see a physiotherapist who could teach her how to do this.  It is really really helpful.

If she were referred to a proper respiratory specialist this would help too - bronchiectasis is a specialised illness and your normal GP can be very helpful (mine is) but a real expert knows exactly what would help the most.

My best wishes to your mum.

6

I have been using this forum for about a week and have received some valuable information.  One of the things mentioned is using manuka honey which is a natural antibiotic.  I just started it today.  I am hopeful that it will help me too.  It is expensive so consider asking more people on the forum before you buy it.  Also, there are people who take a low grade antibiotic all the time.  So that is an option if her doctor agrees. Blessings to you and your Mom.  It is so admirable for you to be so helpful to your Mom with her care.  You will be blessed for your love and attention to her. Keep up what you are doing by researching websites for more info and most of all, give your Mom lots of hope and love that only a daughter can give.   

 

7

Hi Haydon,

Thank you for you reply. My mum has been refered for physio, we look forward to hearing from them. It will be good for her to learn these exercises and try to clear her lungs. I am happy to hear that it is working for you. Also, my mum was told she has mild bronchiectasis, although her infections are so frequent? We also live in the UK, Birmingham. If you don't mind me asking, why did you turn regular lose doses of antibiotics? As I think this maybe what my mum needs but not aware of all the side effects it may have. Thank you for your time, positivity and advice.

Yasmin

8

Hello Sparkright,

Thank you for your reply. I'm sorry to hear your wife suffered from similar problems. My mum isn't very good at taking the Carbicistine, but I will encourage her and try to ensure that she does. My mum has been refered to physio, hopefully soon she will learn the exercises amd will be able to do them. Thank you for your advice and understanding.

Yasmin

9

Hi Johnboy1954,

My mum is seeing a respiratory consultant who stated it looks like she has mild bronchiectasis, however he did not say if her 30% lung function was caused by B or anything about how much lung function she has. Many many years ago mum was told she had COPD and was put on montelukast and new inhalers. However it was only last year, when she ended up in hospital and was then followed up as an outpatient for a while that she was told she has 30% lung function. I do know that my mum was unable complete all the lung function tests that she was sent for by her current consultant so they had do go by the few tests that she could do before getting too breathless. Also as my mum is supposed to have mild B, and she is this bad, I am worried how bad things could be if it progressed from mild.

I can understand you experience of the GP not recognising the severity of what was happening as my mum too...kept seeing her GP over and over and given antibiotics after antibiotics. I had to voice my concerns and then a referal was made. Thank you for you advice, you are right, the discussion forums contain alot of beneficial information. Take care.

Yasmin

10

Hi Operalyn,

Thank you for your reply. My mum has been referred for physio and I hope to hear from them soon, so she can learn the exercises and benefit from them. It is nice to hear so much positive feedback about these exercises. Also my mum is under a respiratory specialist, who we will meet again in a few months. Thank you for your time and advice. Take care.

Yasmin

11

Hello Mary Ann 0313

Thank you for your reply, your kind words, support and lovely advice. I have heard about Manuka honey and that it helps the immune system, which is very important for preventing/ tackling infections. I did purchase some for my mum, but as she is diabetic she takes it occassionaly, a teaspoon mixed into a cup of warm water. But thank you so much for suggesting it..and reminding me about it. I will be sure to get her started back on it. I also got her some nigella sativa oil/ black seed oil after hearing about all its great benefits...but as it tastes so strong my mum only takes less than a teaspoon occassionally with a drop of manuka honey. I also took it for a while for over all general good health and I did feel like I had more energy and an overall feeling of wellness...I must to start taking it again! I hope you continue taking Manuka honey and reap all its benefits.

I hope to speak to the consultant about low grade antibiotics at the next appointment, I hope it will work for my mum as it has for others. Thank you for your encouragement to help my mother, I believe it is my duty to and there is nothing in this world I would want to do more than to be dutiful to my mum, for she did raise me up when I was small and what a wonderful mother my mother is, she is a true blessing as are all mothers and I am so grateful for everyday I have with her. I do have my shortcomings, I appreciate your encouragement and for reminding me how important showing love and support. I hope that you are surrounded by love and support. Your positivity and kindness shines through. Thank you.

