Oxygen and Pulmonary Fibrosis

[steamike]

Hi all, I am new to this site, not sure if I am posting in the right place, I think I may need a bit of support for the future and you all seem like a friendly bunch. My mum has pulmonary fibrosis she has level 2 oxygen when resting for half the day and her sats are low 90's, she has level 2 overnight also and sleeps fine, but as soon as she stands up her sats drop to the 70's and she is struggling to walk, so for walking to the bathroom she is on level 8 oxygen, I am worried now that as she gets worse the oxygen wont be enough for her. Am I right in thinking that at home level 8 is the highest it can go, seems such a shame that when she is sitting she is fine, just when she is on the move she is bad. Also I am not sure if its panic attacks because she doesnt present as being struggling with her breathing like she isnt tugging a lot, like you see some people who are really tugging, she isnt like that, she just shuffles slowly to the bathroom and thats as far as she goes now. If she has to go out we push her in a wheelchair but now the cold weather has come, she doesnt want to go out at all. So does anyone know the answer to my question about the level 8 oxygen going higher at home.

[Mavary]

Hi Steamike. Welcome to the site. My Husband is on level 4 oxygen. I don't know much about it but I am sure someone will.

[silversurfer]

Welcome steamike I cant help you but if you click on the red balloon top right the good people at BLF will have lots of advice

[DozyDormouse]

Hello I too have pulmonary fibrosis and am fine sitting down, and the sats drop to the 60s/70s on moving. I am on 15L per minute, that requires 2 concentrators buddied up. It is not how much they fall during movement but how long it takes to recover. So the answer to your question is yes you can go higher but it would have to be prescribed by the cons or respiratory nurse. Hope this helps - Dozy

[steamike in reply to DozyDormouse]

Thanks so much Dozy that is the perfect answer, I am presuming you are in the uk and live at home x

[nannyb]

Hi Steamike, Welcome to the site, Sorry I don't have any advice for you, but I'm sure you will receive plenty of good and useful information from others on the site. best wishes nannyb xxx

[longlungs]

Hello Steamike welcome to this fab site lots of friendly,people with loads of info,help and support.If you need a pro's advice click on the red ballon at top of page and theBLF number is there ,mon-fri.Cant help with your questions but I know there are plenty here that will be able to help you.Nice meeting you Steamike see you soon. Janexx

[dime]

Hi Steamlike Iam on 15 litres per min. For 16 hours a day .I use a mask instead of a cannula because of my nose .Ihave tried lots of things for my nose but still get huge(gremlins) my name for them. It is really dried blood and sometimes my nose is so blocked I can hardly breathe . I do use my steamer a lot I find it is a life saver especially just before going to bed !!!1

[steamike in reply to dime]

Hiya Dime, are you in the uk, and do you have 2 concentrators at home to make the 15 litres xx

[nixy]

Welcome steamlike, I have learned a lot since joining this site, people are really helpful. It really helps to know people are going through the same things as you. I have copd, and not being able to breath is really awful. Sending regards and hugs to your mom and you x

[thedavidbjorn]

I would like to alert everybody suffering from IPF that a cure may be in sight. Early clinical trials show it being the first ever treatment to actually improve lung function in patients, rather than just slow the decline.

If you are symptomatic it may be worth writing to the company to see if you can be included in a trial. I do not work for the company so I cannot help with any of that...

atsjournals.org/doi/pdf/10....

promedior.com

Keep your fingers crossed

[Hidden in reply to thedavidbjorn]

Looks like another possible treatment in the works! fortmilltimes.com/2013/12/2...

[FullHouse]

Her story is my story. I was diagnosed with IPF on June 12, 2012. My need for oxygen used to be 2L/m while at rest. Recently my need jumped up quickly when I stood up and walked. Our 5L concentrator could not deliver enough oxygen for that.. At first I was alarmed and concerned. I finally accepted this as a natural progression of IPF. We bought a used Invacare 5 - 10L oxygen concentrator to deal with the problem. ..

[Servicer]

I have 2. Oxygen generators each with a output fo 9 litres per minute piped togeather it deliver up to 18 litres per minute and it is not enough for me to get around the house,