British Lung Foundation
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Doctor appointment

Went for my lung doctor appointment a few days ago I even brought my portable oxygen so I wouldn't get to much of a lecture as I haven't been using it for months. He just encouraged me to use it when I go for my walks. He also told me to walk faster, not sure why as I am not in a hurry to go anywhere. I also told him I quit taking Advair as I felt I didn't need it anymore. He asked me to remember two years ago and I told him to remember that they had removed part of my lung unnessairly and then sent me home with a nasty staff infection which almost killed me and left me in a coma so I wouldn't forget it anytime soon. Anyway I don't have to go back for another year. Unless of course something else happens so got my flu jab and left. I guess you can't ask for better then that.

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I am so sorry you had all that happen to you in hospital. So how are you managing now with part of your lung removed? Is it easier to breath now and is your other lung ok? I have bronchiectasis and I'm to see specialist on the 5th October, I only had one lung damaged for 4 years but through prolonged chest infections over the last 10 weeks my other lung is damaged. I take ipratropium steri-neb and ventolin nebules I have only been clear of the chest infection for two weeks and I think it's coming back already, but this time when I'm using my liquids for the nebuliser I'm not getting much relief at all, I've been on the neb most of the night. I see my GP this afternoon a different one as usual and I don 't have a lot of faith in them now as I was being treated for anxiety in the first place when I knew it was a chest infection starting, so when they decided to give me antibiotics i was only given amoxicillin low strength for one week, this happened three times. Then after having the scan it showed up that my right lung was now damaged I was put on a further two lots of antibiotics which were stronger for longer. Plus I have been on loads of steroids too. I have a feeling when I go this afternoon I'm going to have to insist on stronger antibiotics. Do you think they do this because of the cost of them. I had my flu jab the other day and have to go back for another one for pneumonia, hope that does the trick. I'm taking my two granddaughters to Majorca at the end of October do you think it will be a problem. ? Thanks for listening. Xx

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They are treating you for COPD not bronchiectasis. The feeling of an elephant on your chest is the fluid and the infection. The antibiotics that you have been given are obviously not the right ones,, not in the right dose and not for the correct period as the minimum time in bronch is 14 days. You also need to be working very hard every day to get that mucus out.

The ipatropium and ventolin are designed to open the airways, useful in asthma and COPD and can be used to assist in bronch but useless against the infection which is giving you so much trouble. It is no wonder that you are feeling no benefit from them when your lungs and airways are full of mucus and infection.

Similarly, steroids are a standard treatment for COPD but not always in bronch unless you have them to relieve additional asthma symptoms. I have never had them and my bronch specialist says that they can mask the symptoms of an infection, giving a false impression that it has been cured.

This needs knocking on the head now. You say that the neglect of your condition has led to damage in the second lung. We really do have to be our own advocates and insist on the proper care. There has been a dereliction of duty here and without the right treatment more damage will occur.

Can you call your con's secretary and explain how bad you feel. Try to get a cancellation appointment before you go away. It won't be very good if you are away with your grandaughters, the infection gets worse and you do not have the right abs with you.

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My lung doctor has me on NAC and Daliresp which seems to keep me out of the hospital and my lungs pretty clear. Before I went to the hospital I wasn't on oxygen had to be on it afterwards but am only on it occasionally now and stay at 95percent. I haven't been to the hospital in 18 months now. When I need antibiotics I usually ask for a zip pack sometimes I have to take steroids with them but I felt like I was getting a chest infection only once during the last 18 months. I have severe COPD.

