Is there anybody out there with Idiopthic Pulmonary Fibrosis and on high level oxgyen?
Anybody out there!: Is there anybody... - Lung Conditions C...
Anybody out there!
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31 Replies
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Hi Carladog,
Over the three years since I was diagnosed with IPF (NSIP) I have graduated from 4 lpm ambulatory from July 2011 to October 2013, then to 6 lpm until April this year when I then went on to 8 lpm and 3 lpm at rest. Two weeks ago I started on a second course of chemo (cyclophosphamide) and within four days was struggling on 8 lpm I continued like this for three days and was then at the stage where I thought I would suffocate! Fortunately my local respiratory team are fantastic, checked me out and I've come away on 12 lpm and 8 at rest. I occasionally go up to 15 lpm as walking even a few steps is a real struggle.
My life has obviously changed dramatically over these last few months and I wonder what's next.
Do you consider this to be high oxygen levels? What is your experience? Do you have specific questions, or can you advise me?
Best of luck with this horrible condition.
Warmly, Margaret
• in reply toCressie
Hi Margaret I put the question is anybody else out there with this horrible condition because my father has it. He was first diagnosed 6yrs ago and for 4yrs was on about the same as you at the start. He is now on 12lpm at Rest and 15lpm with any form of movement so very high! He has to have that though a mask for movement too. Our respiratory nurses are fantastic but i find all other heath care professionals just don't get it! I have had to lean so much over the last 2yrs as his condition has got worst due to chest infections etc. i do get looked at like i'm mad and often nurses will look at me like your'e got that wrong! until they try and move him on the wrong level! My father lives at home with my mum and brother who has learning disabilities. I have been trying to find a nursing home for dad to go for restbite so i could take my mum and brother away just for a couple of days,finding that very hard! I only live around the corner but have a young family so i find it very hard to be there as much i would like to be.I get told that there is lots of people out there on high levels,so why is it always so hard for people to understand? I do hope you have better experiences and can keep well.
Luv
Louise from Worester. xx
How I feel for you, My husband was diagnosed in 2008 with IPF, Given between 1 to 5 years to live, luckily went on into his 6th year. He started off on 1lt of oxygen per minute just over night (10 hours), gradually over the next 5 or so years his oxygen was increased gradually, Eventually he was on 4lts per minite 24/7 , We ended up with 4 concentrators. two upstairs and two downstairs. The two were linked together so he could receive up to 15lt per minute. The oxygen nurses were wonderful as were the district nurses. Do speak to the BLF they will do all they can to help. He was also on OROMORPH ( MORPHINE) It really did help him relax, Its very difficult to watch someone you love struggle so, I send you my heartfelt sympathy, Bulpit
• in reply tobulpit
Hi Bulpit My dad was put on Morphine too but he slept for two days and we couldn't wake him so not on that now. Its so very hard to see my dad struggle and my mum is very much in denial of his illness. She has never wanted much help and doesn't like outside people in the house as she feels she can cope! My dads had the runs for more than 4 weeks so had to go to re-hab for a few days because he's so weak. He comes back home Tuesday so i'm keeping all crossed we can get the right help. He is now at very high risk of falling so i do worry about him. We were told at the start of the year that we would be lucky to get though 2014! I really do wish i could go back to being a little girl again with my old dad back! :-[ . My heartfelt sympathy go's out to you too! so very hard. luv Louise x
bulpit• in reply to
Louise, Would'nt it be wonderful to put the clock back to happier times. You are obviously a very caring daughter,so just do your best. I can understand your Mum not wanting people in the house, I felt the same but she needs to take care of herself, its just not easy. Carry on as best you can, tell your lovely dad how much you and your Mum love him. I send you my best wishes. keep strong. Bulpit
• in reply tobulpit
Thank you so much! xx
Hallo carladog1, yes, there are a few of us around and we will do all we can to help you. It is difficult for doctors and nurses but particularly for doctors because so little is known about IPF and many, if not most, doctors have never seen anyone with it. Reading about it is not the same. I suspect I am not dissimilar to your father, first diagnosed 2008 and told I would probably die last year sometime! I have it on the best authority that I am still here. People make terrible jokes about bad pennies. Right this moment I think I am on 12 lpm and just sitting here writing to you and getting a bit breathless. I have two concentrators, a tank of liquid oxygen, two portable refillable flasks and four gas cylinders. It all mounts up but I find attitudes amongst Home Oxygen and District nurses to be really good. Everyone is clearly learning the hard way and getting better at coping. My wife looks after me and we have a Carer who comes in once a week to ease her burden. We are all learning a lot the hard way so we don't always get it right first time but do, I think eventually. So we can give you our experience with little guarantee except it works for us. I have run the gauntlet of drugs and finally left them all behind, Oromorph, Morphine, Carbocistene as regular regimes and prefer to rely on simple things like water and seawater to deal with the mucous problem. Pigs will fly before I touch Morphine again but I have on a rare occasion taken one dose of Oromorph, never more, to get a good night's sleep. These days I simply cannot stand let alone walk even one step. Well I can but the consequences are dreadful with blood/oxygen levels instantly dropping into the 70-76% and on occasion into the sixties. I really don't want to go there again so I don't try walking-a wheel chair is the answer, but mostly I just sits and thinks. O, and I sleep, much of it quite involuntary and I don't know until I wake up! So I suggest trying to 'roll with the punches' and take it easy, very, very easy.
