Hi everyone. Earlier today I had to go to the Post Office to renew my driving licence. Couldn't do it online as passport had expired. They take your old licence, payment and then take your photo. Made a proper spectacle of myself as I was literally gasping for air. The Post Office counter lady was really concerned and could not have been more patient. 2 litres of oxygen was not doing what I needed it to do and I felt proper self conscious. I rang the Respiratory Nurse from the car who told me to go home immediately and check my Sat's on no oxygen and she would ring me back. They were 72%. She rang me back and I told her and she said Don't Panic. I was horribly breathless and she kept saying Don't Panic. All I could think of was Corporal Jones. After a couple mins oxygen they went back up to 97% at rest and 95% on no oxygen at rest. After she made a few phone calls I am now prescribed 4 litres a min oxygen ambulatory. Thankfully not required at rest. Have to say I am somewhat disappointed that my oxygen requirements have doubled since my 6 minute walking test on 4th January where I didn't fall below 92% on 2 litres. That's the fibrosis doing it's thing unfortunately. She absolutely insists that the Mycophenolate will help a lot with the inflammation but I need to be patient. That mirrors the feedback I have had from some very helpful users on this excellent platform.
Dont panic.All I could think of was C... - Lung Conditions C...
Dont panic.All I could think of was Corporal Jones.
So pleased you’re ok and hope the Mycophenolate will help and soon. It must be so hard not to panic though. Take care xxx
Hi. Thank you for your reply. I don't think I was panicking when it happened. I knew it would pass at rest. The problem was I was so breathless that I couldn't speak and the Respiratory Nurse didn't want me to use the oxygen until the Sat's had bottomed out. So there I was gasping and trying my best to communicate with her while she kept saying Don't Panic. The man who delivered my new oxygen tanks yesterday has said I am actually now prescribed 4 to 6L ambulatory. I thought it was 4L. I have high hopes that the increased oxygen will prevent any reoccurrence. Warmest regards
Dave
Hi Dave, that must have been so scary for you. Hope the meds help. 🤞Take care 🙂xx
Thank you for your reply. I was my worst day so far. I literally could not catch my breath or speak. My breathlessness had been so bad that I couldn't leave the house anyway. It took months to be prescribed home oxygen as all the Consultant seemed bothered about was that my Sat's were above 94% at rest. To then find out that I was just as breathless outside on 2L came as a blow as I had successfully completed the 6 mins walking test on 4th January. I am yet to try the 4L outside but it has made a difference indoors. Warmest regards
David
Hi Dave, it's very frustrating when they can only seem to focus on one thing! A GP at my practice is like that. Try to tell him the whole picture but he will only deal with the one part he has rung about 🙄. Hope the 4L helps you when you try it outside, 🤞🤞Take care xxxx
You did not make a spectacle of yourself- the public needs to know that sometimes people like us have problems in public places. i hope you got your driving licence sorted out between gasps. Hopefully the new regime will ensure that nothing like this happens again. Best wishes. xxx
Thank you for your reply. The lady in the Post Office was wonderful. She could see my obvious distress and was very patient with me. Photo obtained minus the oxygen cannula, fee paid and I should have my new licence within a fortnight. It's a fine up to £1000 and invalidates your insurance to drive on an expired licence. I think it made things worse having to stand in the inevitable queue. No seats obviously and my breathing just got worse and worse and louder and louder. Only one person behind the counter and she had to come out to take my photo. The frustration of the queue behind me was obvious to see. The incident has led to me being prescribed increased oxygen so some good has come of it. Warmest regards
David
I hope you're ok now. I totally agree with Alberta, you must not feel embarrassed. In fact, because you were self conscious, you probably made your breathing worse.
I am wondering if, like me, you have a slight anxiety problem associated with going out with your oxygen? I had an appointment with the doctor this afternoon and all day up to when I was about to leave I didn't use a drop of oxygen. my daughter came to pick me up and BOOM! my breathing was all over the place! I was, and always am, fine once I got in the car!
I have just sent off for my license too, mine was 3 years out of date! Oooops!
