can it get any better am so low

well i have had enough, of consultants doctors all of them . went to have a ct scan 2 weeks ago . every 6 months they said i need one , they found 6 months ago nodules on upper left lung a mass they said , i recvied a letter today after my scan . they are saying they are not sure but think its aspergills now , as well as my emphyemsa sick of it all ,

26 Replies

oldestnewest
  • Be strong, thinking of you

  • thank you

  • Every day above ground is a bonus longdays thats the only way I can look at bad days in order to cope. Of course human nature is such (or my human nature anyway) that I take the good days - and there are some aren't there- for granted. You will be fine and overcome this feeling. I agree that it doesn't help when professionals dither about. Be kind to yourself and take all the medication that only you know is helping you. Except for the spiriva (I have emphysema) I find the rest of the medication is hit or miss xx

  • thank you lavender i try to be strong . but past few weeks seem very low lost a lot of weight , which makes me feel down . i want to be what i was if only it was that easy , xx

  • (((((((hugs))))))) for you longdays, and I hope you find the silver lining to the cloud hanging over you at the moment. Can I suggest you give the BLF Helpline and talk over your fears with them ?

  • thank you i just get down like every one on here . good days bad days , i will phone blf thanks again elian

  • Sitting in my chair with the cuppa my wife just made looking out the window at the sunlit houses opposite, thinking about trying to get outside into the garden today. When I make it, it will be the first time I've been outside since before Xmas. How I wish I could find some words to help you feel as positive as this thought makes me.

    The thing is you already know everything I could say - its just temporarily overshadowed, again, but you will come out of it.

    There is something you could do for me. When you do get to feeling better, as you will wont you, make a brief list, doesn't have to be long, of some of the things that have made you smile or laugh - reminders of some of King's jokes are allowed. Then come back and post some of them for us to share.

    We are all here for you and we will need you to be here for us on another day.

    Best wishes Longdays and the best of luck.

    Chris

  • it will pass me being down am sure , thank you for your kind words i know am not on my own chris ,

  • Hi again Longdays, I didn't make it to the garden. Fact is I didn't feel able to tackle the stairs - but I walked the corridors til I was out of breath, rested and then did it again before going back in my own front door.

    I'll get there - try and keep your chin up love, thinking of you.

    Chris

  • Hi longdays

    Sorry to read you are not feeling so good - we are here at the helpline to chat and listen - we also have a counsellor called Helen who can offer emotional support - call us on 03000 030 55 or email us at enquiries@blf.org.uk and we can arrrange to call you back.

    Best Wishes

    Jo

  • thanks jo x

  • Hello longdays,

    I can appreciate that at the moment you feel pretty low. That's natural, as you have just been presented with bad news. Most of us on this site have serious conditions, which are permanent, and in a lot of cases progressive. I know that seems bad, but it does not have to be. We here have found out that the Gps, unless they take a particular interest in our diseases, are not not very well informed, and rely on information they get from the NHS database. The speciality nurses are in the same boat. So it is up to us to fight for ourselves. The way we do that is through improving our personal knowledge of what is ailing us, finding out about new treatments and procedures, and then getting the professionals to hear what we have to say.

    As you gain knowledge, and various treatments and other support systems get you settled, then you will feel better in yourself. As time goes on and you find out what bits of treatment suit you best, you will feel better. They will ask you to go for tests, and provide samples etc. Do these. These tests should enable the doctors to provide you with the right drugs to get things under control and stabilised. Then you can start to fight back.

    You say you have emphysema and possibly an aspergillosis infection. Lots of people on this site know about emphysema, and other aspects of COPD. As far as emphysema goes, just ask questions about what is giving you concern, and you will get answers that are useful, sincere, and usually based on personal experience. As far as the fungal infection goes, check out this site, I appreciate that it is not the easiest site to navigate, but the relevant information is there.

    aspergillus.org.uk/newpatie...

    Read about it, then when you go to see your doctor, or consultant, you can ask useful questions, and expect serious answers. If you appear to be informed about your problem, they will be less inclined to fob you off with nothing answers, and treat you with the respect you deserve.

    I would, however get your house checked out for mould, particularly in places where damp may be. Especially dangerous is black mould, often found in bathrooms and laundry areas. These moulds often set of allergic reactions which subside quickly when the cause is sorted out.

    I hope this is helpful for you. Keep your spirits up. Ask for help when you want it. It's here for you.

    Breathe easy

    Johnwr

  • thank you for your advice johnwr i will ask and know am not on my own thanks again

  • Such positive support carries us through the dark days and out of the other side.

  • Hope you soon feel better longdays. Wishing you well, take care.

    Syl

    xxx

  • thank you syl you to xx

  • We are all here for each other, good days and bad days. Lets hope we all have more good than bad ! :)

  • Hope your feeling better soon. Great advice as always from everyone.

    Kim xxx

  • Am thinking of you and cannot really add to what others have said. Except to stay positive, because what other option is there?

    Lynne xx

  • It is hard to diagnose certain lung conditions and because many mimic others with just a slight difference here and there, it can take many many months for a correct diagnosis. Dad was going back and for to the doctors for nearly a year before a nurse, by chance, noticed his finger nails had changed shape and that prompted various tests which resulted in an ipf diagnosis. Photos found since, prove that dad had it before he even started to have any symptoms.

    It is unfortunate and very distressing that we have to go through times like this, but there can be light at the end of the tunnel and things can get better. i sincerely hope you turn a corner and get the help you need, be it from the blf, your surgery or from friends and family xx

  • Hi Longdays sorry you are feeling so down. I find though that when you are aware of feeling down the worst of it is past and there is light at the end of the tunnel. Really hope so. Its not easy but try and stay positive. Be kind to yourself and indulge yourself!

    Bev x

  • Hallo there! So sorry you are feeling so down,hopefully tommorrow may be a bit better.

    It is good for you to have somewhere to vent your sadness and frustration,we are always here to listen, and maybe offer a bit of advice and comfort.

    I wont add anymore, as you have had plenty of it!

    Please let us know how you get on.

    Hugs, Wendells xxx

  • Sorry to hear you feel low, just take hope in that when all the tests are done you should have a diagnosis and treatment to make you feel better physically , making you feel better in general hopefully.Chronic illness diagnosis is not easy to come to terms with especially the initial shock. I'm sure you will soon pick up but you do have a right to feel down ,it's quite natural, hope you soon feel a bit better.

  • it can be treated with antifungal meds I think. Looking forward to when you are bouncing back up again :) x

  • Sorry you are feeling low, is there a Breathe Easy group near to where you live, ask the lovely people at the BLF. Spring is coming, the sunshine will help. Take care Longdays.

  • Longdays - I haven't commented so far but other people have. If you are feeling low and depressed, just go through the blogs. There is so much wonderful advice. You must soak it in and read it over and over, because the people on this forum genuinely care about you. You have a bad illness but sadness and depression wont help. Thinking about you so much -- love Annie80 x

You may also like...