My wife tries to anticipate my every need and whim night and day. I realise how hard that is and try not to disturb her but I call her 'Big Ears' because she always seems to know. She has equipped me with a large wooden spoon and a biscuit tin (empty) to bang on if she is in another room. Fortunately she only has me to worry about (I say only!) as all my kids are long gone and we found a first class home for her mother to move to last year.
So we all have the same disease but with slightly different situations to deal with. There is no 'one size fits all' but between us we will make the best fist of it. I hope you will regard these posts from us all as only openers, a beginning and feel free to come back as frequently as you need to for advice or just to talk. Unlike our politicians, WE are all in this together. Our thoughts, my wife is involved with this, are with your father, and you.
Hello Simeon, Just read your message to Louise, Your story is so like my late husbands. His oxygen levels often went to 49 hard to believe I know, even the paramedics were amazed that he was still able to communicate. We learnt to accept his levels at 76 they never went any higher, often he was down to 56, He had 4 concentrators at the end,two upstairs and two down. two were linked together so he could have 15 litres of oxygen per minute. Like you he could hardly put one foot in front of the other. He was a wonderful patient never complained. You sound the same. I send my best wishes to you both. My thoughts are with you. Bulpit
Hi Simeon Thank you so much for that! I've got so used to my dads blood oxygen levels dropping to the same as you,we have to go by my dads lips etc to see if he's ok. He's got two concentrators,liquid oxygen with 3 portables and 8 small oxygen containers. My dad seems to do better on the Liquid! I think when my dad comes home he won't be walking anywhere as well. I'm really not sure what the next few days will bring be i really do appreciate you taking time out to answer me. I hope you don't mind me saying but its good to know we are not on our own! God bless you and your family and please keep in touch, stay as well and strong as you can. Thank you so much Louise x
Thank you Bulpit for your kind words. Yes I walk in your husband's path. Indeed we all do with this horrible disease.
And thank you Louise also for your kind words. You are already seeing the way in which people who either have or have been involved with IPF reach out to one another to help in any way they can. The great shame is that this attitude does not extend to the rest of the population to generate a caring community across the board. I know you have great sympathy with your Dad and me and all of us. But oddly, I must confess to having some sympathy with those of you we leave behind and have the strange childish desire to be able to scoop you all up and take you to a better place than this sad world. Sorry, the ramblings of a deranged mind, I think.
Last night was not a good night. I woke up in the middle of the night and then after a while I passed out. It was different from falling asleep-quite a different experience, a sense of leaving this world, quite calm and peaceful and on my way. The next thing, I woke up. I'm with my Carer while I write this and, amazingly, her Dad died of IPF five years ago. She and her mother nursed him at home to the end so she knows all about it. Aren't I a lucky boy? She says her Dad had several experiences like I have just had in the run up to his death. Earlier she has shared with me exactly how it was to the end for him which removed a huge burden of concern about how unpleasant death might be. It doesn't have to be and it won't be. Some help like this would be good for you and your Mum I think. My Carer is supplied by 'CrossRoads'. I'm assuming you are in the UK? I know that may not be so but if it is, you could do worse than get in touch with them. I realize handling IPF is all about handling the symptoms given there is nothing we can do about the disease itself. Please do let me know if you struggle to cope with them as they occur eg loss of appetite, feelings of nausea and so on. They may be things we have learned ways to control. Talking of which, my Carer just brought me a little snack. Lots of love and bye bye for now.
• in reply tosimeon
Hi Simeon sorry i didn't reply the other day my dad was rushed into hospital . we did think we were going to loose him last night. His levels dropped to the 50's! we were told he had hours to live but he has been made comfortable now. His levels have gone back up to the 70's but he is on 22lpm. They tell us that he has an infection but not sure if its his lungs as they are so bad anyway! You sound like you have found a great Carer who really understands. God bless Louise
(from worcestershire)
Hi Louise, don't worry about me, there is no pressure in all this-that would be counterproductive. I am sorry to hear about your Dad and I really (yes, really) feel for him. Please let him know he is not alone in all this. We may be miles apart but in the spirit we are very close.