All the best xx
Hi. Thank you for your reply. My condition came on so quickly and was dismissed so many times by my GPs and A and E. ( they were convinced I had had a heart attack) that I waited nearly 4 months to even commence oxygen. I was discharged after a week in Hospital in October on no home oxygen and unless I remained at home at rest then my Sat's plummeted. All the Consultant seemed bothered about was that my Sat's were above 94% at rest. I was therefore confined to barracks as any attempt to go out resulted in me being unable to breathe. It took weeks of phoning his secretary before the Consultant finally sent me for a home oxygen assessment. They gave me a cylinder which goes on my back like a rucksack. I found it difficult to put on and take off without assistance and it is quite bulky. You are probably right about the psychological impact on me as I feel really self conscious with it on. I am still adjusting to wearing it I guess. Warmest regards
Dave
People will get used to seeing people like us using whatever medical equipment we need. After all they've got used to crutches, wheelchairs, scooters etc. All the messages from the powers that be are about 'enabling' us to be 'independent.' I hope that does not mean only the freedom to sit on the sofa with one's sats at94.
I totally agree with your point about enabling us but sadly that has not been my experience at all. I have found the GPs, Dr's and Consultants to be lacking in empathy and not very forthcoming with information in any way. I have even had one walk off when I questioned him after he made a ridiculous comment. On another occasion I asked if I would be able to work again only to be told that no employer would have me in the building as I would be a liability. Now while that may be factually correct he did not need to be quite so brutal. Despite 2 lung function tests I still do not know what my lung capacity is. I was discharged on no home oxygen and barely made it to the carpark. My son had to get me a wheelchair. The whole experience of being left without a diagnosis for months and that there was nothing wrong with me to then finding out I had this condition only to be told by my GP that there was no cure and nothing he could do for me was very demoralising. I cannot say the same of my dealings with Health Care Assistants or the Nurses. They have thus far been very empathetic and understanding. I think I saw the first Consultant for less than 10 mins during the entire week I was in Hospital and I have not seen him since as he referred me on to another Consultant.
Grrr! Consultants used to think they were God, but I thought times had changed. Obviously not as far as the consultants you have met are concerned. I put enabling and independent in inverted commas because they are 2 of my least favourite words, being just tossed around by people who do absolutely nothing to make these terms a reality.
Glad you are sorted now 😊 I just carry my cylinder and also have a trolley from the oxy people. I say I carry it, normally I will go out with family and my granddaughter’s job is to carry it for me!! Normally great, but I can end up being dragged along 🤣🤣 Xx
Hope u got Yr license.mustve been awful for u.gd job yr nurse was contactable & efficient x
Hi. Thank you for your reply. Yep. Licence all sorted and incident has led to my oxygen being increased so some good came out of it. Warmest regards
Dave
That sounded scary. Glad your respiratory nurse could help.
Hi. Thank you for your reply. My Respiratory Nurse has been fantastic and more importantly is contactable. Warmest regards
Dave
Oh gosh so hard not to panic. Glad you’re feeling better. Hope the new regime u in a better for you c
Hi. Thank you for your reply. I am looking forward to trying the increased oxygen outside this week but it has already made a difference moving about indoors.Warmest regards
Dave
What an awful experience. Not the best way to get your oxygen prescription increased. Hoping you're OK now after it all
Hi. Thank you for your reply. It wasn't a nice experience at all but like you say it has led to my oxygen being increased so some good has come of it. Warmest regards
Dave
Hi Dave. Re MycophenalateI've been on on it for a while probably 2 - 3 years. I have ILD
I've done ok & had no side effects. I used to have to take 3 twice a day but now it's 2 twice a day. I'm on many other tablets as well but there's been no side effects
How are you doing on Mycophenalate How many do you take
Hi Sara. Thank you so much for your reply. I started Mycophenolate on 05.01.24 and have gradually built up to 1mg morning and night. No side effects other than a dodgy tummy in the first week but that quickly resolved itself. I too have ILD. Autoimmune caused by Sjogrens. It has really done a number on me. I have various types of scarring and inflammation which I totally fail to understand. I have honeycombing, ground glass, cysts and large areas of inflammation that are not yet scar tissue. I don't understand how the scarring isn't uniform in appearance? My new consultant says we need to aggressively target my immune system hence the Mycophenolate. I am also on 15mg Prednisolone and 200mg Hydroxychoroquine morning and night. He believes the Mycophenolate will work and if not they will add Perfenidone or Nintenanib. I am really lucky to have a Respiratory Nurse. I wasn't meant to. She came to the house to check my Sat's once I commenced Oxygen. She is wonderful and a font of knowledge. She has added me to her caseload which I really appreciate and it is thanks to her that I got my oxygen increased yesterday. She is able to open doors that are closed to me. She, like you, has seen good results with other clients who have been on Mycophenolate for some time. She tells me I need to be patient. I am still coming to terms with this illness and the gasping episodes scare the living hell out of me. Makes me reluctant to go out. Hopefully the new oxygen prescription will make life outside easier. I am also going to ask about pulmonary rehabilitation as I have heard good things about it.Warmest regards