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Hiya Roessner I m sorry it's took so long to answer you, I went to the doctors today and asked about the medication that you mentioned to me, he agreed that I will probably benefit but he said that he wouldn't be able to prescribe them for me and that the specialist would have to sort that out for me and so he gave me Ciprofloxacin and Prednisolone till I see the specialist on the 5th October. In fact he wouldn't even give me any sleeping tablets either he said it wouldn't be safe in my condition at the moment. It's only been two weeks since my last infection, and this is happening over and over. I told him about the weight on my chest and he said it was because of the mucus but again he wouldn't give me anything to get it up and said the physiotherapist would help me out there. When you said you have severe COPD what does that mean? I know all of these conditions are progressive but I'm still not aware how much worse they can become. Are you comfortable on a night? Do you get much sleep? The main thing for me is not being able to lie on my back, can you? I hope that your condition has slowed down now and will not get any worse, surely with the right help and treatment we can all live a bit of a normal life again. Thank you so much for the information you gave me and I will ask the specialist about this medication. Please take care. Xx

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Hi Maureen sorry you weren't able to get started it does take awhile to work has to get in your system. I take one tablet of over the counter melatonin for sleep and I sleep like a baby. I was using over the counter mucus relief when I use to have a problem with it but haven't had a problem for awhile. I sleep with a bunch of pillows. Would like to get a bed that lifts up but can't afford it.

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Also Roessner I forgot to mention that like you my husband has serious health problems too, in fact I have been his carer for so long, and now I need the help but I do have family and my eldest daughter helps me loads so it's not a totally useless situation. Xx

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My husband lost both of his legs due to diabetes but still going strong. Not sure why they classifed me as severe maybe because I almost died. I seem to be in better control now and took myself off a lot of the medication they had me on.

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Roessner if your husband requires looking after and you have severe COPD how on earth are you both managing ?I hope you have a good family living beside you to help with everyday tasks. You should be entitled to carers at least for a few hours every day. I mean my youngest daughter is 32 and has a sever back problem since she was very young and we have managed to get a couple of carers in for her four hours ever day, the rest of the time the family help out. Also she applied for a shower to be put in her bungalow because she couldn't get in and out of the bath, all this work was done with a grant. They widened the bathroom door so she could get a wheel chair in and out and it's made life much easier for her. You both should also have this type of help with your husbands condition alone. My daughter had one of those beds that lift up and down but she said it wasn't as comfortable as her old bed, so she had it for a couple of years and gave it away. She replaced it with a much cheaper bed and mattress and she says it's the best bed she has ever had. I wouldn't care but she paid monthly for the other bed and had only just finished paying for it when she gave it away. She wouldn't take any money for it cos she said the person she gave it to was in more need then her. I sleep with loads of pillows like yourself because at the time when my daughter gave the bed away I was able to lie down on my back no bother, it's typical that I could have done with it myself now but like you I can't afford one. Never mind no good crying over spilt milk as they say. I am going to buy these melatonin tablets as soon as I get the chance to see if they work as the doctor would not entertain sleeping tablets for me. I really don't understand how I'm awake after so long with a very small amount of sleep, but this constant weight across my chest frightens me so much, In fact I'm so frightened I sometimes don't even put the light out. Tonight I have put a electric fan right up to my face to see if it helps a little, I think it's more phycological the thought of air blowing at me makes me think I can breath a bit better. I'm pleased you are feeling a bit more in control but you must have had a mountain to climb to get there. I'm wishing both you and your husband well. Thanks for your reply and advise. Take care. Xx

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My eldest son lives with us as he isn't married he spends most of his time at his girlfriend s house but likes to keep a room at our place in case she gets mad at him he goes to the store for us as I find it to energy zapping and it causes me a lot of anxiety. My husband still works but from home he gets depressed but what can you do you just have to make the best of it. We haven't slept together in years because of my breathing I just feel to constricted. If anything were to happen to either one of us we would be in trouble but think our family would then step up. Our youngest son wanted us to move to Colorado but I told him I wouldn't be able to handle the elevation. We live in the US. Today I pretty much slept all day but think it was because of my flu shot. I did get out for a walk though. I hope you will sleep well tonight

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Maureen another med that I take that might help you is Mo tdlukasr

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Montelukast

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Thank you Roessner is that to clear mucus? Cos that's what I'm having a problem with, do you put it in nebuliser or is it a tablet. It makes no difference as long as it help. Thank you.

