Hope you all doing as well as you can, I have just noticed a post unsure of whether johnny has COPD or not, it was 2 months ago, so did not put question to you all, I feel the same way, whether I'm in denial, I have liver disease not alchohol related, in 2013 I had my first endoscopy (camera down throat) to check for varices veins in esophagus, doctor who performed it said no varices, but I had 2 lesions which he told me he took 2 biopsys to see what they were, that was Jan 2013 in Feb 2013 went to bed woke up 3 days later in ICU lost 5 pints blood through mouth, after that I started to have breathing problems, doctors said it was due to all the blood loss, gave me iron tabs which I have to take rest of my life, when iron levels rose to normal I still had breathing problems, went back to doctors, just gave me a pump didn't work it took months of pleading for something to be done, I went to see nurse at surgery she doesn't specialise in COPD she does all kinds of checks, put on symbicourt 200 with steroids worked for a while but not know, I honestly don't know where to go from here, I did smoke gave up ten years ago, had no breathing problems when smoking or ten years after, just happened directly after bleed, sorry this has gone on so long, but am beginning to be scared to go out, any advice I will appreciate. Annette
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I am so sorry that you are suffering, but all that I can suggest is that you ring the BLF helpline ...they are open during the working week, but as a previous post said they have been very busy because of the pollution alert in the UK, so you may have to wait.
I also suggest that you make an appointment with your GP and tell them of your concerns again and see if they will give you a referral to a specialist. Don't be afraid to stand your ground.
Am so sorry don't know what to say but wish you well. Only I agree maybe write it down, make appointment with doctor and ask for referral.? Basically I agree with Knitter. Hope all goes ok.....x
Thanks for your kind comments, yes am going to make app: fed up with being fobbed off all the time, I used to do lots of walking, its now a trial to go out, anxiety is unreal, then my doctor told me to walk briskley, he has no idea, I tried that once and nearly passed out, I'm laughing as I type this as I can't believe he said that, I can only hope for the best. Annette
Will let you know what happens, I have to laugh sometimes, they can be so stupid, one person said to me once, tell a person who does not have COPD or breathing issues to breathe through a straw and run up and down the stairs, then they will know what it feels like, I forgot to tell GP that!lol. Annette
Annette, YOu need a better answer that just "walk briskly"! You need to have your liver seen to urgently., but someone who knows better. Ask for a second opinion, you are entitled to have this seen . Don't be fobbed off! Mic
For you comments will certainly make appt: with gp I am going to demand to see consultant, I know its not heart problems as have had ECGs and a scan on that both tests normal. Annette
I understand what you are going through. Its so hard to find a good doctor and one that will take your concerns at heart. I was diagnose with copd 2 years ago I have never had any problems with my lungs not even a cold in my lungs now I have all this medicine to take. Hang in there and try to write everything down find a doctor that will listen to you and to take you seriously. I'm still not 100% sure about my diagnose. I think its important to do your own research Good luck
I'm so sorry I can't offer any advice, have you been tested for Alpha 1 A D ? It must have been very frightening to wake up in ICU, I hope you get some answers soon Annette, hugs huff xxx
hope you are well, I would love to go for a brisk walk too, and your right they don't know what its like, I used to walk everywhere without thinking about it, now cant walk from one room to the other.24hrs a day on oxygen, never mind could be worse xx
For your unfortunate illness that puts you on oxygen, you must miss those walks, we really don't know what we have until its taken away from us do we hope you can get some respite. Keep well. Annette
Annette, It seems a long time since your first diagnosis with your liver. Have you had anything done about this particular problem? I wold think this is still related to your liver, BUT I am not a professinal. Your best bet is to ask eithe r the helpline :03000 030 555, or your GP on Monday, and prehaps be referred to a new specialist of the liver. I think you have to act quickly to get this liver sorted. Sorry to be concerned in this way, I feel i you need attendance quickly. Mic
Thanks for your advice, I do attend liver unit at kings college hospital in London, every six months for scans on liver, blood tests, and a consultation with my Heptologist who specialies in liver problems, I also attend Medway hospital in kent where I live, I go there also every six months for endoscopys, blood tests, and consultations with my gastroenterolgist, I am going to bring this up again regarding breathing, when I had chest x ray they did notice small amount of damage on one lung, I think this sealed the deal with COPD, but I am not happy I know I don't know much about this condition, but I did not realise that it could escalate so quickly, Tuesday I have appt: with GP am going to demand to see specialist, and also mention to my two liver doctors, I want some other checks done as well, I will certainty let everyone here know, one of the liver consultants I see on 20 th of this month so not to long to wait. Thanks. Annette
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