I can not believe it !!!!!!!!!!!!

Hi all,

I said I would write again, good or bad, well, my title just about sums it up! I took my husband with me as I said, for an appointment at 11.15-11.30 this morning, we were still waiting to see the specialist "Boss" at 2.20, mind you I did have an x-ray done in that time so I shouldn't really complain.

I have had a mixture of emotions since this afternoon, ranging from, intense anger to frustration to tears and also feeling very depressed, (I could have sworn then).

The specialist said my x-ray is clear except for 2 right back when I was first ill, ( they showed "fuzzy bits", his description not mine ), my chest sounds clear, he doesn't know why I am whezzing, coughing, breathless, as all tests have come back clear, he also is writing to my doc to tell him that if I can't breath properly or am struggling in general or with chest infection, he doesn't want my steroids put up to help me as he doesn't think they are helping, the thing is he isn't giving me an alternative to take, he wants me OFF THEM.

I asked him, if he doesn't know what is wrong with me, why am I taking all this medication, his answer was, "I don't know"!!. Can you believe that man!

He said to me "You aren't showing any signs of struggling to breath at the moment", how I never swung for him I really don't know, I replied,"Well, I have been sat outside for the last 3 hours", he couldn't answer that one either!.

David, my husband also told him that he has seen me struggling to breath and also friends at work but he wouldn't have it.

He said something to me on the way out about getting physio to take a look at me to work out some exercises that may help kill me. Haha!

When I come off the steriods, which isn't going to be easy, I have only been able to get down to 5mg a day, I really do struggle alot and can't walk up the stairs without stopping and using ventolin, I find it hard to do nornal household chores and need to rest every so often, I can't walk our dogs at all, everything just gets a lot more harder to do, even now I can only carry a couple of bits of shopping, David needs to ferry me around in the car when the steriods get too low and at the moment because it is too cold to go out and walk for too long.

We have come to the decsion that when I am really ill again and can't breath because my meds have been stopped, and I am in hospital, then he will need to sit up an smell the roses!!!!

I am just so fed up with it all, 3 years of not knowing and then he as much as says "you're imagining it all".

Take care everyone and wrap up warm, it's a cold one tonight, I've got my hot water bottle ready!

Jan xx

22 Replies

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  • Is the Boss chap a pulminary consultant ?

  • Yes he is. Why?

  • He claims to be, I'm sorry but I don't want to see another specialist (like him)for a very long time!! xx

  • Most consultants send people for a CT scan to check for emphysema as it doess't show up on Xray. Mine did and a few others on here have too. Have you had a CT scan ?

  • Yes, I've had a couple of CT scans done over the last 3 yrs.

  • Also Jan, you don't mention if you've ever had the proper lung function tests, not just the normal ones you get at the docs? Libby

  • Every time I have a hospital appointment I have to see a chap who gets me to blow short breaths and the hard and long breaths into a machine.

  • I have never yet given a proper sample of air because I haven't got enough puff and usually end up coughing too much.

  • Have you had an Echocardiogram Jan?

  • Have you checked your heart rate when you have trouble breathing? A rapid heart rate can make your breathless. Try taking COQ10 (at least 200 mg per day) and see if that helps. If you don't have an oximeter please buy one. It is the best barometer of your current condition. I no longer listen to the doctors because if I had I would be dead by now. More COPD patients die of congestive heart failure than from being unable to breathe and COq10 and Fish oil can help with that and taking some Vitamin D3 will help you as well. The prednisone can also cause shortness of breath in some people (like me). I've been on oxygen 24/7 for almost 7 years now and have figured out what works best for me. Only you know who you feel 0 not this dopey doctor.

  • I am sorry you feel so unwell. You have the opportunity to ask to see a different respiratory consultant within the NHS system. I suggest you speak to your GP about this and have a 'fresh start" with a different consultant who can give you a second opinion.

  • im sorry you are going through this a year after i was diagnosed i saw another specialist who said it was asthma not copd! i was still on usual meds for copd, AND under copd nurse team and pulmonary rehab etc, the nurses knew he was wrong, i was sent for reversability tests which consultant lost 2 yrs on sent for another rev test and guess what yes he was wrong! so they are not always god and they do get it wrong hun! im now severe stage, maybe if he had done his job properly i wouldnt be as bad ! FROM 08 to 12 to get sorted is a long time!

    good luck to u hun xx

  • Hi Jan

    You might want to give enough time for letter from cons to arrive at GP and then have a discussion with you GP asking him to inform you what the cons has said and explain the cons reasoning. If you and/or your GP are still unhappy, and you have access to another resp consultant, then you could ask to see someone else. Check out beforehand who is available. When he says he doesn't know why you are taking all the meds when you do not have a diagnosis, does that mean he didn't prescribe them. If not perhaps this is a question for whoever did prescribe them.

