Oxygen and IPF

[Juneyu]

Can anyone tell me if Oxygen helps with shortness of breath with IPF

[Katinka46]

My understanding is that oxygen does not help SOB and would only be offered if oxygen sats were low. It's very difficult, my symptoms are severe, breathless all the time, even sitting and in bed, and yet my sats are generally good, a bit of drop on exercise but I recover quickly when I stop. I do not have IPF but another unusual fibrotic condition: Obliterative Bronchiolitis.

Let us know how things go

K

[skischool]

my wife Cecilia had ipf which initially was wrongly reported as copd by a not too clever radiology consultant.Anyway to cut a long story short long term o2 therapy definately helped both keep her sats at a reasonable level(even on as little as 1 lpm)and maintain her comfort levels.Whatever the science says about o2 not helping breathlessness both the ltot and steroids like prednesolone gave her a better quality of life.You may need to bypass your oxygen therapy team at your local hospital and speak directly with your consultant who should be making every effort to long term manage your condition to give you the best possible quality of life.Good luck

[Juneyu in reply to skischool]

Thank you so much so comforting to hear other experiences, told today I do not meet the cryteria for oxygen as my blood gases are adequate. Sats do drop on exertion , and I do get short of breath, but sats quickly recover at rest to 94%. But feel apprensive about the future.

[skischool]

good to hear that you have had a good assessment,Persevere for a long term care plan from your consultant To the best of my knowledge there are 2 main drugs which have been shown to have some effect in slowing the progess of ipf but that they are regulated by the governing body NICE as to if they are cost effective to be proscribed in your case but like everthing else in life if you don,t ask you don,t get.Also there is an excellent small charity called Action for Pulmonary Fibrosis which are trying to push for a better deal for ipf sufferes,,more research and community based help.You may like to check them out?Best of luck

[Carnival567]

I have obliterative bronchiolitis and bronchiectasis, OB is fibrotic. My consultant wanted me to be assessed for ambulatory oxygen but respiratory nurse at GP refused to consider it. I have referred it back to consultant. My SATs stay about 92/94 at rest but go down to 85/87 on exertion. I also have heart problems. I don't know what to think quite honestly. I use a mobility scooter so I can get out alone, and can walk about 50 yards on a good day. The scooter gives me the opportunity to go shopping and socialise without always having to ask for help, but nurse criticised me for this. I sometimes feel they would rather shut us into a cupboard than help. My consultants admit they are somewhat at a loss and my GP reckons I am unique! Not sure what the nurse thinks! I sympathise with your feelings of apprehension, nobody seems to know how to treat me.

[Katinka46 in reply to Carnival567]

Need a button on here that makes sympathetic noises rather than 'like' which doesn't sound quite right. I had picked up some of your story before but to see it all set out like that is horrific. Surely — surely — a consultant takes precedent over a respiratory nurse? The only person who has mentioned oxygen to me was a clinic nurse after an incremental shuttle walk, I don't know what my sats were but she asked if I used oxygen for exercise. The previous walk I did there my sats dropped to 79%. But it was never followed up. I think I am fine as it only drops when I have been on my feet for a while and I quickly recover.

K x

[O2Trees in reply to Carnival567]

I have copd and bronch (and asthma) but know nothing about OB. But Ive been having discussions with my respiratory nurse about whether i should be using ambulatory O2 as my sats are similar to yours. Apparently because I desaturate more that 4% from resting sats to those with exertion (the desaturation is actually 6%), then I should be on it, despite my being very fit. This seems to be the accepted protocol for ambulatory now but I had always thought that as long as you only desaturate to 88% you don't need O2. Im sorry you're having such a difficult time Carnival. I would also have thought that a consultant would top a respiratory nurse. Although O2 isn't given for breathlessness, it does often help with it.

[Carnival567 in reply to O2Trees]

So would I, but she was in a very bad mood, and made comments about English patients using the Welsh NHS. Quite unnecessary as each NHS pays the other for care of patients from the othe country! All quite mad! My husband is booked into the University hospital in Cardiff for surgery, after having cancer treatment in Cardiff last year. No problems and nothing but kindness, despite being English. I think the respiratory nurse doesn't care for people who ask questions.

[Dragonmum in reply to Carnival567]

Some of them should not be in the job - I've run into a few in my time; how dare she make a comment re. Welsh/English NHS policy, it is reciprocal and always has been.

[Carnival567 in reply to Dragonmum]

It is yes, but they are supposed to have clarified the hospital choice thing. My GP practice is lovely, the cancer hospital in Cardiff was brilliant but sometimes the politics get in the way. We have always loved Wales and are delighted to be here. Haven't noticed any problems with the welcome in the hillsides either. The daft thing about her attitude is that the Bristol hospitals are the trauma centre for South Wales as well as the centre for congenital heart disease. As I say, I think she was just in a bad mood, and I was having a bad day. Not a good combination, but she should not have treated me like that. Thank you for your concern.

[Salmo]

I would say a definite yes to oxygen if you desaturate on exercise. It certainly stops my shortness of breath and is probbaly stopping me from suffering serious organ damage.

I am very sceptical about doctors attitude to giving O2 to IPF patients and also the assessment and criteria for allowing it to be prescribed. I've had IPF for 2-3 years or more and my experience is my doctors did not have a clue. After diagnosis I would have my O2 sats taken in the clinic and they were always 94-97% yet when I went out fishing I would be gasping for air and even falling over at times.

