Royal brompton

Hi guys hope you are all sotted for christmas. Got my last presents in london last tuesday. Went to royal brompton for my ct scan.. boy they are quick!!! It took me longer to get the gown on than have the ct.. they now want my plf done there. They had the refferal scans and notes but they want their own. Things have gotten worse my tumor is growing and the emphysema has created more lil pockets! Now it is transplant only. They said i would not be a great candidate for lung reduction or the bell therapy..so back to the waiting for the call...ooh got an appointment at dri in cardiology as my heart rate is still high and the ectopic beats are still there. So tired all the time..now the pain has started in my left lung where the tumor is..and to top it off the health authority have now decided in their wisdom to make me pay £82.00 per month for my meds as i earn too much..im on benefit esa dont get paid from work as on healthcare so how in the world do i earn £161 more than allowed??? Give me strength..why do we pay ni? Isnt it for the hospitals so we can enjoy medical care when needed...just makes my blood boil when you work all your life pay our taxes for what??? Sorry..less of my moaning..i have got to wrap the last present now. Have a fantastic christmas and hope that 2017 is better for everyone!! Merry christmas guys.. oh btw..when all my surgery is finished i will be doing a run/walk marathon in aide of the british lung foundation to raise money to help more people break the cycle of diagnosis and no help!!! Thank you.. will be putting the all the info onto fb when i get the go ahead.. all my love and best wishes for everyone going through illbess and for the carers. X

43 Replies

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  • Sending love and good wishes to you too dash and hope things do improve in 2017. What a lot you are going through and what a star you are.

    Do try and get help to fight your corner regarding the £82 per month, sounds like an awful lot.

    Take care and have a good Christmas.

    At least you are being seen at a very good hospital. Pete has an appointment at the Brompton in January. Xxxxxxxxx

  • All the best for pete..it is a great hospital. Hard to find parking though..even with a disabled badge...lol i am a tough old bird determined to see my 50th which is in april...hopefully with new lungs.. xx

  • Hi dash, I'm a bit confused about you paying £82 per month for your meds. Is this for prescription charges? If so, you can get a yearly certificate for something just over £100 ( i used to get one for years before I hit 60) this gives you free prescriptions for a year. You can use it for meds from your docs dispensory, the chemist or the hospital pharmacy. It would save you a lot of money. I hope that helps.

  • Yes it is i was getting free prescriptions with tax credit but they cocked up and now i have to pay. I just cant afford to pay out over£100 in one go. I even have to pay for travel to london too for treatment. Its all pay pay pay...even wen i am on pip.

  • You can get pre paid prescriptions for shorter periods or by monthly direct debit.

  • IF you do have to pay for your prescriptions (and I don't understand how if you are on ESA you have to pay?) get a yearly payment card. This is an up front fee and you receive a card which means you pay no more payment for any prescriptions.

    Just looked it up and is £104 per year or you can do it for 3 months.

  • They say i earn too much..161 to be precise...bloody government is rediculous. Will check it out. Knrw about it but like i said i cant afford the full hundred in one go..maybe see what the 3 monthly one is... thanks guys you rock..x

  • Hi bevvy, I used to pay for mine every three months, as I couldn't afford to pay all in one go.

  • Hi knitter how much was it for 3 months. I have over 10 items per month would i still qualify?

  • Is £29:10 for 3 months. Doesn't matter how many items you get per month. If you get any more than 2 items will save money!

  • Thanks bevvy

  • Wishing you well with all that you're going through, and hope you have a magical Christmas with your sons.

    Sue x

  • Thank you sue x

    I am a fighter and i will continue to fight. Stay safe and keep strong x

  • Never give up ✨x

  • Hi Dash. What an inspiration you are.

    I hope that you have a brilliant Christmas and wish you all the luck in the world for 2017.

    Hope you get your medication problem sorted out.....all seems so very wrong!

    Take care. Pam XXX

  • Thanks pam. It is but who am i just another didly donk!! Lol. Merry christmas x

  • 😂😂😂 XXX

  • What a great post,so happy for you😊

    Get that medication problem sorted though,something not right there😳

    Wishing you also a lovely Xmas,& great beginnings in the New Year,hugs Wendells 🎄🎄🎉

  • All the best to you wendells. Hope you get everything you wish for. X

  • Hi Dash ! Just to cheer you up, I pay €144 for my meds every month and this amount increases every year.

    Amazing to think that you're already planning a run. That's the kind of spirit that will carry you through your surgery and into recovery. Well done on the presents also. As of now, I still haven't bought a single one.

  • Lol thanks billiejean_2

    It isnt fair is it when we pay our taxes and still have to pay to survive an illness that we did not ask for or want!!

    I did all my shopping online as not strong enough to fight my way through queues in town.

    Poor hubby went into town last saturday and was in a queue for 45 mins for a parking bay. He swore he would never go again in car..was gonna go on bus!! Lol.

    Hope your christmas will be filled with love and joy..all my best wishes to you.

    Debijaine(dash2711) x🤗

  • Thank you dash ! Your reply has encouraged me to brave a shopping centre this morning. Have to get present for youngest son's birthday and hopefully, pick up some books and CDs while I'm there. And my very best wishes to you and yours at Christmas.

