so then here we go is it me my fault for having severe emphysema for smoking from the age of 16 till the age of 55 or is it the mid yorkshire trust or then again it could be the doctors or nurses fauult that i have this is it me that i cant get the treatment i may need well then who know but 3half years ago i was told i had severe emphysema and it would be best to stop smoking which had the time i was not smoking but vipeing which i am not now then they say dont eat the wrong thing eat prob stuff which i may say i have and cut down on what i eat cos i must not get fat then iam told your must try and get some exercise which i may myself a memble of a gym and love going 3 time a week then they tell me you must wear and use a oxygen tank when exercise which i do and also when am out and about i also hear people on here saying they get told there fve 1 so here we go now is it me never been told my fve1 did not see a doctors for 2 year did not have a walk for 2 years after the first one where they told me to wear a tank then after let say asking nicely if i could see a doctors i was told that all my exercise was not doing much for me and that wearing a oxygen tank was not doing much they also told me 2 year ago there was not kind of opp i could have then laster year after getting to see a other doctors they say there could be a opp you can have would that be the one i could not have 3 years ago yes they say but you have to have all these test so i was book the tests and then the big one hit us all coivd 19 just after i was put on home oxygen which i was told 15 hours a day by the nurses and with the coivd 19 all my tests was cancelled and also the gym say no way you cant use our place with what you have then a phone call from doctors to ask how i am told him may of put a bit of wiht on he said that bad no good would am i to do got told must have tests got app for tests then they got cancelled again then got more tests and then they been cancelled againa when ask why they are busy but then got told they are not cancelled but now am feel why do i do all this so i have told them not to bother as it feel to me that it all my fault and that why mid yorkshire dont cant any more so am now going back on the cigarettes and the beers and the bad food giving up on the oxygen as if they dont care why should i care as it my fault and now i done all this well any one read it and well any one care or listen and that well be a big no ta cos the mid yorkshire trust the doctors and nunrses dont care why should any one elss
SO THE QUESTION IF WHO FAULT IS IT
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benney123
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Please don't give up on things, I have had my tests cancelled and now have to be refered again. It doesn't matter who is at fault the fact that you have the opportunity is there for you, take it grab it with both hands and be thankful you have the chance some people don't get it
Think positive and remember all the hard work you have done already. You gave up smoking ,exercised, ate well please don't throw it away. We are here to help and support each other. Have a great weekend and take care 😊 Bernadette and Jack 🐕 xxxx
the doctors can only help if they get to see you but as i have said they keep cancelled all my app so they cant help me woith my symptoms can they and i have check them out they i feel are the same as the other they say it my fault
If you are concerned benney about any current symptoms you have, you can still make a telephone appointment. Everyone is in same situation mostly, my GP surgery is not doing any routine patient appointment. Only telephone appointments and from there if they decide is an emergency they will ask you to come in. Things have changed because of the coronavirus, we are all having to do things in a different way.
i know what you are saying but it not just been this year it been like this from day one that all am saying i mean nunses say use home oxygen 15 hours aday the doc on phone call say use it 24 hours but as any body been round to see me and let me know which i should be useing also i use oxygen tank at 6l a min but home oxygen at 1l a min so when am out which do i use
You could actually phone the oxygen supplier as well with your queries or telephone contact the respiratory team at the hospital, leave a message with the consultants secretary regarding the questions about the oxygen. Hope you get some answers soon.
this is what am saying i been on home oxygen from march the 3 rd and not hear or seen a respiratory team or consultants it just as if i been lift to just get on with it all
Benny you need to kick arse now and again,i wouldn,'t have been put on ambulatory o2 unless i had made my suspicions and feelings known,likewise with the long term oxygen therapy after noticing my sats where deteriorating too frequently,they had also forgoten and ignored me so i needed to act and i am afraid with an overworkd system that is the way we sometimes have to be.very proactive!