    Wish you good luck and hope you soon get the treatment you need and deserve.

    Love C xxx

  • The specialist and his assistant over the last 3 years have between them both prescribed them for me! He prescribed arithromysin? for me last year to help with inflamation on the lungs and he also prescibed loratadine and another similar drug for the same inflamation, within 2 weeks of started the medication I had broken out in a severe rash from head to toe, consequently, I had to only stay on the loratadine but I still come out in a rash.

  • I am so sorry and angry for you. What a damn nuisance. I wonder if the BLF helpline can give you any advise on where to go now. I would agree with cofdrop and talk to your GP about the consultant and his letter. Good Luck TAD xx

  • As Ashwood says, you're entitled to a 2nd opinion, so ask your gp to refer you to a specialist lung centres. I think the nearest to you would be Heartlands, Birmingham. They'd have state-of-the-art diagnostic equipment to get to the bottom of things. Btw the proper lung function tests involve going to a lab and doing a round of 4 or 5 different pieces of equipment, takes about half an hour in total, including one inside a telephone-box shaped cubicle (with see-through sides!). Doesn't sound as if you've had those.

    love, ff x

  • ask for a 2nd opinion = first specialist i saw about copd told me i was coughing as i had post nasal drip - stupid **** even tho i knew the cough was coming from way down in my lungs. After the tests it was so good to see him eat humble pie and he did admit he was wrong and he couldnt understand why! Then he made my day by telling me he was leaving the hospital and going abroad - next specialist was a lot better thank goodness

  • Yes get a 2nd opinion you could not possibly get anyone worse than that.

    The first consultant I saw told me I had emphysema and it was my own fault because I smoked and it would be no good asking for a lung transplant because that was only for people who have never smoked. Needless to say I would never see that man again although he is still working at the same hospital many years later. I have spoken to many people at RH and Breathe Easy who all have the same opinion of him as me god know how he has kept his job this long.

    polly xx

  • How frustrating for you jan. After all, you know how you feel and your husband sees how you are but the doctor does not live with you 24/7 so how can he know how you are all the time?! You should get a 2nd opinion and see if someone can't be a lot more helpful. Good luck to you and let us know how things go. Take care. xxx

  • jan please go for a secound opinon because if your breathe less cant get up the stairs there is clearly somthing wrong and it needs checking also i would have been inclined to complain to pals because if he said he didnt know what was wrong then he clearly should not be giving you numrous medication that is clearly in my opinon mal practise and negleacence has he clearly has no idea what he is doing i do hope you can get to the bottem of it and that so called consulatant goes back to training because if this is the case god only knows how he passed his exams in medical school. i do hope its ot in sunderland hospital lol because thats where i have to go when im ill ha ha

  • I have copd and my respiratory nurse is wonderful and compassionate...but I went to see a locum about my anxiety and not sleeping, I have been using amatriptilene, which has been wonderful, iget agood nights sleep with limited interruptions from pain. It has also helped with my depression and anxiety...would he give me prescription for me ..NO...he decides that its all old fashioned we dont use that anymore and just wouldnt listen to what I was saying..he gave me citalopram which is an ssri and has lot6s more side effects than the other...After some investigation, because my mum was put on it and she passed out and kept fainting and her Dr apologised and said I couldnt give you amitriptilan because the company Actavis wanted to push the new drug and they had been given instructions to use citalopram instead.. The medicval profession is a money making machine and their is bribery and coersion to push money making drugs. We need to take back the peoples NHS because it is slowly being turned toward the American model which has best healthcare in the world, but only if you can afford it. Excuse my cynicism but I have a lot of experience with the system.

    Take back the NHS!!!!

  • Hi everyone,

    On half term break, as usual I'm ill, had an appointment with my family doc to explain about my specialist appointment and it turns out that I have a chest infection and I'm now on antibiotics for next 2 weeks! Lots of coughing, almost all the time actually, even when sitting, not feeling too good this week.

    He totally agrees that I should get a second opinion so thats what I'm going to do, will have to be out of my local area because only private specialist is the one I have been seeing on NHS, I don't think I will go there again!!

    Need to feel fit by next week and not coughing as I'm taking my GCSE maths, it will be great if I cough through out exam!

    Anyway, best make the most of the remaining week.

    Jan xxx

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