Steriods and COPD

Thought of something else: do people burn lots of fires for warmth/cheer where you are? Smoke that never bothered me before just kills me now & i'm glad that only 1 neighbor has a fireplace.

Hi meant to reply to you before now. Ha the thing that got me was the thing that you say about being Scottish as i said braes, its so funny as i always thought everyone said Braes so yes you are right i live in Dunfermline Scotland but if you dont say braes then what do you call them ? Well have been struggling now to get to work ect when i get there im okay but minute i go outside to walk again horrible even more so now its scarey to me. It then makes me so anxious so then that to wont help I clean houses so its weird i can do that but then cant make it to bus station so easy if i could drive would be okay. I do have Doctor tomorrow again and allready worried just about getting there mental only a small brae up to bus stop Not even my family know as they see me still working ect but dont see me struggling to get there and doctors are the same if you are not sitting in front of them wheezing they think your ok but dont see you trying to get there or walking up a couple of stairs. Well since steriods or other stuff no working i really dont know what they will do morn

Hi Margaret i have been like that a few times and its usually a flare up It wont go away itself Usually antibiotics plus steroids does the trick or I have been given the nebulizer at health centre as well as steroids and antibiotics and given oxygen sometimes so dont worry to much you will get sorted out ok As Brian said previously we learn and grow with the diseaseBut as soon as I feel anything coming on Icall the health centre soon as and say I have copd and having difficulty breathing I get seen that day Hope all goes well James

Thank you as I am so worried as hv had the antibiotics and Steriods and not helping x

Thank you as I am so worried as hv had the antibiotics and Steriods and not helping x

Oh, Margaret , my heart goes out to you & you're in my prayers. I hope you see this before you see the doc. You must be forceful to get him to understand that there's been big change, specifically that you can't do inclines. My guess is that you see a difference on stairs, also. Be persistent. Ask them to put an oximeter on you and to compare walking flat & climbing stairs. Explain that just a few months ago there wouldn't have been a difference. Be forceful, something has changed and yiu need help.

I'm being a little pushy here myself because i ignored changes in my coughing, for several years. I assumed it was just COPD progression. Maybe it was at first, but now it's bronchiectasis. I did not realize until after i was in hospital w/BX & pneumonia that i don't cough in the morning. ALL my medical appointments for 18 yrs have been in the morning. The only person who noticed the change was a friend in Canada with whom i talk late at night, by which time my cough would be awful. We've known each other all our lives & immediately notice any condition changes, limps, etc., whenever we see each other or talk on the phone. (I was about to remark that she must be drinking much more than 2 glasses of wine at dinner when she finally told me she had Parkinson's. )

Not everyone notices changes in others. Some of us are just built differently (both that friend's mom & mine were the same; none of our siblings are.) So, you must teach your family that things are changing & that you need their help. If nothing else you need them to go to med appointments w/you to say, Hey! Listen to my mom! She's getting worse!

I know that all that goes against Scots blood, calling attention to yourself and anything that might sound like complaining about health. I'm not asking you to post a bulletin in the paper, lol, just enlist the live of family & friends.

We call them hills or mountains, Margaret, depending on size & locale. Most anything seemed like a mountain when i was growing up on the below sea level Texas coast where it's nothing but flat. Braes is a much prettier term but we don't have much similar landscaoe in the States. Your rises just look different somehow.

I hope they help you Monday.

Hi went to see my COPD Nurse today so as i have had steriods twice since December and they are not helping she said i should perhaps go on inhaled steriods but then said to do an ECG and Chest X-ray first so have that tomorrow. Thing is then there is a two week wait to see what it says. So nothing to help me meantime.

Pardon my French, Margaret, but that is bull corn! Inhaled steroids are going to take time to become effective. Were you able to get the nurse to understand that this is a big change in what you can do? I believe they might have tried you on a different antibiotic & a different steroid immediately.

I imagine that you're feeling more stressed. If you can, look at this as a silly game from which you have an escape: if things get too bad, you will go to accident/casualty. In the meantime, your job is to practice whatever form of meditation that works for you every time you feel anxious.Some of the breathing exercises online are specifically intended to help calm both our breathing & anxieties. If you have to stop & rest 5 times to get up a hill, then stop and rest 5 times. Leave earlier, especially for the bus.

