salt pipes, are they any good for bronchiectasis
Posted , 5 users are following.
hello, as I have lost faith in my GPs advice/help with this dreaded bronchiectasis (combined with asthma) I am seeking advice on devices for self help, todays product that I have just found out about is a salt pipe, never heard of it until today! but spoke to a friend who has 5-6 weeks of using one, and he swears by it, he has a copd thing going but not bronchiectasis, has anybody out there tried it? thanks in anticipation
0 likes, 20 replies
cofalot david_25160
Posted
cx
chriselora4321 cofalot
Posted
Thanks.
Chriselora.
cofalot chriselora4321
Posted
Isotonic saline 0.9% nebbed is the same salt content as body fluids but some find it helpful. It comes in 2.5ml ampules.
Hypertonic saline nebbed comes in 3%, 6% or 7%. I use the 7% which comes in 4ml ampules.
My consultant arranged for me to have a nebuliser on permanent loan and I believe the hypertonic is usually a hospital directive.
I use it twice a day when I do my physio. Nebulise a bronchodilator first - then hypertonic saline - then physio, and if I am on my month of nebulising Tobramycin I would neb it after physio. If my asthma is playing up I would use the 0.9% saline as the higher salt content in hypertonic can then be an irritant.
cx
Kathleen1952 cofalot
Posted
chriselora4321 cofalot
Posted
I have asthma and have my inhaler Budesonide, I use morning and night . ( Terbutaline if needed also ) I've recently been diagnosed with bronchiectasis in April this year and just trying to get used to dealing with it as well.
My consultant has given me a nebuliser on permanent loan. I use the isotonic saline 0.9% 2.5 ml ampoules twice a day.
I had also heard the salt pipe is not suitable for everyone.
Thanks again.
Chriselora.
cofalot chriselora4321
Posted
You don't mention physio. I assume your consultant referred you to a respiratory physio, if not please ask him/her to do so. Some find gadgets help e.g. flutter - acapella.
Any queations don't hesitate to ask - there will always be someone around.
cofalot
Posted
chriselora4321 cofalot
Posted
It's the lower lobes in both lungs which are affected and was told a flutter device would not suit me because of that.
However, I have been reading about a lung flute which uses air pressure to vibrate the lungs and help break up and expel the mucus. Unfortunately it's available everywhere but the UK for some reason. I'm going to ask my doctor about it. I'm willing to try anything that may help clear my lungs .
Thank you for your advice, very much appreciated. I think people know what will help them more often through experience, than what the medical profession say.
cofalot chriselora4321
Posted
Wonder if the acapella choice would be of any help to you. A dear friend of mine from another site told me about the lung flute. You can get it from USA but it is cheaper to get it from Germany. She was ordering a few at a discound and very kindly ordered me one, not only that her lovely hubby carved me a thingy to drag a clean cloth through to dry it. I do use it occasionally but find the reeds get wet after about 3 blows. My friend however, swares by it and uses it most of the time. We are all different and that's why we need to be referred, although some physios will push their particular preference, whereas I feel it should be the patient's preference which matters - they're the ones who are going to have to do it.
Hope you get sorted.
cx
Kathleen1952 cofalot
Posted
Good luck kath
chriselora4321 cofalot
Posted
I also have an appointment with my GP next week and will ask about it then.
Each consultant/doctor has their own preferences, but as you say, at the end of the day it should really be the patient's preferences which should matter.
I'm always interested to learn what people find works best for them regarding treatment and clearing techniques and the important questions to ask consultants and doctors.
Cross fingers I get things sorted out asap.
cofalot Kathleen1952
Posted
We used to have physio in 5* 2 or 3 times a day. Now a physio will come along once during your stay. The last one (who looked like he was on work experience and might well have been for what use he was). My temp was high and spiking and my sats were very low for me. He did not mention physio but asked if I wanted to go home. I heard him tellig the con he thought the right side which was painful would only take a few coughs to clear DOH! The con on duty told him no no I believe there is much more down there to come up. When I saw my own con I mentioned the lack of phyio whilst being an inpatient and explained about this physio. I told him I would only discuss my discharge with my consultant or his registrar and it was not in the physios remit. He agreed. He has set a lot of stuff in place but as a patient you see where it is not always being followed. He though it a good idea for us to have a meeting to discuss things from a patient's perspective. He's a very busy guy however, so am not confident it will ever happen.
cx
cofalot chriselora4321
Posted
cx
chriselora4321 cofalot
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Sometimes I get conflicting advice from consultants and GP's.
My GP talked about postural drainage and percussion but only gave a brief demo.
The consultant, on the other hand told me it was old hat and it's better doing a type of breathing technique several times a day instead. A hospital respiratory nurse showed me how to do it afterwards.
No wonder, I and other people get confused if the medical profession can't agree on treatment and procedure.*Sigh*
Kathleen1952 cofalot
Posted
all i can say is you might have to fight for it i just feel so lucky that i have a consultant and gp who work together and a dedicated physio on his team who deals with his cases he listens to what i have to say so does my gp and i have very good relationship with all 3 of them but i have never been one not to challenge a consultant as i used to work in the nhs they have now found i am borderline anaemic which can effect the breathing so straight away my gp has arranged further blood tests to determine why so i can get treatment if needed this is the way the nhs is supposed to run my consultant is a bit younger than some so he his not set in the old ways
i hope you can find better treatment for this condition we all deserve it i also have a chronice disease review yearly with a specialist nurse at my surgery on friday and this flags up any problems
my consultant asked me not to move to another practise if possible when we moved as he wanted me to keep the continuity of care
love
Kath
cofalot Kathleen1952
Posted
I am so pleased you have good medical care with everyone working as a team. Exactly as it should be. One person I have so much faith in is my brilliant pharmacist. He has picked up on and sorted out quite a few probs with drug interaction etc.
cx
cofalot chriselora4321
Posted
I note if I go into hospital for anything other than respiratory the physio will do postural draining with percussion. In respiratory they vary. My concern is some do tend to just come and chat. Waste of time. We don't ask much and if your temp is 40 you really do need a bit of help, just until the abs kick and and you can do it yourself again. As I say we don't ask for much.
cx
Kathleen1952 cofalot
Posted