Bronchietasis/LPR nightmare! - Lung Conditions C...

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Bronchietasis/LPR nightmare!

Helroo profile image
6 Replies

I'm new to this . Read my profile . I have multiple issues with lack of knowledge of consultants ? I have bronchiectasis. .

I have laryngeal pharyngeal reflux. ongoing approx 2 yrs.

I am soon to have high risk surgery (fundoplication) It will stop reflux if successful. Intensive care post op etc.

2 yrs is too long to wait to be listened to. My life is consumed with Meds...news...nausea....and the knowledge of the damage this is doing is scary!! I have done some research as I'm sure so many have.

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Helroo
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astragal profile image
astragal

Good morning Helroo

I have bronchiectasis also diagnosed 3 years ago, the LPR first appeared 5 years ago.

It took me a couple of years to get a diagnosis. None of the conventional medication worked, Omeprazole, Lansoprazole, Ranitidine etc.

Although Gaviscon advance does help a bit.

Ironically I follow a vegetarian, ‘ healthy’ diet. I was eating loads of berries, oranges, tomatoes......which was fairly acidic. So I researched online and came across information from 2 American doctors who specialises in Lpr.

Dr Jamie Koufman, Dropping Acid diet and Dr Jonathan Aviv, Acid watcher diet. Basically they advise an alkaline diet, low fat, no acidic foods like citrus, tomatoes,onions, garlic, chocolate, caffeine and berries in the induction phase which lasts a month. Foods like green vegetables, carrots, potatoes are okay, fruit is limited to bananas and melon initially, then apples and pears if reflux settles.

If dairy is tolerated, low fat milk, cottage cheese etc

Lean chicken and fish are fine.

No chocolate, alcohol ,rich , spicy or fatty foods,.... so Christmas is a testing time.

It is bland I suppose, but it helped me a lot. I was choking, coughing constantly, bringing up mucus, then blood, throat hurt, throat felt like it was tight and as thought it had a lump in it. Waking in the night choking....

Now thankfully it is generally manageable, although antibiotics and other meds can set it off.

Koufman has over 25 years experience in lpr treatment, in fact they say she was the one who coined the term Lpr.

The books are available on Amazon and other good book stores.....recipes etc are included.

I also use a wedge pillow which helps and don’t eat or drink 4 hours before bed.

They wouldn’t consider me for surgery due to the state my body is in.

There are other procedures as you may well know, the Linx , which is an expandable metal ‘bracelet’ which goes round the lower esophageal sphincter.

Also the Stretta, this is non invasive as no surgery, they use radio frequently to treat it, in through the mouth.

It is very frustrating and I do firmly believe that is what at the very least contributed to my Lpr, I found my doctors hadn’t heard of it.

Other things I find help, chewing non mint gum, as mint can cause a reaction. I have cinnamon gum which works well. There are a few companies on Amazon that offer alternative flavours.

Some reckon manuka honey helps. I take that anyway for its healing properties.

I hope that helps and that you find things that work for you.

Very best wishes for a good Christmas.

Blackcat99 profile image
Blackcat99 in reply to astragal

Many thanks for that very useful advice, Astragal. I have very, very mild issues of this sort, esp lump in throat when starting to eat, but had no idea that it might be linked to bronchiectasis (although, as it turns out, almost everything that is going wrong with me nowadays IS linked to it!)

Like you, I'm (almost) veggie, although I still eat fish, and you've given me a good plan to try to avoid any worsening of condition, thanks.

Helroo, I'm so sorry that you're having such a bad time and, yes, it is infuriating when professionals don't always seem to understand the patient's desperate need to prevent things from getting worse (although they've already told us that that damage is irreversible) Feel free to use this forum to vent that anger and frustration - you'll be talking to people who understand.

Good luck to both of you, and all best wishes for 2020!

Hi Helroo, I have been looking at the fundoplication procedure. I can see that it is a six weeks recovery time and I am concerned as to how, during this time, you are going to manage your bronchiectasis by emptying your lungs without the force of the coughing affecting your healing site.

I suggest that you ensure that your gastro team and your bronch consultant liaise on this. Maybe your consultant’s physio can give you some tecniques so that you can expel the mucus in a more gentle way. It is essential that you do continue to get rid of the mucus in your lungs to avoid infection setting up in there.

Good luck with the procedure. You must be pretty desperate to resort to such a drastic measure.

Helroo profile image
Helroo in reply to

Yeh , My reflux is severe .sinusitus,earache,asthma.throat burning. Night. Cough, Eating is a nightmare. I I am nauseas .throat clearing. I

Aspiration is likely. I coped well with bronchietasis . My crespiratory consultant referred e to surgeon . It's not without high risk but I have no choice. Without this surgery my lungs would not hold up for long. I will need intensive care and will have expert post surgery team.

I have had vigorous pre assessment tests including exercise/cycling/lung function/ bloods.

I am scared ! had lung surgery b4 too .If successful it will give me my life back tho .What would you do.

in reply to Helroo

I hope it goes well for you.

ssafa profile image
ssafa

Hi sounds like you are in a bit of a pickle, I also suffer or should I suffered from acid reflux. I do take Lansoprazole but more important I believe is what how and when we eat. I can follow advice about drinking bottles of Gaviscon (which I don't like) but I made a conscious effort to identify triggers and keep clear from sweet stuff and chocolate. Mt diet has changed and I am much better for it as is my fitting in my clothing. Hope you have a good Christmas and the New Year finds you in a better place.

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