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Bronchiectasis oxygen therapy

Ganesdh profile image
30 Replies

Is there any harm in using oxygen 24/7 at 3 litre from a concentrator. I am told it will make lungs to work less and they will retain CO2. I have end stage bronchiectasis with multiple cystic cavity on all my lobes. I am 44 and my doctor advised me a transplant which at present is not possible due my very low body weight of 35 kg for a 6 feet man.

Please advice me friends. I feel better on oxygen than bipap which is very difficult to fit and also dries out my sinuses.

Thanks a lot

30 Replies
CDPO16 profile image
CDPO16

I think you would be best to follow the advice you have already been given. Co2 retention is potentially dangerous. Some forum members use bipap and maybe one will see your post and be able to help with the problems you are having.

I am sorry about the situation you find yourself in with regard to transplant. Best wishes.

Ganesdh profile image
Ganesdh in reply to CDPO16

Thanks a lot CDP . my saturation without oxygen was 88-90 and I feel a better with oxygen. My bipap makes me feel very difficult to breathe and my pulmonologist never bothers to check why it is causing me trouble. I am thinking of changing my hospital once I gain some strength.

Patk1 profile image
Patk1 in reply to Ganesdh

Do u not have ventilation nurse specialist? Do email or ring thm direct( tel no shld b in information pack x

Ganesdh profile image
Ganesdh in reply to Patk1

Yes I must call a respiratory therapist. They may help. Thanks once again

ralu79 profile image
ralu79 in reply to Ganesdh

You should talk to your consultant, about the Bipap. I have Bipap for a year and a half. Before this, the CO2 put me into coma. The respiratory nurses from your consultant must change the pressure of the Bipap until you can wear it. My nurse changed it after I called her because the pressure was too high, she changed it from the hospital, which is 40 miles away.

The Bipap also makes miracles with your general fitness, hands stop shaking, you are stronger and you’ll need less oxygen, maybe you’ll start even gain weight. The Bipap is not easy, but if you want to live better, even if we don’t know long we have left, use the Bipap at night, conected to oxygen. I am doing it, I was able to move from oxygen use 24/7 to 14 hours a day at present. I’ll help you with info or any other questions. I should say also that my total lung capacity is 24%, for all my life.

Ganesdh profile image
Ganesdh in reply to ralu79

Thanks a lot Ralu

I am on 1.5 litres oxygen now and not retaining carbon dioxide. But could not walk for even a short distance due to my very low body weight of 35kg.

My asthma is triggered by everything like even taking a head shower or shaving my face.

My pulmonologist is not interested in my complaints

because medically they are not a disease.

So with uncontrolled asthma and bronchiectasis

I am struggling everyday. Hope I an find another good pulmonologist who can find a cure.

ralu79 profile image
ralu79 in reply to Ganesdh

We have the right to a second or even fifth opinion. How can your problems not interest the consultant? Well, don’t wait for them to care. I also have bronchiectasis. A year ago I couldn’t walk a few metres with oxygen on. I forced myself to breathing exercises and they are amazing, not immediately. Take Raw Vitamin C capsule, eat lots of proteins and fruit squeezed, don’t give up and try to move a little, day by day one more step.

You can make online complaints about your consultant, but ask the GP a new referral for a second opinion for a consultant.

Ganesdh profile image
Ganesdh in reply to ralu79

Thanks once again Ralu for your kind reply

I have met a alternate medical system doctor and he diagnosed my condition as histamine intolerance and mast cell activation disorder. I am currently unable to visit him due to my nearly bedridden condition and COVID. Now the COVID is over and I may get appointment with him.

His diagnosis was not accepted by pulmonologist and he says he cannot prescribe treatment for diseases found by other medical systems. He is correct but as a disease sufferer it is not the reply we want from a well trained pulmonologist.

Anyway let me see whether the alternate medical cure works for me.

Kristicats profile image
Kristicats

Oxygen needs to be prescribed by your doctor so you’d be best asking them.

Ganesdh profile image
Ganesdh in reply to Kristicats

Thanks Kristie. He has prescribed bipap which is causing me a lot of trouble by drying out my nose and mouth and also making my lungs clearance impossible till it is removed.I am feeling a bit better with oxygen alone. But must quickly find another consultant pulmonologist

gingermusic profile image
gingermusic

I also suffer from Bronchiectasis and I am prescribed oxygen 24/7 but at 2 ltr not 3 like yourself and I am fine with it. Check with your consultant or hospital though as we are all different

Ganesdh profile image
Ganesdh in reply to gingermusic

Thanks gingermusic

I was actually discharged from hospital last month with a oxygen cylinder at 1.5 in a ambulance. The paramedic said that 1.5 in cylinder must be 3 litre in a concentrator. Anyway I try reducing my level to 2 and see it is enough.