Then i am afraid you have to kick some more.do it politely but consistently and you will eventualy get where you want to be,it is a frustrating process made doubly hard by the current circumstances and your trust is not unique in closing not only its doors but also its ears but you must persevere .In the end you will succeed.
Hi I understand how you are feeling coz my medical professionals don't care tuppence about me either and seem to delight in hacking me off and making things as difficult as possible. I think one of the reasons us copders are treated like this is part of the 'blame game' ie it's our fault for smoking etc. Don't play this with them and blame yourself. Ok we shouldn't have smoked but we didn't know the risks involved years ago did we? We were unlucky to get copd as most smokers don't.
It's your life and entirely your choice if you want to restart unhealthy habits again. Just don't do it for the wrong reasons.
I am sending you a big stick benney and you can use it to
A. Beat yourself up,give up on life return to the good old bad days and blame yourself for ruining your own life
B.Beat up most of the members of the mid yorks trust who pomiced you a way out and are failing to deliver it probably like most of the other trusts due to them being bombed out looking after people who just got sick with a nasty bug.
C.Lean on it for a while whilst you take a big breath and weigh up the options
Me i would go for option C,not take up smoking again,eat sensibly and exercise as best i could at home until this viral mess calms down a bit.the trust will still be there for you when it does,those operation options will probably still be on the table if you have done your best to stay as healthy as possible and i reckon the same options will be there for me too and i am 13 yrs older than you on oxygen and not getting any younger.
I do understand your frustration and i am in a very similar position but i am dammed sure after all the hard work i have done to try and stay alive that i am not going to give up now.
Best wishes Benney and i hope all you do with that stick is lean on it and think a while.
Oh benney. Don’t give up. A lot of us are living in limbo at the moment because hospitals aren’t working normally just yet. When you think about it, now is not the best time to be having procedures done or blowing into tubes when you don’t know who else has used it or what illnesses they are harbouring.
I used to attend respiratory clinic every six weeks. I recently had a telephone appointment delayed as my nurse had to go to work on the wards. I foolishly thought that the nurses that ran clinics only did that.
And that is another reason to stay away from hospital if you can. You don’t know who the nurses are nursing when they are not working in outpatient clinics.
Please don’t undo all of the good work you have done so far. Keep yourself in shape as best you can. That way, when your hospital is able to help you are not ruling yourself out by smoking and drinking.
It is very hard and very, very disappointing, I know, but hang on in there. This situation won’t last for ever. Your job is to make sure you are still here when it is over.
Hi Benney, you've had great advice and I really hope you dont give up. You should be proud of yourself for what you have done.
So Im going to go a slightly different way. I can of course understand why you are so angry and frustrated and want to hit out at the Mid Yorkshire Trust. If it was me I would be tearing my hair out. But to me this is the wrong way to go. To want to punish yourself as a way to punish them for their neglect feels to me like cutting off your nose to spite your face . While understandable, it's not logical when you actually think about it. You need to reject the notion that their neglect of you means you don't matter. YOU DO!! And you need to take care of yourself and be clear that their neglect is NOT a measure of your value. And you have proven yourself with all the improvements you have made which Im sure took a lot of effort. Please dont throw it away.
There is a wealth of information here on the forum. For instance, you say you dont know how much oxygen to use. Well why would you without it being properly explained? But there is a small bit of kit which you could purchase called a pulse oximeter which you put on your finger and it measures your oxygen saturation. You've probably seen them on tv medical series. You can get them on Amazon, or in Asda. You could use that regularly to see what readings you get when you are using your oxygen indoors and when you are out with a cylinder. As a baseline it should always be above 88% and some consultants would say 90%. If you were to keep a record you could phone your GP and ask if your oxygen prescription is right.
That's just one thing. We have a brilliant helpline here on the forum, kind and knowledgeable nurses who have probably dealt with many other patients who have had the same problem you are having with your trust . They can answer your questions and help you think how to go forward. The number is 03000 030 555. Please do call them.