  • Sending you all the best of everything, and hope you can look forward to a brand new future. It is most unfair to be told to pay like that. It makes my blood boil too when I see so many not far from here abusing both the NHS and Social Services and getting away with it. I just hope someone on here can help you work round the prescription charges.

    You have a good Christmas

  • Just had to buy a 3 month pre payment as i have no meds left and i must admit i have been naughty and not taken them everyday just every other so they last longer.. i know i did wrong but when i cant afford them i will make them stretch till payday...🤔

  • All the best jennifer-S

    Hope your christmas is filled with peace and good will. Have a fantastic new year 🕊

  • Thankyou so much dash. Won't be for lack of trying if I don't:-)

  • I'm full of admiration for your cheerfulness and positive attitude. May 2017 bring you all you wish for.

  • Thank you copd16.

    Life is short but shorter for us so i intend to be as nutty as i always was before this horrible disease took its toll.

    Have a fantastic christmas and all the best for 2017 x

  • Hi Dash, what an inspiration you are to us here! You're very brave with such a positive attitude that I feel you'll get on just fine.

    Hope you can get these prescription charges sorted out. It's a ridiculous state of affairs expecting you to pay.

    Here's hoping you get all you wish for in 2017 & in the meantime have a very merry Christmas 🎄 🎉🎊🎈🎁

  • Thank you jessy 11

    Life is too short to be a grump..

    I wish you and yours a very merry christmas filled with lots of love and laughter...all the best for 2017 xx🕊

  • Wishing you all the very best for 2017 Dash - hope you have a wonderful Christmastime with your family :) :) xx (from another diddly donk 😁😜😁) xx

  • Thanks jaynair. Hope you have a great christmas too.

    Received letter from royal brompton today going in on 9th march 2017.

    Gosh it seems so real now!!

  • You so deserve the best outcome! I really love your spirit it springs off the screen, so I wishing you lots of everything but mostly health and happiness. Can I ask why they failed to diagnose you and what it is that actually caused all this ? Would it be linked to a genetic fault? Royal Brompton is super I am up for a trail there in the coming year I have A1AD alpha one antitrypsin deficency, was diagnosed at 45, like you end stage, fought back with a lot of 'attitude' and survived! They gave me 2 yrs to live age 47...its been a real ride but like you keep focused , positive, it hit me out the blue and I had 22% lung function on being diagnosed and into yr 2 because unlike you I smoked..nobody gave me much or any info on this and I was left alone to dangle I moved from Manchester to Devon near the Coast in that state, quit smoking and started to walk again it was unbelivable ...like being re born I got very lucky I meet and married someone here as sick as I was too..been together a decade this coming year, blessed totally...my life angel. I would love to chat to you..pm me , can relate in many ways and your age..I turn 56 this year so a big message to you is there is 'lots of hope' I am thinking about my best way forward although I do well I know the old wind pipes are frankly screwed...but I keep going and like to be around like minded people..it all helps us honey x Bless you xxx

  • Wow thank you..you story touched my heart. Would love to talk with you..it seems we are 2 strong women who are fighting to live and loving the fight as it makes us stronger.

    My diagnosis was a real shock as i was taken into hospital because i was coughing up blood after numerous months of chest infections..with anti biotics and steroids which never seemed to work. They did a chest xray..ct scan..mri then told me i have influenza b.no mention of the tumor or the emphysema until after 8 days in isolation i was finally allowed home but before i left the dr said so you know you have emphysema right? What? He was shocked when i told him i never smoked but i did grow up with my adopted parents who were chain smokers.

    I had no idea where this came from or even if it was hereditary. I left hospital that day in total dissbelief and shock.

    I think i have adapted well to my diagnosis. It will be 2 yrs in feb and i have out lived their expectations..but now i am really struggling with the breathing lark..lol i think breathing is a little overrated dont you?? Hehe.

    Just glad thar after march i will hopefully be able to go back to work and do the walk/run marathon for all the sufferers and their families and even for those that have fought so valiently but lost the battle.. i will do it for them.

    My deepest respect for you flo1. Would be great to do the walk together..for us..for them gone before..and for the wonderful carers..because without them we would not have the strength to fight on.

    Merry christmas to each and everyone on this wonderful site..i now consider my extended family...

    Love dash x🕊🕊

  • If you have cancer you are entitled to free prescriptions, diabetica and people with thyroid problems also get them free.

    It's about time people with COPD got free prescriptions.

  • Too right azure_sky..things really need to change more people die from copd than from thyroid problems..how can they justify that!!

  • Hope you get that call soon dash. You should appeal the £82 ( get someone to help If you don't have the energy - definitely doesn't sound right! Wishing you a very happy Christmas and all good things for the New Year x

  • Thank you dedalus. Have a great xmas and even better new year.. paid for the 3 monthly one..so now picked up my case of meds!!!lol.

  • Why can't the English NHS be like the Scottish NHS and not charge anyone for prescription. So unfair.

  • I know it is but things wont change whilst we sit by and let this government wreck our lives. Have a great christmas nottobad.

  • I hope you have a great Christmas dash2711.

  • Thank you i will try..all the best to you and your family nottobad x

  • Wishing you every joy

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