Having a bad day, appreciate any advice

Hi Folks,

Not posted for a few weeks as have been awaiting some results and specialist appointments. Towards the end of last year my Local lung specialist advised that my Emphysema is so far advanced, there was no treatment or process that could be offered to alleviate my symptoms. I was told I had reached then end, there was nothing that could be done, and in a nutshell, Im done. I did push, and I got referred to the top lung reduction/ Lung Valve specialist up in London, for a second opinion.

So, I went along did a whole new set of lung volumes, Blood Gases, Shuttles, CRT/CT and so on. This was in January, and today was my final meeting where I would learn if indeed there was nothing for me.

In a nutshell, there is nothing they can do. My disease is so far spread through so much of my lungs that lung reduction simply isnt a viable option. Neither do my lungs have the capacity to respond to lung valves, as my lungs are so badly diseased there is no one area they could target with valve technology, the specialists words being' Whilst we could put valves in, basically all that would be doing is to block air going to one bad bit, and just funnel it round to the next 'bad bit'.

My exact words at the end of my meeting -' So Im basically buggered?' To which the Doctor looked down, and mumbled a few platitudes about getting my meds up to scratch, and having yet another shuttle walk to see if I'd be getting any benefit from ambulatory oxygen. I was sent off for a few basic blood tests, and was told that they would discuss my case at a meeting next week, but that there would be nothing new they could offer.

Ok, So Im not yet 50, both my lungs are damaged beyond repair, and the specialists have washed their hands of me. No mention of Lung transplant, nothing, the door has been shut, and my case closed as untreatable.

I am severely depressed as you can imagine, I simply dont know what to do next. I am unable to attend pulmonary rehab, as a long term chronic pain in my right thoracic area has led to me being sent home from 2 different rehabs, being told that I couldn't continue as my pain wasnt under control.

I have purchased a treadmill, and am using it daily, along with a bike which I do a few minutes on. I am doing all I physically can to stop the spread of this disease.

Guys, simple question, what on earth do I do now? Any advice most gratefully received.

Take Care

Cate.

16 Replies

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  • There's Not Much To Say Really .... Don't Think Your That Done Yet Your Writing Is Good You Can Still Do Exercise In A Fashion ... Japan And Google Translate Seem To Lead The World On Dodgy Lungs Research <; google.co.jp/#hl=ja&sclient...

    Like They Say Your Never Done Till Thay Close The Lid ..... Let Me Know How You Get On All The Best :)

  • Catel, I am so sorry you have received this news :( but you seem like a fighter and by making sure your medication is up to date and taken as directed, using your treadmill and bike, eating healthily (or as much as you can do) you are taking the right steps to maintain the level you are at now rather than ignore everything and eveybody and go down the slippery slope.

    Everyone here, I'm sure, will offer all the emotional support you need right now even if we aren't able to offer you medical advice. :) We do care for each other.

    Please contact the BLF Helpline who will be able to offer more assistance and advice.

  • Hi Catel, I with very severe emphysema 2010, im also sailing in the same boat as you the Brompton couldnt offer me any further treatments and basically carry on taking the inhalers as per COPD regime...so i just take 1 day at a time doing what i can as and when . Im too not yet 50 and still feel " WHAT NEXT "?

  • Hi Catel, I'm in that same boat as you and Kazza, we're not sure where we're going but hope to have a laugh along the way! You're doing everything right Catel, with the exercise and still getting out and about. All we can do is keep taking the tablets/inhalers and try to keep ourselves as well as possible, one day at a time, try and see it not so much as a disability but more of a challenge. All the very best to you. Libby

  • Hello, so sorry you are having a down day, sincerely hope you get a good day soon, you deserve one, or many!

    The thing that alarms me about what you have said is the door closed to a transplant as it hasn't even been mentioned. Why not? Why wait for the doctors to bring the subject up? It is your life so get fighting for it. Ask why you havn't been considered for it and say you want to if that is what you want. You have a right to every possible treatment available, as long as it can do you some good so ask ask ask.

    I think what you are doing regards to the exercise is marvelous and I applaud you. You say your having a down day but I think you are an inspiration to many and I see positivity in your writing and someone who is not giving up.

  • Hi Cate

    I know I say this a lot but please give us a call on the Helpline - 03000 030 555 - have a chat with one of the nurses - also Helen, our counsellor, is here to offer whatever support she can.

    Thanks

    Mark

  • I'm realy sorry to hear you were not even given the option of a transplant Catel, do you know what the reason is? you are very young to be in this position, I totaly understand your depression and I think the effort you are putting into exercise will help it along with improving your lung function,as Kazza and Libby wisely say , you can only take one day at a time and take care of yourself, let us know how you're doing, hugs Carol x

  • Hi Cate, as so many have said, one day at a time. It takes courage to face your challenge enough to come and share it with us - we are all in the same boat in one seat or another and we care for each other. I'm on end of life palliative care and keep my ' terminal meds ' in a cupboard next to the bed. Keep on keeping on, find things to smile at, there are loads of hilarious blogs on here. Above all you are among friends. Next time you smile come and share it with us but don't wait til then, when you need a caring understanding place to stand, come here and we will all stand together.

