Recently diagnosed

Hello everyone

My first time on here, but I have been reading all the blogs which help because I feel so alone. Excuse me if I go on a bit.

I was first taken to hospital New Years Eve last year with breathing problems I know my blood gases were really low and my pulse really fast, they released me next day saying they were treating me for a blood clot and gave me Fragmin. The following week I had a CT scan, when I rang the doctors secretary she said everything was fine.

In February I felt ill again and went to the doctors (locum) who sent me for more blood tests xray, but later that night I took myself back to hospital this time thay gave me Seretide and Spiriva 3 days of steriods and a week of antibiotics.

Not one of the doctors told me I had severe Emphysema, in fact they ask me loads of questions about going on planes etc. The only reason I found out was because of the the letter the first doctor wrote to my G.P. Also two years previous my G.P sent me for extensive tests blood, x ray I even had a camera down my throat to find out why I had lost weight, nothing was said then either.

Then to add to things the receptionist at the doctors told me I could'nt have Flu and Pnuemonia jabs until October, I'm just recovering from double Pnuemonia, and was told by the practice nurse I could have had the Pnuemonia one anytime of year.

Sorry I'm just trying to find excuses but surely someone should have spotted it.

29 Replies

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  • Thank you Rose

    I'm so glad there is somewhere like this to get support, my consultant is very clinical and cold I think she was absent the day they were giving out people skills. I'm always refered to as Kimmy by my family obviously I'm Kim. xxx

  • Hi Kim, you do not have to see the same consultant you can see whoever you want.

    My first consultant told me I did not have asthma for which I had been treated for many years but I had Emphysema and it was my own fault for smoking and there was nothing he could do for me it would kill me eventually. You can imagine how I felt, and I lived with that for a long time before I needed to see him again.

    Needless to say I never went back to him (he is still there) now I have a very kind and considerate consultant who explains everything and is very aware of my needs and feelings.

    Think about going to your Docs they will be able to give you a list of consultants in your area.

    See if you have a good practice nurse at your docs, they can be very supportive and ask the docs if they can refer you to Pulmonary Rehab,controlled excercise can help a lot.

    Take care

    *polly

  • Hi Kim

    Welcome here.

    So sorry for the trauma you have endured, you can I believe have the pneumonia jab any time of year. * The flu jabs for the coming season start around October time, it depends on the surgery my gp surgery offers them to vulnerable patients (that includes those with damaged lungs) you need to get the flu jab once a year.* The pneumonia jab will be one off although sometimes this is boosted later in life. Hopefully now you know of your diagnosis you are under a respiratory consultant, if not ask your GP for a referral.

    *Check recommended procedure with BF helpline Monday-Friday 10 am to 6pm

    03000 030 555 blf.org.uk/Page/Helpline

    All good wishes Zoee

  • Hi and welcome :) Val

  • welcome kim

    I have a son called jim

    Pnuemonia jab does not stop you getting Pnuemonia otherwise I would not have been in hospital last year with the fiendish thing on my discharge notes.

    having said that you could check out

    blf.org.uk/Page/Helpline

  • Thanks for all your comments.

    I have been put forward for PR just waiting for a space. I saw my consultant wednesday, and she told me the Pnuemonia had left scarring and my lung function tests were rubbish, she then talked about lung reduction surgery and if I'm really bad as I get to 60 she will recommend lung transplant I'm 53. So I've gone from being quite well to this in nine months, its know wonder I'm depressed.

  • Oh Kim so sorry, The PR course will help you a lot in learning how to look after your lungs and help preserve them, hopefully to prevent / avoid further lung infections and pneumonia. Also check BLF's home pages, Living with a lung condition and their dvd living well with copd. Hopefully by the time you are 60 you will have been successful in slowing down the progress of emphysema and can avoid the lung transplant. Try to keep well by avoiding others who may be infected with a cold or the flu virus.

    All Good wishes Zoee.

  • Welcome Kim. Best advice I can give is read, research and educate yourself as much as you can and try to take some control in managing your illness. Then tell them you want a different consultant - I did when my left and was replaced with a man I just could not feel comfortable with. Best wishes.

  • Thanks everyone

    I am reading as much as I can, I cant wait for the PR so I know exactly what I'm doing.

    The hospital at home team when I had Pnuemonia were great and showed me a few breathing exercises, and at the moment I feel quite good but I felt like that it April then was hit with Pnuemonia, having said that it was my own fault I had it so bad it was three weeks before I did anything about it. I did'nt understand the severity of my conditions, so it took a good two months to get over it, only positive I have is I've not had a cigarette since I was first in hospital in December.