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It's a tablet and I think it does I use to have a problem with mucus and no longer do. I sleep with a fan on sometimes as well. I cough up a little in the am I don't know if the combination will help but sure made a difference for me.

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I'll will definitely ask about it, I to have a fan on and off all night, hot then I put it on then it's to cold but it also helps my breathing, wish I could lie down though sick

Of sitting up all night . Thanks for reply. Xx

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Hope you have gotten some sleep. And that you are feeling better.

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Hiya Roessner now I'm on the steroids again this weight is lifting off my chest I'm not so anxious, I think I've had probably about three hours sleep last night, sort of half here and half there sort of thing but at least I did get some. I was wondering though Roessner you mentioned about a portable oxygen that you use when you go out, did you have to get that through the doctor or the hospital ? Cos I would really love to have something like that as an emergency, cos when the paramedics came out to see to me a few weeks ago that's what they gave me along with other meds and I felt better very quickly. Or are they like gold dust ? I hope you have had a good nights sleep and that your feeling a little better than you have been and hope you didn't have a bad reaction to that flu jab. Xx

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I have a portable and a concentrator at home which sits in my bedroom and has a twenty foot hose I asked them for the portable as it was easier then taking tanks. The doc. Put a prescription in for it I pay about 40.00 a month for copay. When it was hot

I lent it to my sister as she gets cluster headaches from the heat

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Oh thanks for that information Roessner I'll ask to see if the specialist will let me do the same or my doctor. I've been really bad today, started out good and got bad then worse, tried to do to much and suffering now. Not even the steroids are working the terrible weight back across my chest again, of course I knew the antibiotics wouldn't, they should know by now that five days isn't enough anyway. Walked across the road not far to my daughters thought I was going to collapse by the time I got there. Can't walk very far at all, not even up the stairs without puffing and panting. I just think if the oxygen is at least here I wouldn't have to phone for ambulance. Thanks again for your help. Take care of yourself. Xx

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I am surprised that you're not on oxygen I have problems with stairs and walking myself I've been trying to wean myself off of oxygen but I haven't felt well since I went to the doctor I slept all day one day after sleeping all night I think I'm feeling better today but we'll see I have to go out and clean up after the dog I kind of overdid it yesterday though I had to go to the bank go to the store and then went out and got my husband lunch he loves it when I do that I can't imagine doing it without my oxygen now just feeling to out of breath right now. Hope you get to feeling better soon that melatonin works so well for me I hope it will for you as well. I just can't function if I am tired.

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Yes this is what happens we over do things when we feel s little better then bang back to feeling bad again. Wish I could get my husband to go out for lunch, he's never well either, he sleeps all the time with head injury, and I do t sleep at all, great isn't it. If I go out for lunch it's with my eldest daughter usually. Trouble is ive always been in the kitchen making for everyone and all of a sudden I just can't. Well I'm going g to have to just try to slow down and not push myself or I'll never get any better. I will mention those tablets when I go though I'm willing to give anything ago, have a good night and god bless you and your husband, cx

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You can buy those in the store usually where vitamins are. The NAC u may have to buy online as not many stores sell them at least not here. I use to get them at New Season but find it easier to buy online. They aren't prescribed. They just help me and my lung doctor recommended them for me. My husband doesn't go with me for lunch. He refused to use a wheelchair which I can't lift anyway. He has a sore on his stump and it gets irritated when he uses his prostecics so he has only been out twice in a year. I know what you mean about cooking too went over to my sister's not ling ago so I could get some home cooked meal lol.

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Oh I didn't realise your hubby doesn't go either, it's just not fair is it. Right about those tablets I'll go and get them straight away, thought I had to go through the doctor but that's great. Thanks again. Xx

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No problem you have a good day.

