Admiring the courage of many

Hello everyone I'm new to this forum.I've been reading a lot for yiu guys post and I must say they are very encouraging it lets me know I'm the only one out here going through a really tough time in my life I'm 42 yrs old and suffering with many bigs in the lungs I've been diagnosed with Sarcoidosis in 2001over the years my lings took a turn for the worst I'm now suffering with repeating Psedumonas, Bronchaectisis, COPD I'm on 4 liters of oxygen also had just about every antibiotic from azithmycin to Meropenonm to Poly Mixin B sometime they seem to be workong on the hosptial but once I.leave a d return home a week later I'm back to cough up this thick nasty mucus smh and they now saying over 50 percent of my lung tissue are gone just giving a little description of my situation. Just want to say I admire all those who takes the time out to post I love reading them and hopefully one day I'll read something to help my situation...

28 Replies

  • Hi hope4betterdays, welcome. Yes sure is a lovely informative and friendly forum. Keep your spirits up, take care and keep popping in.

  • Thanks so much Suzy6 I need a friend or ppl who total understand my feelings and situation family and friend are supportive but doesnt have no idea of the severity of my condition. I just need ppl who going through to talk to to let pinned up feelings go. Just you replying back put a smile on my face THANK YOU!

  • that was like reading about myself

    im 49 with copd bronchiectasis and pseudonymous which ive tried every antibiotic going but still have down to 27% lung and have my second assessment at harefield in january and offered a double lung transplant

    i found this site a few weeks ago and dont know how i managed without it the people are amazing

    stick around hun and keep going the healthunlocked family will help get you through it

  • Wow I sign up on the forum a few months ago and only read never post til tiday thank so much Mandy6513 its times where I really need my spirit lifted cause I feel alone at times. Me being on oxygen 24/7 not to many ppl wants to invite me places or take me out so most of the time I'm in the house stick in bed doing nothing but taking meds and watching tv it becomes a bit overwhelming.

  • being on oxygen isnt easy i know that....maybe people dont know how much you need to get out so tell them

    one thing ive learnt these past few months is you need to speak up im sure if they knew you elt the way you do they would be more than happy to give some of their time

    i cut myself off from everyone and its not healthy you will end up depressed so please let people around you know they may think its too much for you and thats why they arnt asking x x

    find your local breathe easy group there will be support there for you too

  • Hi and welcome never ever feel alone on this site keep popping in asking questions and if you have not realized it from reading our blogs we never let our chest problems however severe rule us we rule it.

  • Thank you for the encouragement ant64 I so need it

  • my pleasure and I do hope for better days for you I kept at it lost a lot of excess weight (50 to 38 waist in about a year but don't please ask how as I am still wondering it myself) I now look feel and am better.

  • Congratulations that another thong I'm struggling with my weigh drs are telling me I need to loose weigh in order to become a candidate for the donors list but I'm on pnedisone the steriod

  • yes the dreaded prednisolone I have ended up with acute osteoporosis of the spine thanks to them when I was on them in 1970's the doctor's handed them out like smarties then they just seemed oblivious to the long term side effects, now at least they are more cautious I only go on them for a week at a time if I get any flare ups.

  • I have to look into that I've been on themfor quite a long time now it has weaken my immune system that where I think all the infections in the lungs come from

  • might be best having a word with the doc about them I was lucky to escape Addison's syndrome I had been on them so long and such high dosage, if you are feeling drowsy a lot or just cannot be bothered about things (lethargy) then do so with out fail I got to that point before I tackled my doctor to get of them and I still have to carry my blue card yet.

  • Hi nice to meet you and welcome to the site. I am sure there are others on here who have Sarcoidosis and hopefully they will be in soon.

    You are right this is a great site with some amazing brave people. I have been here for quite a while and it never ceases to amaze me how people cope with their illnesses. We all support each other here and try our best to help and advise or even just to listen. No one is alone here and I am glad you found us. x

  • Thanks for the welcome Coughalot1 I'm.glad I found you guys as well

  • Hi Hope4 and welcome. Nothing the doctor, nurse or friends said to me after my diagnosis could lift me out of the black hole I was in but, finding BLF, chatting to Helen on the phone and joing this site did.

    I'd found a great place where I could voice the worries and fears that I didn't want tell my family. The relief I felt was undiscribable. I'm eternally grateful to the people on here for it. Stick with us, you won't regret it. x

  • Smiling at your freat gesture ti stilck around thabks so much I need a place like this

  • Smiling at your great gesture to stick around thanks so much I need a place like this...sorry for the typos

  • Hi and welcome , as u have probably seen we all have different problems associated With the lungs, but for emotional support we are all the same. Everyone has great tips and advice. I have Alpha 1 antitrypsin defiency Z phenotype, mine is genetic and progressive and I'm only 41, so I know how u feel, as does everyone on here, they are all fantastic, it has turned into my extended support family. take care x Sonia x

  • Thank you Sonia for the warm welcome

  • Sooo sorry to hear your ailments....glad you get some encouragement from this forum....I do too. I hate the "muscus" thing and i get it very often these days. I keep blowing bottles in a bottle.....learned about that on here :) You take care of yourself :)

  • Bottles in a bottle heu anythong that will help can you please explain

  • Sorry - should have read "bubbles" in a bottle - does that make sense now???? :) You have to forgive me, I am rather ancient. ....Oh dear.

  • Hi hun so sorry to hear you are going through this tough time. Do you have a good dr/nurse who shows you self management (such as clearing lungs of mucous etc)?. You may also want to ask your dr to give a mild antidepressant so you feel better in yourself. Getting out and about with friends/family may make you feel a lot better and it is good to get exercise (ie walking around) anyway. Best wishes we are always here to talkxxx

  • Thank you Jenss I'm trying not to get anymore meds add to the list of the ones I'm already taking and its quite a list smh

  • I hope you are not stuck in bed because of the need for oxygen. If so you are entitled to free ambletory portable cylinders that can either be carried on a backpack or a wheelchair etc. Regards Rib

  • I'm so glad we can be there for each other. Some days I wake up thinking god not another day and then I read how hard others have it and realize I'm not so bad off. So its nice to know there are other who rely on this forum as much as I do.

    Kim xxx

  • Just popping in to wish you a very warm welcome.

    I'm so sorry for your troubles. There are a handful of people in the same boat as you and can offer ideas on getting rid of that mucus.

    I hope they come on soon to help. Im so pleased you found Mandy.

    If they haven't seen your post why don't you call the BLF helpline? They are so brilliant. They are experts and can guide you on many things to improve your life. Also they have counsellors to help prevent you getting depressed. I think this us a big risk for you at the moment.

    Wishing all the best for you. P

  • You are not alone we all have the hidden disabilities that some people do not understand if they cannot see it. PMA

    Be Well

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