But by all means call that nurse back & give her what for. By her plan, it could be a month or more before a puffer helps you. If that particular inhaler isn't effective for you, this whole thing spins on and on and on. Explain that if things keep on as they've been, you'll end up in casualty when it could've been avoided. Write down what you want to say & don't let the nurse interrupt. This is important and right now, you must be a squeaky wheel for your health.

Am keeping you in my prayers. Let us know how you get on.

Have you had a Pulmonary Function Test (PFT)? It measures the air as you breath in and out to tell the % of your lung function that is good. In my case, I have only 30% of the full function I should have. I too have a struggle with stairs and walking, but my O2 level is not low enough to be prescribed O2. Oxygen(O2) may be your answer if your Dr. approves.

Until you can do different, follow your medical orders and eat as healthy a diet as you can.

Best of Luck

Well as you say i should leave early for the bus as when i left this morning i felt awfull on the way to the stop. Really breathless and had 2 stop a while felt a daft as it was a freezing morning and ofcourse i am now more anxious which will only make me worse i could have cried just wanted back home but knew had to get to Hospital. Was so happy when back home again. I know now i am going to be more anxious every time i go out now. What worries me is now that the steriods dont work what hope have i got to not feel breathless as i have nothing now. God i only want to work and get out again Thanks for your reply

All i know is she said i was just over limit, and that is why they didnt want to give me inhaled steriods as it is 50% or under, but since i have been breathless since December and antibiotics or steriods didnt help she is going to insist once they see what the test say when they come back. I dont know enough about inhaled steriods as i am bit worried and wish the steriods i got before did the trick again, was so good before knowing i had those in the house if anything like this happend to have nothing scares me. I have the nurse again on 25th March will see what happens then i guess

Do you have a friend, neighbor, or family member that could go with you n the bus for your next visit to the nurse. It company may just help to ease your nerves.

Also, sometimes we are not told fully about the meds that we are told to take. They can often take weeks to take their full effect. I've experienced that myself.

Ask if a Nebulizer could help your condition. Again, eat a healthy diet with fruits and vegetables, it can truly make a difference.

Fear is a tough thing to overcome, but don't you feel proud when you do.

All the best.

I had a nice short cry myself last night, came on right before i went to sleep. Tears are there to bathe our eyes & crying gives a little release, so there's no shame in it. If a girl's gotta cry, a girl's gotta cry. (Ditto for you guys out there!)

We all hope that this is a temporary thing for you & that you just need a temporary adjustment. Psychologically i find every change with my lungs hard to deal with. The way i avoid anxiety is by not thinking about it. You are a tough, disciplined woman and i know that you can train yourself to stop your brain from going into 24/7 worry. Give yourself some scheduled worry periods. When each one ends, stand up and envision closing the door to a mental Worry Room. The meds you had didn't work this time but that doesn't mean that they never will. I am sorry that you must wait for results as i think you need more immediate attention. I am fairly astounded that you've got a diagnosis but haven't already been out on inhalers. The silver lining in this mess is that you will be out on one soon.

Yes, you may need an extra scarf & to learn where you can shelter & rest briefly on your way to/from buses. It feels funny to you now because this needing a rest is new to you. Just know that most people around you won't notice a thing -- which is why if you are in need of help, you must yell or wave your arms or something. People are so preoccupied with tech, and with money worries, that no one sees anything these days.

Meanwhile, i am wondering what kind of cleaning you do and what chemicals are involved. Many of us have had to hive up all things scented and most things chemical. They impact our lungs with every exposure, as does dusting & vacuuming. Bleach is one of the worst offenders. A good N-95 mask can help a lot.

Hang in there, Margaret. You got your tests done today, and that's a good thing. Have you talked to your family & friends yet? Or your closest friend? A little hand holding would be a good thing right now as reminders that we are loved help us heal and calm our minds.

P.S.: i didn't mean to make light of anxiety. Some of us suffer much more with it than others. Again, that blithe-seeming COPD nurse might have a suggestion if you explain how worried you are.