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How was your doctor appointment today?

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Thanks for asking Roessner, I had another x Ray which showed some boarder marking on my right lung, but the specialist was confused because he said he had the c t scan off a few years ago when I had mild bronchiectasis in both lungs, and then he had the result of a further c t scan which had been done at a different hospital not that long ago saying mild, but this is not what I was told, he agreed there is some differences of opinion here as the x Ray I had taken yesterday showed otherwise too. So he is going to send me for another c t scan as soon as possible so he can determine for himself what is going on as my symptoms and condition is obviously a lot worse. I also had several bloods taken so he could out rule other things that can go wrong with lungs. He told me when I'd finished the antibiotics I am on which I only had one more day left he said don't take anymore if I'm just getting the infections straight back then there not working anyway. He wants to see how long it is before I'm needing seething else, what I have no idea. What ever the problem is I really hope he finds out soon cos it's really getting me down now. Last year I could go for walks with my dogs and walk up the stairs etc and now I can't do anything, so the sooner he finds out what's wrong the better. Hope your doing ok. Love Maureen xx

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Sounds like they better figure out something. Don't know what's going on with me I have been so tired since I went to the doctor haven't been going on my walks my niece made me go out the other day and I could barely stay awake. Did you ask him about the meds and oxygen?

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Just watching tennis now wishing I could play

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Wish I could too.

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I did ask about them and he said he would have to figure out what exactly is going on with me before he would suggest anything, and he said according to my latest results I wouldn't need oxygen anyway, however he did say they were contradictory to what he could see is happening. So I'll still have to wait before he decides weather that's for me or not. Roessner have you had your bloods checked lately, as it sounds like you need iron tablets, sometimes when it's low it can take a good while to get into your system to feel ok again, but in the meantime make you exhausted, go and get that checked as early as you can. Let me know. Xx

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I was thinking about taking iron supplements to see if it helps. Weird though I was feeling fine before I went to the doctor actually I feel fine except for being so tired. I always am thinking it will be something serious. What did he say about you not being able to sleep can you at least take the melatonin for that?

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Nothing at all, hecfusmissed me

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Sorry not concentrating very well, no he said nothing at all, like I said not even my antibiotics. I don't know anything about this consultant yet so I hope I've choose the right one, I mean he didn't mind me asking loads of questions but just seamed to say no to most of them or we will have to wait and see. I think he just wants to see what's actually going on first before he decides what I can have. X

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Hiya Roessner I will ask my consultant when I go about what you are on to see if it will be any good for me, I'm on the Nebuliser again already and was only on it an hour ago, this is so frightening, I've never needed it as much, unless what I'm taking isn't working for me anymore. Thanks for your reply and take care. X

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I thought COPD was bad what I have read about your condition is terrifying. There was a time I was going to the hospital so much the nurses weren't even sure if I had even left. Had to be on fast acting anxiety meds because I literally could not breathe. My husband wanted to drive me but I was so terrified I had to go in an ambulance. I am doing so much better now but the fear is still there it was so bad for awhile I just really wanted to die. I am just hoping this isn't the calm before the storm. I hope your doctor can help maybe the medicine I mentioned can help you as well. Let me know what he says. The NAC is over the counter. The Daliresp did cause me to lose a lot of weight but once my body got use to it that stopped. I was overweight so now I am not. I am 63. My husband also has health issues but is able to help with meals. Otherwise I am afraid we would be living on sandwiches. Do you get any help from family or friends?

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Brisk walking so you get out of breath counts as exercise which is good for you. My SATs drop like a stone if I walk without oxygen so I always use it. Maybe yours drop too.

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Roessner did I mention that I asked my doctor for the meds you told be about to get mucus up but he didn't want me to give me anything till I see the specialist, well I definitely going to ask him about them and I'm seeing him on Thursday so won't be long now, I'll let you know. Again thanks for your help. X

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