Mentioned this to my consultant and doctor at various times and they did nothing. Then bought a pulse oximeter and discovered that my O2 levels were dropping to 70s/80s on sustained exertion. When they finally agreed to a 6 min walk test they stopped me when I desaturated to 88% and my O2 levels returned to 95% within 30-45 seconds so they thought I did not need O2. It was only when I repeated test and kept going till my O2 levels fell to around 80 that they agreed and even then it took 2 months to arrange.

I would keep a close eye on this. If you have an oximeter check your O2 levels on or after activity. In my experience you can desaturate to the low 80s without even being aware of it especially with sustained low level activity like walking. If your desaturation is still minimal (i.e not below 90-92) you might be OK (for now) but if it goes any lower for sustained periods you might want to push for O2 or you could be risking damage (organ damage and pulmonary hypertension).

[Carnival567 in reply to Salmo]

Interesting. I already have pulmonary hypertension and heart problems. I shall make an appointment with the GP I think.

[Juneyu in reply to Salmo]

Thank you so much for your helpful reply, so encouraging to hear first hand from someone experiencing the same problems. My best wishes to you.

[skischool]

Salmo From research that i have done and from comments i have reviewed from many in the medical community it would appear that oxygen therapy be it long term or for ambulatory reasons is a complete postcode lottery..Various trusts and hospitals appear to follow completely different procedures.nobody appears to follow basic guidelines and flow charts issued by such as the british thorasic society or even Nice which is in efect the nhs bible amongst many more learned bodies.Nurses in hospitals do not appear to be sufficiently trained and proficient in its use and on occassions i have witnessed frightning incidences of either over use or underuse of oxygen in both high flow and low flow situations.Unfortunately one of these occassions resulted in the untimely and unpleasant end to my own wifes life. i can only say what i have personally experienced.The whole thing with regard to oxygen therapy needs to be reviewed nationally and training in its application and use raised to a higher level.Wow glad to get that off my chest.Happy days

[Carnival567]

Meanwhile we are back to the English/Welsh conundrum! Obviously can't have any tests done while I have atrial fibrillation and they don't seem to have had any info at the GP from the consultant, something else that needs to be chased up!

[madametobacco49 in reply to Carnival567]

I have a-fib too carnival emphysema and chf--I need my o2 MmeT

[skischool]

there are many tests and procedures that can be done for you now.perhaps a request for an echocardiogram would be helpfull in ascertaining the performance of your heart and associated valves and blood vessells,a quck trip to the haemoglobin specialist to ascertain your levels and determine if you are proposed towards pulmonaty hypertension.the list goes on.dig in to the ribs of your consultant and tell him/her that you want a full evaluation otherwise they will fob you off with lets see in 6 months time how things are.I know its bloody hard work getting the system to work but they are dependant on most of us giving up and as a carer 24/7 for 4 years it broke my back and own health doing it.But it is the only way we will achieve a fair do from a system we have paid into all of our lives.

[madametobacco49]

My ex-husband had PF and was on oxygen before he got a double lung transplant--and it helped him a lot--I don't know why they drag their feet when people cant breathe--I finally told his Dr --"don't you think he should be on oxygen?" Then he got on it--It certainly cant hurt--you still have lungs--that need air--Good luck--MmeT btw==He had transplant 9 years ago--is now 65 and doing ok still

[Helen6]

Wow, talk about a post code lottery! I must be really lucky with my team. My consultant has been asking me for some time if I felt oxygen would help and until recently, I had always told him that I was coping OK. When things began to deteriorate recently, I contacted my respiratory nurse and explained that I thought the time had come when I would benefit from oxygen. She came to see me and we discussed my requirements and everything was put in place - no tests, no hoops to jump through just let's try this and see how you get on. Since then, I have received good care from the lovely Air Liquide man. The oxygen has made a big difference (I have IPF). With oxygen I can do tasks that I was finding exhausting or impossible. I have also surprised myself in my lack of self-consciousness in wearing the cannula out and about. It allows me to be active and that's what's important.

Good luck in getting the right treatment for you.

[Juneyu in reply to Helen6]

Thank you so much Helen your advice is so encouraging, best wishes

[sibkev]

yes yes yes it also stops the blood from getting thicker because of the lack of o2 your hemaglobin level goes up puts u in danger of heart attack or stroke so yes it helps a lot and in ways you dont see

[AngieB72]

I have PF and pulmonary hypertension and I am on ambulatory oxygen. The main reason for being on the oxygen is to protect the other organs as I still get very out of breath and my SATs do drop. When doing the 6MWT they dropped to in the 70s even with oxygen but my recovery is quite quick - I would never normally walk that far without stopping to recover with or without the oxygen.

Keep pushing to get it.

[dall05]

Hi Juneyu

I've, been living with PF for 7 years now and have been on oxygen all of that time. I used to do 6 minute walk tests with and without oxygen and found the distance covered to be very similar. There was a big difference in recovery times though and discomfort to myself.

3 mins to get my sats back from low 70s on oxygen

13 mins to get sats back from low 70s off oxygen and more discomfort.

Most people who have PF respond positively to oxygen therapy which is not always the case with COPD patients if they retain carbon dioxide.

I know my life has been made better and easier on oxygen and couldn't do half of what I do without it.

Tony

[Juneyu]

Thank you Tony so encouraging to have positive response, I was told on assessment that even when I did need oxygen it would nt have any effect on my shortness of breath with PF. Best wishes