No have one friend who works and only see her if going out for a night out. My 2 girls also work and busy with children and working full time they dont really live near me Did say last night to let me know if i need anything in food ect but do my shopping online so no. But as you say if i did have someone to go with me to the bus or appointments would make me less anxious as the thought of going out alone now scares me a bit really. I was going to look up Nebulizers online to get one is it something you can take anytime or what i dont know ? And yes my Daughter was texting me last night to eat healthy and get fruit as i just throw stuff in microwave every day after work and have never really done all that She is so so healthy and organic and forever on at me so yes i promised her would get fruit in so i better I only ever have a pear. Thanks for your reply

I have my Salamol free inhaler but if i am out and breathless that does nothing for me at all. This morning was so worried i just had to go back up to ask if i could get seen as cant be like this and wait for test to come back. I did get seen by someone and she sounded my chest and said it was bad on the right side. I told her had seen the nurse and was told i was not to take steroids as already had them December and February with no change. Then she said No you take them when you know you need them. Then she said i am going to put down for you to get a steroid inhaler also. I said,Oh the nurse told me i cant get that as i am not below 50% . She said thats no right you have had 2 flare ups this year and that no longer applies so you will get one. I do not really want to get depend on things at all but when i am like this then would be okay. God why do they all tell us diff things. Yes i know what you mean about the cleaning as i do use stuff i should not and one house has 2 dogs and cats i just thought id be okay but now i am going to ask if they can all get chemical free cleaners.Thanks again for your concern

A nebulizer is a machine that acts as an air pump and channels air through a small dia. clear hose to a mouthpiece that one places sterile liquid that forms a very fine mist that one breaths. It does the job that a rescue inhaler does, but 4 times a day. It is very easy, but it is not portable. Ask your nurse/Dr. about it.

Another thing that comes in handy is to wright down, on paper, ahead of time all that you want to speak with the nurse/Dr, about. It's to late after you leave from your medical visit.

As for eating better canned fruits/vegetables are storable and their shelf life is longer than fresh as well. Fresh is of course always best, but can also spoil quicker. Bottled juices are also an excellent choice.

Stand tall, your friends care about you !

Margaret it appears like your local health centre is not much help to you and perhaps you should go to A&E where you can get proper attention and give you oxygen if your level is low ,steroid and antibiotic if required or even give you the nebulizer The last thing you need is to get pneumonia Best wishes James

helo margret your getting some realy good advice from your friends on here, im lucky i have a long suuffering wife to support me, so my thoughts would be treat us as your extended family tell us what is worring you-and let us be there for you, my doctors have been realy poor just lately so im grateful for the hospital,

dont let anyone talk you down , and getting mixed messages is no help, try and write things down as others have said, it will come right for you just keep the faith

brian

So i'm not the only one who thinks that your COPD nurse is a joke. I am so glad that you saw someone decent.

You cannot just use this new inhaler until you feel better. The rate at which your lungs deteriorate is to some extent up to you. A big part of that is taking all meds as instructed, not just when we decide to. As several of us have said, it takes time to build up inhaled steroids to a therapeutic level. If you quit using the inhaler, then get sick, it can take one to four weeks to build up on that inhaler again, by which time you are much worse off.

You have a permanent and progressive disease. Although i never stopped using my inhalers (only because the coughing was so awful w/o them), i am a shining example of what might happen if one chooses not to obey lung docs. Had i stuck with the 1 neb med twice daily, 4 times daily when sick, orders from 11 yrs ago, maybe i would not now have to spend 6+ hours daily on 3 neb meds 4 times and 2 rounds of a lung pounder machine. If you want to have a chance of walking the braes whenever you want, do what this better medico says. I have no life & it's a huge struggle to get anywhere before 11 a.m.

Margaret, it's up to you to ask for help from your daughters. They are at least as likely to say yes as no, especially if you use the magic sentence: i need your help, and the help i need is just for you to go with me on medical visits every now and then. Don't give them a chance to make up some stupid kind of help such as organizing your closet. Say exactly what you need. If they say no, they say no. Gotta try.

The same goes for your employers. Find things that work for you, none of which will involve aerosol cans as those are lethal to lungs, and take them. Vinegar & baking soda ate your friends tho you don't want to inhale them, either. I can use 7th Generation cleaning wipes but fond everything else in that line useless. The Meyer line of products is bad because they use a dangerous chemical to make their scents last for days. The modern reusable special cleaning cloths are great on their own or damp, 8r with vinegar water.

Order several different shapes of N-95 masks. Read the instructions on how to open & use them as they aren't intuitive. The good ones last up to 200 hours. Wear them while working. Don't ask if you can wear them, just do it. You will need to try them out at home while cleaning there, to get used to them.