    KIm xxxx

  • Well done for staying off the cigarettes - you see there are some positives in having pnuemonia!!!

    You could ask your GP about having some antibiotics at home to take at the first sign of an infection, as most of us do.

  • Welcome Kim, I can't help but wonder why some people go into the medical profession. Hope you get sorted soon.

  • Welcome Kim,

    You will find many lovely people here, all happy to share advice and help any way they can. PR will be very beneficial hopefully for you so that is something for you to look forward too. Many lung diseases are difficult to diagnose and is often a process (often long) of elimination. You are well within your rights to request a meeting with your Practice Manager or GP to look through all your medical notes or even request a copy. They can charge a minimal amount. We did that for my dad as we felt that he had been neglected and we found out lots that helped put things in perspective.

  • Thank you all again,

    I feel much better knowing I'm not alone. I have thought of requesting my medical notes because they really did seem at a loss as to what was wrong with me, nobody said well you have Emphysema so this is an episode. The first doctor said it was an infection and my own G.P was unconvinced it was Emphysema. But I've got to try and be optimistic even though all I have is negative thoughts. xx

  • Hi Kimmy59,

    Welcome from me also.

    Hope you feel a bit better xxx

  • Its a welcome from them

    & a welcome from me kim

    WELCOME X

  • Welcome, there is a lot of help and advice here from real people

  • Thank you all so much for all your advice, I will keep you all up dated, I bet you cant wait. xxxx

  • Hi and welcome Kimmy. Marilyn X

  • hello................

    i hope this gets you on the ri8ght road now its only the other day i posted myself how long its took me to try get somehing fixed with my own docs as they thought it was just a chest infection for a long time !............

    may i say i hope you enjoy this forum as there are lovely people here who all pull together as one to help each other.......

    all the best Kimmy.......

    Roger

    xx

  • hi welcome :-)

  • Hello & welcome Kim,

    Well done for staying of the cigs since December thats really great. You will gain a great deal from PR you will learn how to manage your condition better, improve your fitness with exercise taylored to your needs, meet others with similar condition & you will find it improves your self esteme.

    Best wishes

    Jo :-)

  • HI kimmy and welcome - so sorry to hear you have had such a bad time reguarding the medical proffession some doctors really do need to learn some tips from the doctors on causaulty! They are some loverly people on this site though who can help you though and advise you so stay positive and take care.

  • Hi kimmy, welcome on board and well done keeping off the smokes!

    woodshaper

  • Hi Kimmy, Welcome to the forum. I dont post very often, but do read all the posts daily which have helped me tremendously to manage my COPD. I hope you get fixed up with rehab soon, I am still waiting as there seems to be a long list in my area. All the best.

  • Hi Kimmy, hope things get lots better for you very soon. Welcome to this great site and I am sure you will find lots of help on here. People are amazing and inspite of everything, have a great sense of humour too (yes, Gordon I do mean you!) Lots of love, xxxxxxxxxxxxxxxx

  • Thanks again everyone cant believe the response on here its great, and I will be following the advice given. xxxxx

  • HI Kimmy

    You must never feel alone.Try joining your local Breathe Easy group(details from the BLF).you will find that they have all sorts of information to share plus friendsip at there monthly meetings. Richard Cornish.

    BREATHE EASY = FRIENDSHIP

  • Hi Kimmy,

    like you I only found out by accident that I had COPD. I'd had a blood test, x-ray and Ct scan. I could not do the spirometry in the GP surgery because it was too painful. I ended up at the hospital for a lung function test where a medical -professional casually referred to my lung disease. I went numb and into shock for a week. That was in June and I am just starting to feel 'normal' now. still not quite where I should be. But almost. It has taken eleven months since the chest infection which started all this. The shock will pass and you'll start to make plans and changes to your lifestyle. Believe me life is still good and there's much to look forward to

    .Keep an eye on this site because you'll learn a lot of coping strategies and know that you're not alone. What you re feeling now , most of us have felt and know exactly how you feel. Be kind to yourself and allow yourself to be upset. I tried to fight all that emotional stuff and ended up on anti deps!! Have a good cry for a couple of days and then stand strong and make some positive changes. Good luck. x

  • Thank you for being so kind. I think your right I am in shock, I was just starting to get used to the conditions when I got Pnuemonia, and thats really taken the wind out my sails. I hav'nt worked so I'm only on sick benefit which is depressing and then I had my appointment with my consultant wednesday and she's talking about lung reduction and transplants. I'm very lucky I have a wonderful husband and large family, and even though they dont say anything I know they're terrified. I am going to join my local group and find some good excerices and just try to look after myself. xxxxx

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