Don't know what else to do .

[coughleigh]

Well I went to my chest nurse on Thursday and after looking at my notes she went into my Dr and came back with a prescription for a HandiHaler and Spiriva 18 micrograms.I went to see my Dr on Thursday to ask him if he could get in touch with the chest specialist as each time I phone the hospital I am told "no appointments".Well from my smiling happy Dr he changed.He said "He could only refer me,after that it was up to our hospital to contact me"so I am back to square one again.I told him the acid reflux was so bad so he said he will refer me to the hospital for a tube down my throat and to go back to him at the surgery for a C UREAbreath test.Now Flibberti had sent me the link to the most comprehensive leaflet on Bronchiectasis I have read.It said acid reflux is a symptom of Bronchiectasis .But he says not.I know by what I have been advised on our forum and the leaflet he is wrong.I just do not know what to do next ?My granddaughter came with me, as my hubby is not to well and our daughter had an a hospital appointment about her type 1diabetes which she has had since her teens.But she phoned me yesterday and is furious with my Dr.I think a lot of my family's worry about me stems from our son constantly being fed with antibiotics and no follow up to him dying of cancer 5 weeks after finally being sent for tests .I asked him about antibiotics and was told I had no need for them.The Spiriva ha defiantly helped my breathing as it has loosened the mucus but I still cannot get any up.What else can I say ? mags x

[sassy59]

Oh bless you Mags, what a lot of upset you are going through. Doctors do not know everything about everything though some seem to think they do. It must be so hard for you especially after your sad loss. You need to be seen by someone who can help so maybe you could contact the BLF nurses and see if they can help. Just click on the red balloon and they should be able to offer some good advice and support.

I really do feel for you and hope that you get the care you need very soon. Don't leave things but keep on and on. That is what I have to do on behalf of my hubby who has all sorts of health issues.

Let us know how you get on and good luck to you. Hope your hubby gets well very soon. Take care. xxxx

[Offcut]

youtube.com/watch?v=8N_S_-7...(Not working as expected?)

Is a good way of moving a removing that pesky mucus.

youtube.com/watch?v=kC-H8fF...(Not working as expected?)

another one here. UK based

[soulsaver]

Heart burn is not a symptom per se of bronc - but is common in people with bronc (or any obstructive lung issues) because when the lungs over inflate they put pressure on the stomach and force stomach acid through a weak sphincter, especiallly when lying down.

If you think you have reflux/ heartburn you could buy Ranitidine, it's over the counter and cheap and it is often prescribed for people who don't tolerate Omeprazole... which would be the usual prescription. If it works for you get the dr to put it on prescription if you get it free, or ask for omeprazole (proton pump inhibitor). DO NOT take both.

Best wishes

[stillmovin]

Hi coughleigh, I didn't see your posts on this until flibberti kindly referred them to me as I too have bronchiectasis and COPD and acid reflux and maybe I could share something from my own perspective, as everyone on this forum does. It may be a long one, so go get a cuppa tea first...

I got acid reflux before I was diagnosed with bronchiectasis. I had an endoscopy and two tests where ph monitoring was done by putting tubes down my nose into my stomach! Small hiatal hernia and 'functional' acid reflux disease or GORD (GERD). I had it so severely that I lost 2 stone in 3 months and I went down to 7 stone. I was prescribed different Proton Pump Inhibitor tablets and finally settled with 30 mg of OMEPRAZOLE a day. I still can't eat a lot of trigger foods (dairy, fats, fruit, tomatoes, alcohol, etc) and still am only 7 and a half stone but at least I sleep better. Anyway, the bronchiectasis showed up accidentally on a CT scan after that and the chest consultant felt that I was breathing acid into my airways from my acid reflux problem. There is also a link with bronchiectasis and Ehlers Danlos Syndrome which I also have. So, it is essential that you see the Gastroenterologist and he prescribes you a suitable Proton Pump Inhibitor tablet. I don't know of acid reflux being a symptom of bronchiectasis. In my case the GERD came first.

I also was recently diagnosed with COPD in part of my lung, so bronchiectasis can exist alongside other respiratory conditions (i.e. asthma, as in your own case). They are two different styles of airway change, as you already know...

Regarding getting mucus up, yes, that is difficult. I know it well, especially in the cooler, wetter months of the year. I have tried Mucodyne tablets which have helped a lot of people so you can give those a try. In my case, they just didn't work. I tried a saltpipe and then a Flutter device. Neither have helped. Then I discovered that if I simply lie on my back, without a pillow, I sometimes start to cough up phlegm! Everyone has their own way of getting phlegm up. I went to a chest physio at the hospital for a couple of sessions and she showed me how to do huffing exercises (forced expiration exercises) to do every day. I did these a lot but sometimes they don't work at all for me. Sometimes it just doesn't budge for weeks and that is usually in the winter when my nose runs a bit and I am out and about in the cold. That's when the real problems start with exacerbations. I now have an emergency supply of antibiotics from the GP for when I think I am getting the start of an infection. That gives me time to get an appointment with the doctor and to bring him a sample of mucus (he has given me a couple of sample bottles) so that he can send them off to the lab for tests to see what the exact bug is (sometimes there is no infection at all). The GP can then provide me with the correct antibiotics if needs be and renew my emergency supply kit too.