Dave
Sounds like a scary experience. I'm glad they were able to increase your oxygen straight away and it is helping. I had mine suddenly increased from 5l to 6l ans from 2l to 4l at rest. Although I was disheartened about the sudden increase, it has helped and I no longer need oxygen at rest. I started mycophenolate about a week before you and, like you, am pinning my hopes on it working. Slow and steady 🤞🏼
Thank you for your reply. Steroids really did not work for me. My CRPs remained stubbornly elevated even at 40mg for a month and 30mg for another month. They had to drop them to 15mg as I turned into a cabbage patch kid. My face proper ballooned ( they call it moon face) which has now resolved. I am in touch with an organisation called Action for Pulmonary Fibrosis who have a support line. They have been excellent. They have assured me that they have other service users who have the same or similar condition as me who have self reported a significant improvement since commencing Mycophenolate. My Respiratory Nurse says the same as have others on this platform who have been kind enough to contact me with their experience. All of them say that it really helps but that it takes time. 4 to 6 months to have an effect. Consultants told me the same thing about Hydroxychoroquine which they now accept is doing nothing for me and intend to discontinue at my next consultation. I or we that have recently commenced the Mycophenolate have a long way to go if this is the case. If it does then I will definitely let you know. Fingers crossed it does exactly what others with first hand experience say it does. Warmest regards
Dave
That is very distressing for you hope you're ok
Thank you for your reply. I am very grateful to my Respiratory Nurse for helping me. Without her I think I would have been left on 2L a minute indefinitely as it took 4 months to be prescribed oxygen in the first place. All the Consultant cared about was that my Sat's were above 94% at rest which they were and thankfully still are. Problem is they fall like a stone once I attempt to mobilise. Warmest regards
Dave
Well Corporal Jones, I read your post with interest , not because I can identify but because what you described I can see coming my way. My breathlessness seems to be more unmanageable week by week. No mention has been made of oxygen but quite often wish I could have a snort! Shoes and dressing are problematic for me, and my walking is down to around 25-30 yards without a bench or a wall to sit on. my blood oxygen drops to low 80's on exertion but recovers quite quickly on rest to 94% -95%. Like you I am now very aware of how few seats there are in shops and towns in general. One day at a time.
Hi Grahame. I have just read your profile and see that you suffer from COPD whereas I suffer from Interstitial lung disease. Basically scarring of the lungs. The 2 conditions are obviously quite different so my earlier response may not apply to COPD in the same way it applies to ILD. However if at all possible I still think it would be worthwhile having the breathing test as only being able to walk 20- 30 yards without your oxygen dropping to low 80s must be so limiting for you. You could also try making contact with your areas Community Respiratory Nurses and tell them how your breathing is being affected by your COPD. I have found their assistance invaluable. Warmest regards
Dave
Thanks David, I have a date with the COPD nurse coming up so will add that to my list of questions. Perhaps I should have read your profile first, still learning on this site. All the best
Grahame
Hi Graame. Thank you for your reply. Hopefully my response will benefit you. Firstly I should have been on home oxygen ages ago. Probably months. All my Consultants were bothered about was that my resting Sat's were above 94%. I was not sent for a home oxygen assessment nor a 6 minute walking test. These are well educated and learned people and they must have known my Sat's would fall on exertion. They weren't bothered. Secondly 80% Sat's is too low . Without meaning to worry you, your internal organs will eventually suffer damage as not being supplied with sufficient oxygen. Additionally I now have clubbing of all my fingers. The finger tips swell and they take on the appearance of a club. A bit like a baseball bat. That was caused by low oxygen and is irreversible. I was stuck on prednisolone 40mg a day and discharged. My face blew up like a balloon yet I was still breathless on exertion. My sofa became my bed. Huge mistake but I was too breathless to go outside. It literally took me weeks of ringing the Consultants secretary to get him to send me for the breathing assessment. I am an extremely patient man. Too patient in fact. My advice to you would be to be as assertive as possible and to push for a home oxygen assessment as from your numbers you definitely need it. From my recent experience you also need to seek help if the oxygen isn't helping as it may need to be increased. Warmest regards
Dave
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