• in reply tosimeon
Thank you so much just got got back from dad he's holding on in there just about. Just see what the next few days will bring. Thank you again for your kind words it really does mean a lot to know we are not alone in this. God Bless Louise xx
simeon• in reply to
Hallo Louise, hoping and praying that no news is good news. Last night was a very difficult one for me with very little sleep. This meant that I was able to spend a lot of time with your Dad, rowing the same boat and supporting each other. That's the way it works, always a two way street-if you give strength you will also receive it. It's the way of life. Sorry, getting a bit mystical. That's what lack of sleep does. Talk again later,much love to you all, David.xx
• in reply tosimeon
Hi David There is no change in dad he's still very poorly. When he sleeps his levels go up but as soon as he opens his eyes they drop.They are trying to keep him comfortable as they can but he gets very distressed at times.I'm not too sure if he knows it's me there sometimes as they are giving him drugs to keep him clam. It broke my heart yesterday he asked me to hold his hand,he looked so scared.Thank you for your kind words they help so much! God bless and keep well. Louise xx
jenss• in reply to
Hi Louise, so sorry to hear about your dad, wishing you all strength and all the best to your dad, God blessxxx
simeon• in reply to
Hi Louise, my brain has been going walkabout recently. I blame it all on oxygen shortage-a great whipping boy to avoid stupidity. I was rereading some of the stuff you have sent to me and I realise we are relatively near neighbours, Worcestershire girl! We live in Golden Valley between Cheltenham and Gloucester. Small world. Hope your Dad is OK and you all are bearing up. Much love, David xx
• in reply tosimeon
Oh my it is a small world David. We are just off J6 in claines not far away. I've been chatting to our respiratory nurse who has know my dad from the start. she has for me today made things a little clearer for me to understand. we had doctors telling us so many different things! On Monday he's not responding to the treatment and his body is shutting down. Then Tuesday he's responding to the antibiotics??? What's going on?? She has told me he's still critically ill but the infection is clearing slowly! He still remains on the max oxygen high flow being blasted up his nose. She said he could stay the same or dip down who knows? she did say she didn't think she would have seen him at all yesterday! He's fighting it all the way! Love Louise x
simeon• in reply to
Good on him, Louise, and good on you hanging in there. Well there's lots of good energy flowing your way and the closer I get to the end the more certain I am of the reality of this. You used the phrase 'blasted up his nose'. That is just what it is like when you get to these really high levels of oxygen and it is difficult to bear, I know. I wonder what sort of cannula he has. If it is a straight 'up the nose' type which is the normal most common type they make the nose feel quite 'scorched' at high flow rates. For what it may be worth, there is another sort which I am using right now (I am on 10 lpm) which is a bit like a horse's nose bag! The oxygen flows thru two fine tubes into a sort of trough held under the nose forming a seal against the skin above the lips. You then breathe the oxygen in from what I call my nosebag. It works well and avoids the hard dryness that comes from the usual sort of Cannula. Gosh Louise, I hope that lot makes some sense and is perhaps some use. Anyway, for what it's worth...
Often the nurses know more about things than do the doctors. After all, they are the ones at the coalface day after day. My GP and Consultant are really lovely and I wouldn't change them for anything, but the nurses are the ones who know what is going on and what to do. Much love, David.x
• in reply tosimeon
That type is know as a "Bi-flow Nose Mask" and should be available from your oxy supplier, I know Air Liquide have them
simeon• in reply to
Yes, my wife being a fount of great wisdom pointed out the package with the name on that they came in. Thanks for telling me tho. I had a nose bleed five days ago that would have been much worse without them although some nights I do play hide and seek with them 'cos they go walkabout sometimes.
Lovely to see you adding your voice here too Jenss-more energy to the group.
Hi Louise, your breaking heart and ours too for you. It is so difficult. There are moments when one just wants to give up, to be anywhere but there struggling to breathe and there is nothing you can do. It is easy just to want to die, even though it means leaving those you love so much and who you don't want to leave behind. Perhaps he needs to hear you tell him it is OK. But I don't know your Dad so I am not sure. Is he frightened of dying do you know? Does he know what comes next? It is such a personal thing and we are all different at least in degree. Even if you sort of know what comes next the experience of the descent into a place devoid of breath is still deeply disturbing and frightening. The greatest thing in those moments is human contact-the comfort of someone holding you close, a hand gently smoothing your brow and perhaps rocking you ever so gently-the warm physical transmission of love to counter any sense of aloneness. All this can help lift you out of the darkness you find yourself in.