    Best wishes,

    Chris

  • Hi cate, allow yourself to feel the warmth and support here, you must be feeling so anxious and worried, and tomorrow you may get on the treadmill, begin to eat something nice, someone once said to me 'live in the moment' the last 10 minites are history, the next 10 minites is the future, try and stay in the moment cate, keep up the exercise, do something that is good for your soul, what sort of music do you like? Books? Magazines? If you can give yourself a little treat, thinking of your, and will say a little prayer, peace to you x x x x

  • hi there Cate hey know what you are saying seems like you are walking the same roads I have been down as you explained I was relating ...and cts ect and brompton hospital they said that I did not have cancer ...but my lungs were and are scared all over and I wondered even then what now?no one had answers.I thought maybe a lung transplant maybe the only option but why was that never mentioned to me!though the thought of that worried me, as some times the body rejects organs ect; to this day I have had to live with it .and on my own.little by little I can do less and less.as breathlessness has become much more than breathlessness.....I wish I could be more cheerfull about your situation to pick you up a little..what the good people have said to you is true on this site.....I didnt fight I always thought that i would be looked after by the medical doctors Ect.12 years hence.waiting still for answers .and no matter how bad you feel they always make you feel as though you are over reacting....but Cate do somthing then you wont blaim yourself for doing nothing..my best wishes go out to you Gbu

  • How upset you must be hearing that you are not a candidate for that kind of intervention... great that you must be helping your breathing by keeoing active as poss. maybe also ask doc about the powerbreather mentioned by another blogger to strengthen the breathing muscles, and a flutter or acapella to help you get rid of mucus. maybe some herbs like lobelia that help shift mucus too. It is not just the meds and equipment that help,. it's also active breathing techniques, helpful food etc. I hope you do ring BLF and get some counselling too - it will help. Thinking of you xxx

  • Im so touched by all the amazing thoughts and messages you guys have left for me. I do so love this little community, and though at first it appears I only turn to the blogs when Im totally at my lowest , I think that also speaks for itself.

    I take much comfort in knowing that even one person has experienced the things Im currently going through, and the positive attitudes I find in every post.

    Being basically housebound, I Rely totally on my closest friend who looks after me 24/7, and never asks for anything in return. She has been my rock, but she is also my worst nightmare that I fade away and leave her alone. I try and smile and stay positive, as she has been through a lot in her life, including losing both parents, and having no family left alive. Whilst I rely on her for the physical tasks, I look after her affairs,bills,daily bits and bobs, and in 20 years we have never (Honestly) never had a raised voice to each other. Its this that I am , I think, most scared of leaving as my legacy, I just want to be here until she goes, and not having to live in isolation.

    These 2 possibilities I guess are felt by a great many couples, and obviously everyone seems to battle through. After a day like yesterday and the last 10 years of pain and breathlessness, It takes a huge drive to even open my eyes in the morning, let alone get up and live, but I do so for Mandy.

    Thanks again, so much, for all your caring messages, and I will certainly be battling on. If I can even slow the progress of the disease a little, then Im on the right path. I think another reason for feeling down is that when they said quit smoking (Which I did over 10 years ago) I was told that whilst my lungs would never get any better, it would slow the passage of the disease. But, every year, it gets worse, and I simply dont know what to do, I feel like Ive tried everything. I certainly dont feel Im dying, thats a positive, I just get so frustrated that this has been left for so long (Heck I was complaining of breathlessness 12 years ago, thinking it was the side effects of morphine I take daily for my rib pain), but I was just palmed off. So now, when Im told Its too late and tofar gone to offer options,.... and that hurts.

    Thank you everyone for your time and thoughts, have a great weekend

    Cate

  • Catel i am sorry you feel the way you do .

    When i was down last or the week before .i can't remember prop

    all i know is i was in bed and i said to the wife when i get to ill and i am sliding

    tell the docs to turn it all off .

    But she said no. As she said to me i have got. No say in it even if she got to do everythink for me and she ment everything.as if she did not want to do it she would not do it and turn them off .That is the type off partners we all got i hope

    so live live each day and live it to the full and let the next day come as well for get the past and live for the next day and the next .good luck

  • Cate Hi. Have a great weekend yourself and I'm sure I am not the only one you have inspired with your resolve and patience. I am so pleased that you have Mandy and hopefully she will have you for many years to come and you may be finding more power in yourself because of her. God bless xx

  • Catel I wish you all the best, i don't think I have anything really to say that will make you feel any better. I live in Northern Ireland and i seen an advert on t.v. one night, i only seen it on the once, it was for something i had never heard of before, and that is salt caves.Apparently in Belfast there is a man made salt cave, i think it's a room with salt on the floor, walls and ceiling, there are tiny particals of salt in the air which you breathe in, the particals are so fine that they penetrate deep into the lungs.this is supposed to help people with chronic lung problems. I read up about it on the net and it costs £30 per session, each session lasts for an hour,you just sit there and read or listen to music or talk. I have not tried it my self but i just wondered if it may help you in some way.

  • Big hugs Catel,do hope you are feeling a little more cheered up by now,with the lovely & helpful comments made by our friends.So glad you have your dear friend Mandy,to help & support you,I'm sure you are both a great comfort to each other.It sounds as if you have a good team there!

    I realy can't offer much advice,except to say,just live one day at a time,we all have to do this,& let's face it,there could be something quite foreign,that takes us in the end!!

    Love Wendells xxx

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