Nebulizer is the hand kit that goes with a compressor. You can't get neb meds in the UK or US without a RX so don't buy the machine ahead of time. Oxygen also requires an RX, based upon certain conditions. Once you go on it full time, you will probably never come off of it. People do now manage to get oxygen on their own via the internet, but they don't understand the harm they can do to themselves by using it when they do not have a clinical need. I feel certain that if you needed it, the person you saw today would've ordered it.

Take charge, Margaret. We're all rooting for you.

yes i was worried about that as my chest is so wheezy and i know myself that i just cant function and that is so so unlike me i always push on as long as i can also if the last two lots of steroids have not worked that is such a worry to me as always did before. I really didn't know you can go to the hospital thought you had to do everything had to be done through the doctor. Thank you

Oh right i see just i always thought was best just to use inhalers when i got bad or i would get immune to it, and thought i was doing right thing. You are so much more used to this than me, to me i feel i am dying when i am like this i am so scared, last time was 2016 felt this bad so guess i have been lucky till now but maybe thought would last in my mind.

Well took your advice i actually asked my daughter if she would take me to another Hospital appointment i have on Saturday. Wasn't going to as i thought if i can make it to bus stop okay then its just matter of going into town then catching another bus there straight to Hospital entrance but when looked at the weather forecast it is to be more rain, sleet and windy so did not really want to walk to bus stop if was windy, so yes now i don't have to worry about that. Also with the cleaning products, i have 5 houses i clean and have got in touch with them to say i need to use chemical free sprays from now on and that i could bring them but they have all said yes no problem so that's a start. As for the mask looked on Amazon will look strange tho the only problem is the house with all the animals and all the hair in the house. So thank you

I also see what you mean about not getting out before 11am i thought was just me felt like that when i wake up feel awful and think Oh God i am getting worse but as time goes on a bit its better, guess that is why i asked my daughter to take me to Kirkcaldy on Saturday as i would have to have left at 9am to get there in time

Hello again Margaret I see from your letter you must come from fife Over 3yrs ago I was admitted to hospital with pneumonia and since then I have been seen every 3 month or so at Ninewells On going in weight and oxygen level is taken then go into a booth and take a spirometry test which is hard going sometimes If a scan or x ray is asked for then it is off to get oneWhen all that is done a respitory consultant will see you and because he will have all the information of the tests you have just taken he can make a decision on what medication to give you and pills you might need If tey dont work very well he can change to some thing else but one thing for sure you will get the best available I still see my copd nurse but the consultant told me last visit DO WHAT I TELL YOU and no one else Perhaps your gp could refer you to a respitory clinicSorry for the long winded letter Hope things improve James

Yes James from just outside Dunfermline . I never get a spirometry test done now i used to always get that when had an annual review. Perhaps because when it fell so low in the 30s 3 years ago i was in shock and i did not know it could go back up. But that is the reason i don,t know now how she said on Tuesday my percentage was over 50% How would she know that, unless they can get that from the thing they put on your finger. Thank you James

Margaret

james sorry to but in but your so right about docs and hospital, iv given up seeing our respetery nurse at surgery i just take notice of hospital im going to pain clinic on monday and waiting for scan results

brian

yes Brian l agree with you they just want to write a prescription and get you out of the surgery but to be fair it was my gp that diagnosed me 10yrs ago when Ikept getting infections and out of breath He was my regular doctor so knew something not right but unfortunately he left when changes were made at the surgery and now I never see the same dr twice and think they know all about you from a computor screen There is just no dr patient relationship anymoreJames

james this must be happening all over the country, i have friends in newcastle and down in dorset they all say the same thing, you are put through to see a nurse she dosnt look up from her computer, then if you need a jab or a persciption she has to go through and see the doctor, i have always supported our local doctors but im afraid its gone to pot, i dont kow whos to blame but iv lost confidunce in them. i had been to docs when i was coughing up blood sent for xray then told they would keep their eye on it, sadly 3 weeks later my lung colapsed and it was then hospital took over,

bria n

My god Brain that is awful but to be honest doesn't surprise me now, takes so long for tests ect then by the time they come back and you see the doctor again it has got so much worse. Well i always get that to when go to see the nurse, a few years ago the one i had was so good and helped me so much and i only ever saw her but she left and since its not been the same. The nurse now on last 2 occasions has went to find the doctor for prescription then to ask questions then again to listen to my lungs as she thought was something which turned out not to be, then as i said before the next nurse i got the following day told me totally different information it is a worry the more times i go.