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oxygen advice

beattied profile image
15 Replies

I'm new my names David I have IPF need double lung transplant.

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beattied
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15 Replies
Billiejean_2 profile image
Billiejean_2

Hi David and welcome to the forum. Several people here have IPF and some of them are on the transplant list. You will get a lot of good advice and moral support here.

vittorio profile image
vittorio in reply toBilliejean_2

..Must admit I didn't know what " IPF"

vittorio profile image
vittorio in reply tovittorio

OOPS ! try again ! , my computer is a bit like my breathing today - all over the place ! , but having looked up "IPF" , I wish you well, there have been great strides in managing and treating this illness, so good luck ..

Damon1864 profile image
Damon1864Volunteer

Hi David, welcome to the forum,there is lots of good advice and support on here. Everyone is lovely and we have a good laugh at times. Take care 😊 xxx Bernadette

Dragonmum profile image
Dragonmum

I don't have any knowledge of IPF - so many lung conditions, I'm Asthma/COPD; there was someone joined very recently with your condition and I know he had some helpful replies. Nice to meet you and hope you get some info. soon.

stone-UK profile image
stone-UK

Hi

Read Tonys profile, very inspirational

healthunlocked.com/user/dall05

Time_2_drink profile image
Time_2_drink

Hope you get advice you need David look at stones post about Tony' take care

Carnival567 profile image
Carnival567

I hope all goes well for you

Dragonmum profile image
Dragonmum

Just popped back to say there's a piece in The Lancet today re IPF - it's behind a paywall as usual but I'm sure BLF can access it - it sounds interesting re advances in treatment. Try contacting them.

Pam1952 profile image
Pam1952

Hello David and a very warm welcome to you. I hope that you enjoy being part of the group and get some valuable information. All the best. Pam 😊😊😊

cofdrop-UK profile image
cofdrop-UK

A very warm wellcome to you David.

cx

capghar profile image
capghar

Hi Dave. I have IPF, diagnosed 5 months ago, was a fit 76 year old and became breathless during an evening meal... result IPF.. I'm on home Oxygen, high doses of steroids have caused diabetes, diabetes have caused retinopathy problems.

However onwards and upwards. .. Not suitable for lung transplant, treatment available is minimal and ineffective. Loads and loads of support. With constant monitoring I able to ward off most problems and can still look after my garden and greenhouse, albeit slowly with many rests for O2.

You need to check that your consultant is an expert in this field, if not change, and the most useful professionals are the respiratory clinical nurse specialist (which you should be registered with) and the home oxygen nurse and team. Great people with lots of useful advise.

Salmo profile image
Salmo

Hi David - Sorry you are here but welcome and hope you find site useful. I also have IPF. On oxygen, Esbriet and and need transplant. I find this site really useful for all sorts of advice and information so please let us know if you need any help advice etc.

sibkev profile image
sibkev

oioi welcome i had double lung tplant march 11 2016 im hear if you need to ask anything just drop me a line on hear and ill answer i also had ipf so i know what ya goin throu one thing i need to say is dont sit back and rest train train train i know its hard but it make post tplant life so much easyer

Dedalus profile image
Dedalus

Hello and welcome David

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