Delamere profile image
Delamere

Hi l have severe bronchiectasis and asthma along with colonised pseudomonas. I am on 5lts oxygen 24/7 at the moment after a flare up course of iv antibiotics l am normally on 4ltrs . I find that if l take things slowly l can still do most tasks without the oxygen it would be impossible for me

Ganesdh profile image
Ganesdh in reply to Delamere

Thanks Delamere

With oxygen life is lot easier than bipap. I think your oxygen requirement vill reduce once the infection subsides. But with such difficult disease like severe bronchiectasis every cold and flu scares us like COVID.I will also try doing things slowly and hope live for some more time for the sake of our loved ones.

Patk1 profile image
Patk1 in reply to Ganesdh

Yes,every hint of a bug drops straight into lungs+ turns to infection.it is v hard for us,as mucous burden increases 🙄😰

NUTZ2140 profile image
NUTZ2140

Hello, I'm on oxygen 24/7 and have just had problems with my carbon dioxide levels being high, so they have turned my oxygen down to 1 and a half. I'm fine on that, maybe just a bit slower but my carbo levels are right down thank goodness.😀

Ganesdh profile image
Ganesdh in reply to NUTZ2140

Thanks Nutz2140. I also feel a lot better on oxygen for past one month. One month back I had a bronchoscopy done and my anaesthesia was messed up landing me in icu for 3 days with non invasive ventilation and bipap. I had deep injuries all over my nose ear and forehead because of bipap. Once I woke up I could understand that bipap has totally dried out my sinuses and mouth and I could not talk for half an hour after its removal. Then they used the nebulizer with oxygen and I felt immediately better. I told them about it and also my carbon dioxide levels were coming down better on oxygen with nebulizer. But they persisted upon bipap and I felt very difficult till my voluntary discharge. I must now do my abg test so that some clear info about CO2 is got.

Brenda56 profile image
Brenda56 in reply to NUTZ2140

Thanks for that my oxygen nurse has not suggested that instead sending me for nippy 🤔

Caspiana profile image
Caspiana

This is advice Ganesdh, that cannot be offered by lay people without the worry of causing harm. CO2 retention is very dangerous and without really being aware you could be slowly poisoning yourself. I was also a retainer and could go no higher than 2 LPM. However my friend who is end stage COPD cannot have oxygen at all according to his consultant. So you see everyone is different. One of your goals now is to gain weight. You cannot be listed with such a low BMI. Has your doctor arranged for you to see a nutritionist? There are ways and means of receiving nutrition nowadays including use of a short term feeding tube.

I am sorry for your plight because I understand so well the reassurance oxygen usage brings. Many transplant patients still need oxygen after transplant even if their transplanted lungs work well because they have become dependent on oxygen for years and panic without it. Even with saturations of 99 percent ! But they eventually come off it slowly.

Please let us know how things go.

Cas 👋🙂

Ganesdh profile image
Ganesdh in reply to Caspiana

Thanks Caspiana

Very good suggestion. Feeding tube is very difficult with bronchiectasis. I will ask if any other method is available with my nutritionist. Also I am planning to have a Abg blood test so that some information is got about my current gas levels. Thanks once again.

Caspiana profile image
Caspiana in reply to Ganesdh

Very good to be checking your gas levels Ganesdh. I really wish you well and hope things improve. xx 🌿

Ganesdh profile image
Ganesdh in reply to Caspiana

Thanks a lot once again.

Izb1 profile image
Izb1

You really need to speak with your consultant regarding this and cannot decide for yourself, it could be dangerous. I wish you well and hope that you can find something that will help x

Ganesdh profile image
Ganesdh in reply to Izb1

Thanks lzb1.

I will ask my new consultant definitely about this. Hope he can understand my problem and provide a solution.

Patk1 profile image
Patk1

Im on Nov bipap.mask can b hard to fit but it prevents c02 retention.id persevere. Id be wary of using 02 more than prescribed.do speak to yr care provider

Ganesdh profile image
Ganesdh in reply to Patk1

Thanks Patk using bipap causes nose, sinus and mouth dry out so much that I cannot eat anything for 30 minutes after its removal. May be the mask not fitting me and air leak occurs. Also mucus collects in lungs due to bronchiectasis which is very difficult to bring out after bipap. I will definitely ask my new doctor about all this.

Patk1 profile image
Patk1 in reply to Ganesdh

I've bronchiectasis too.ru on carbocysteine to thin mucous? I wake ea cpl hrs so clear chest,have a drink etc ea time.masks r awkward at times both with fit + leaks but feel so much better whn wear it.could u perhaps put on for periods in day to get used to it and adjust fit? X

Ganesdh profile image
Ganesdh in reply to Patk1

Thanks PatkAlso the bipap settings needs to be adjusted. For me it appears they have made a wrong one. It just blasts air like a storm.

Patk1 profile image
Patk1 in reply to Ganesdh

Crikey.do ring them.my settings r high but once fastened on,no really aware of it.i hope u get it dealt with x

Ganesdh profile image
Ganesdh in reply to Patk1

Thanks Patk I will definitely try

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