Louise, I don't know whether this helps but I am sharing with you what has been my actual experience of this moment. An 'out of hours doctor came in the middle of the night with a paramedic and they saw me through it. It has been of enormous help to me to know that when it is finally beyond what can be tolerated I have what is a sort of strong tranquilizer that a qualified medic will come over and inject. It sounds as if they have given your Dad something of this sort.
Hi Carladog,
Thank you for your reply and I'm sorry it's taken so long to get back to you. Struggling with this new regime has been more than difficult! I saw my local consultant this week and he says he has no-one else on these high levels of oxygen. I'm so glad we have this site and I can see I'm not the only one. In fact some of you are much worse off it seems.
I too struggle to walk, it feels so awful, but my respiratory nurses (in fact all the medical staff here in Norwich) are great and it's the most I've felt supported and cared for since I've had this condition. ( We just moved here last year).
I do feel for you all and all the suffering that's going on. I'm meeting up with the Local Palliative care team next week and look forward to learning more about coping. I'm particularly interested in your injection Simeon! Does your nose bag feel too hot or claustrophobic?
Thinking of and praying for you all, particularly you Louise at this difficult time.
God bless.
Margaret x
Hallo Cressie, I've just come across a question you asked me two month's ago in a blog to Louise. Sorry I didn't respond but I have just gone thru a pretty bad period that I thought had brought me to the end of blogging-obviously it hasn't but I can't speak for tomorrow! Perhaps you have your answers already but just in case.......What I fondly refer to as my 'nose bag' is a Bi-Flo Nose Mask. I'm rather attached to my own name for it! Alongside that I use the regular canulla with a two bits that go up my nostrils. My oxygen feeds have changed as times go by:
Oxygen cylinders lasting about one hour,
Larger cylinders
Medical liquid oxygen (about 46Litres kept as close to -193 degrees used with Helios thermal flask for mobility with 'on demand' cannula. ( Helios flask was replaced withe larger 'Companion flask.
Finally all these have fallen to the need to have up to 16 litres 24/7. This is provided by linking 2 Concentrators together. These 2 machines churn out oxygen 24/7 forever, or so it seems.
That's it but you probably know all that already.
I am in the end stage of IPF and as far as I know, this is the end of the line. One has to go to hospital if more is required.
For me, all the cannula have a limited period before they become really irritating which is why I have my 'baggy' which I swap around with the conventional cannula. Generally, I use the baggy at night and the regular cannula during the day because it wastes less oxygen and my lungs benefit from that 'little bit extra'. The baggy doesn't feel too hot or claustrophobic but I do fiddle about with it to keep it feeling comfortable'
With regard to 'the injection' are you referring to the little boxes of 'goodies that lurk somewhere in the house? If so, these are nothing dramatic. I already use Lorazepam which helps control anxiety and believe me it has proved a godsend when I am at the end of my tether because I just can't access enough oxygen. That moment is indeed scary! Well, that is the sort of thing sitting there for the final moment. It is not a 'here endeth all life' type of thing, just a means of introducing the drugs into the body should it for some reason prove difficult. But this is the beginning of what is probability the end. It's rather comforting to think that all has been sorted!
I apologise once again for taking 2 months to answer you. Been a bit busy.
Look after yourself Cressie, this is a rather nice family!
I writing this totally heartbroken my dad unfortunately lost his bravely fought battle against IPF. He passed away very peacefully in Worcester royal hospital on Saturday. A hole week has passed and i feel so empty and lost. God bless everybody out there with this most horrible disease and thank you for giving me and my family support to help the fight. Thank you xxx
• in reply to
Sorry for your loss Carladog. I was diagnosed in 2001 and can understand what both you and your Dad went through. I am on oxy (4lpm) 24/7 but am still reasonably mobile thank goodness.
Keep well Scibe You can fight it! Always do as you are told my poor dad sometimes really didn't bless him! God Bless Louise x
Hi Louise.It's a bit late to say I am so sorry to hear about your Dad but I know he will have achieved a well earned release from this disease and will have benefited so much from the love and attention he received from you all.
• in reply tosimeon
Thank you simeon its so very hard! Never a good time to let go.We are all still finding it very difficult to carry on. I do want to carry on and raise awareness of this horrible disease! We did donations for dad to Action for pulmonary Fibrosis. I would like to do so more fund raising to help others! Have you ever heard of them? They did only start up last year. x
• in reply to
Sorry David! Brain not swiched on!!!!
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