Yasmin

12

Hi, I am 72 years old and suffer from longstanding bronchiectasis which has gone through many stages over the years.

To keep well I have found that the right medication, postural drainage daily, good diet and healthy lifestyle is what is needed to keep well. Also a visit to a Chest Clinic to keep the condition monitered.

When you have severe bronchiectasis you need daily medication to help keep infections away not just when the infection starts.

I am sure that when your mother gets in a routine of daily postural drainage and medication she will feel much better and will have a better quality of life.

I wish her well, Stella.

13

Postural drainage is the only way Stella. I have other help but if I miss my PD it's just hopeless. I am 68 and I have been doing it since I was 4 except for a few years in my teens when I was rebelling! I became quite ill so back to basics! They don't seem to automatically teach it now. A pity.

14

Postural drainage? Is this different from chest physio breathing exercises?

Thank you

John

15

Yes, PD is the key to this condition. As you know it is not a good feeling if it is not done daily.

Thanks for your reply, Stella

16

One of the main methods that helped me at the beginning was the physiotherapy, the amount of mucus that is shifted following the first few treatments is significant and you feel the benefits straight away. Before I went I had lost 3 stone and weight and had no energy, and mainly lay in bed. Knowing that there are others with this illness helped my mental health as well. I'm 24 and have had Bronchiectasis for 7 years, apart from a brief 30-40 minutes of slight coughing in the morning i have no problems during the day, I have also only had 1 chest infection in those 7 years and i genuinely believe it is because of physio. Another thing to possibly get checked is the sinus, I had quite bad post nasal drip from the area which contributed to my cough at the beginning.

I hope this helps and I hope your mother gets better.

17

Hi Stella,

I hope you are well, thank you for your advice. My mum was assessed for physio recently and should be starting classes in two weeks time..and hopefully they will teach my mum about postural drainage...is postural drainage the same as breathing exercises that help clear the lungs? Thank you for suggesting it...I'm am going do some online research on postural drainage now and also ask about it when my mum starts physio.

I'm happy to hear that postural drainage combined with healthly eating and lifestyle is helping you manage bronchiectasis at different stages. I admire your will power, well done, keep at it and stay positive. My mum does try to maintain a good balanced diet but doesn't really have a good appetite but despite this...all the meds she takes make her put on weight even though she doesn't eat much. Take care.

Yasmin

18

Hi John,

I'm not sure if it the same...but I'm going to read up on it and will get back to you.

Yasmin

19

Hi Gsoal92,

Thank you for your response. I'm happy to hear how well you are doing at keeping those infections at bay...1 in 7 years is amazing! I look forward to my mum being able to do them soon, she starts physio classes in 2 weeks time so hopefully she will learn these exercises soon. I'm suprised at how young you are, stay positive, keep doing what your doing and continue looking after your health.

My mum use to have really bad sinus problems...her nose was badly blocked but once she started using the CPAP machine for her sleep apnoea her sinuses also cleared up somehow. Thank you for suggesting this though.

Yasmin

20

I have checked on You Tube and it seems to me that Postural drainage is the massage that is done by a therapist with cupped hands. It causes the patient to cough after this session. I have been told about this, but didn't understand what it was until I watched the video.  It is a specialized masseuse who does it.  Not just any massage therapist can do it. I doubt that my insurance will cover it. If it becomes necessary for me, I will do what Beth is doing and that is invest in a percussion vest. I checked on the price online and it is very expensive.....$6000.  However, if you pay $100 an hour for a massage, the vest would be paid for in almost a year at one time per week. If you need it every day, then it is paid for in two months. It makes sense to look into the percussion vest. I am not sure, but I think it is all about what stage of your disease and how necessary it is. Blessings to all of you suffer with this disease.  It is not easy and I feel discouraged at times that my golden years are not so golden. On the bright side, we are much better off than the people who had it 10 years ago.  Research is coming up with better gadgets for us and we have the internet to converse with others who are in the same predicament. I am blessed to have found friends here who encourage me with more info and better suggestions than I have gotten from my doctor.  This is what this blog is all about....helping others to cope and make life more comfortable.  God bless you. 

I want to take this moment to say thank you to the people who give us this opportunity via this website.  THANK YOU for your caring for those who are hurting with various illnesses. 

Mary Ann