I take Spiriva (18 mg) (it is to PREVENT inflammation rather than to treat it) and Serevent 50 mcg accuhaler (non-steroid). I tried Symbicort for a week and had bad effects from the steroid so went back onto Serevent). You keep trying to see what you think helps you. That's all you can do. Whatever doesn't cause me bad side-effects, I just stick to. Also, I am assuming you get a yearly flu jab and have had a pneumonia jab at the GP surgery.

I have started to do more walking and have put my name down for attending a pulmonary rehabilitation programme but there is a very long waiting list. I asked my GP to refer me to the local respiratory nurse and had an appt. with her once. She was fine but really didn't do anything extra to what the GP and consultant were already providing, and she didn't offer any regular assistance. Some areas are just overloaded with patients.

As for the trouble you are having with getting an appointment to see a consultant, this varies a lot. I have been waiting nearly 6 months to see another Gastroenterologist about having another endoscopy done to check the progress of my acid reflux disease and this is despite chasing up the appointments number I was given for the hospital quite a few times. They genuinely don't have the appointments available but will respond to you when one comes up. However, in the case of the Respiratory Consultant at another hospital, I didn't wait long at all. However, they discharged me after only a few sessions. I then had to go back to my GP to be referred to another hospital. It is just how the system goes unfortunately. I have had to push and push to get appointments with consultants over the years and I am well used to it. It has sometimes been the same with the GP surgery.

Stress and anxiety play a major role in the onset of acid reflux disease, and anxiety just reinforces chest exacerbations and breathing problems too (and sleep). Do you notice that when you feel relaxed and happy about life and yourself in general, your symptoms aren't as bad as when as you have a black cloud of fear having over your head? It is rare, but I have noticed it now and then. Let's try to work on that side too!!!!!

Take care

stillmovin1

[soulsaver]

The data sheet on Omeprazole says do not take with any other antacids/indigestion tablets, so.. I wouldn't advise anyone going against the manufacturers instructions without their own GP's knowledge/approval.

[Maximonkey]

Hi Coughleigh, I sympathise, however, GP's no longer do all the chasing of Consultants. Sometimes we have to help ourselves. I always found it helped to phone the Consultants secretary and tell her you need help (tell her the problem). I was always given advice and a quick appointment. If you do not know the secretary's name, call the hospital and they will give the name and telephone number to you. Don't be surprised if it is not the same hospital, many Consultants work out of several hospitals and their secretary's office could be anywhere. Good luck and take care of yourself and do not give up. Maximonkey

[coughleigh]

Hi all,Thank you for your advice.I see maximally and stillmoving1 what a hard time you both had.Having the good fortune of having been healthy most of my life apart from TB when I was very young I didn't have a clue what the system is like until our son died 4 years ago from cancer due to his Drs negligence.I was happy with the Spiriva as it helped my breathing a lot.Before I was put on it I could hardly walk from the kitchen to the living room ,but I felt different almost soon after taking my first dose of Spiriva .Of course I paid the price as I done a lot of things I hadn't been able to do before.But it certainly does help my breathing but I am finding now that I have developed a bad cough and sore throat and I think I might be slightly allergic to it.But I will persist with it.Also I gave up my brown puffer and I find the acid reflux has decreased so much.I see my respiratory nurse next week ,she is the nurse I see for my asthma and she is great.It was her who went into my Dr and got a prescription for the Spiriva for me.As you both say It is up to me now to chase up my appointment with a chest specialist.I did ask about antibiotics but he said no ,only if I get another chest infection,and seeing as I have had 4 since christmas WELL.So like everyone else I will plod on and help myself.this forum is so helpful and I have learned so much,offcut bless him even posted breathing videos for me and flibberti sent me a fantastic link to a leaflet on Bronchiectasis.I am so glad I found this forum as not only have I learned so much I have laughed a lot as well. mags x

[andmikel]

I find spiriva a great boon but having had a couple of heavy anaesthetics for procedures last month my peak flow went down 25% and i was very breathless and congested. I found that inhaling the steam from boiling water with a drop of tree oil in it 3 or 4 times a day, vire a facemask attached to a cup like a babies with a lid on and taking chesty cough medicine as per instructions and walking for an hour a or so each morning has helped. Keeping moving regularly and being vertical is more helpful than sitting still or laying down for long periods. Keeps the circulation going. After 3 weeks I am now within 10% of my previous peak flow. Sucking menthol sweets also helps - in moderation and with regular deep breaths.

[coughleigh]

Hi andmike I like you use tea tree as well.Great stuff.Wish I could walk for an hour or so but can't.Thank you for the advise mags