And do come on here, ask questions, or have a vent if you need to - we all do that! We cant diagnose but short of that we know a lot about managing our conditions and how to live the best life possible and we like to share the stuff we have learned. Good luck!
i have one of them finger thing and i know how my sat are but when the doc rang me for my phone call app and i told him my sat he sat yes but that yours not our
I thought the question was, whos fault you were ill. My mistake. Surely the pandemic is to blame for the muddle are health care is in. Its up to you to keep pushing for the tests and treatment you need
am sorry i have post this it was just how i was feeling after a other tests got cancelled but may i say if you read all the post you would see that it not just cos of the pandemic that this as been going on it been like it for over a few years and i do keep pushing for them but we can only push so far before they stop all togher
Benny with regard to your oxygen,if you where initialy told to use your concentrator at 1 lpm for 16/24 and if it is mantains your sats between 88-92% then you are in a safe postion,as with your ambulatory cylinder at 5 lpm,if you now find that is not so please ring your respiratory oxygen nurse,you should have been left her number when you had all your kit delivered and even during this period of relative NHS shut down they should be avaiable to give you advice over the phone and if deemed neccessary arrange a home visit for you.
all am saying with my home oxygen it was the nunses that said use it 16 hours aday at 1l pm but when i had my phone call from the doc he said i should be on it 24 hours a day but then how do i work out if i go shopping with my ambulatory oxygen which is at 6lpm do i then go from 1lpm to 6 and still be on oxygen 24 hours but as you say when iam on my 16 hours 1lpm i am at 92 if not more sometime i know i should be asking theses to nunses or doc but cant get a st8 answer from them
Please don't give up. Sometimes it seems easier than carrying on being a goody gum drops with no obvious result. BUT it's your life and you want to put off the worst stage of lung disease as long as possible. I imagine most/many of us on this site have felt like you do from time to time . I'd say (and of course I'm no expert so ignore me if you'd rather) carry on exercising as far as you can , beer in moderation, but keep off the fags. Fags did my old dad no good at all.
all it is that i have done as they ask and got nothing back off them in anyway eg trement or tests or any thing you telll them how many min you do on bike at gym or the walking thing and they say thing like yes but how far can you walk in realy life out doors
It seems to me benny that going back on the cigs/beer/fast food will only harm yourself not the trust, its no good spitting your dody out, you have to be proactive and fight for yourself. We have all gone through times of despair with doctors/hospitals/gp's, not getting anywhere and constantly waiting for appointments which seem to get cancelled far too often. It seems to be a postcode lottery, some trust's look after their patients very well and some dont. It is very unfair but you cant just give up. Get your gp on your side and explain everything to him/her and ask for help, you will be surprised how that can change things. Good luck to you x
am sorry to say been there and got told there nothing they can do as there this covid thing around and they feel we should not be complaint about the nhs right now
This just makes me swear and i can tell you, they wouldnt have got away with saying this to me, I can be really fierce once riled and have tackled this department before, covid is no excuse for them not doing their job x
Hi., Benny, so sorry to near about your problems. Unfortunately at the time you started smoking it was sold as the smart thing to do by the tobacco companies who were making a fortune out of it. I was offered cigarettes by my friends and boyfriend of the time, but not being allowed to smoke by parents I resisted the temptation. However being brought up in a damp Yorkshire I developed bronchitis every winter when antibiotics were not given so I have lung damage. This is all in the past and cant be put right now so one just has to fight for the best treatment one can get and live life as full as you can make it. Best wishes M.
Never give up. If you’re a Yorkshire man I know you will do what you have to. Start exercising, mild at first and building up. Watch what you eat. Being overweight doesn’t help your lungs. Stop worrying, you can’t use it but you can help it. We are here for you 🐞
i know where your coming from but you have to ask is it worth it as yes i can do the exercis and eat prob stuff but for it to come to nothing with the hosp then you have to ask if id when back to eatting shite and smoking they may help me more cos as i see it them that dont do as they ask they help
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