Royal Brompton update

[Itsmeagain1]

Well everyone had more tests done including breathing and echocardiogram received phone call from them saying I'm very severe can't offer me anything except ambulatory oxegen so after 10 months of not smoking and putting up with sob since I did and waiting over a year for referral as my lung specialist kept of forgetting to do it 4 reminders lately I'm told sorry can't help you bloody wonderful I lost my husband's to cancer in sep this year now told nothing can be done for me I guess all I can say is why did I bother I struggle to breathe when I move I have had enough happy bloody Xmas to me 😭

[Damon1864 Volunteer]

I'm so sorry you didn't get the news you wanted, and I can certainly understand why you are so upset and annoyed. So very sorry to hear about your husband, we are all here to support you, if you need a chat or just to sound of you can always text me. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Itsmeagain1 in reply to Damon1864]

Thankyou I'm all of the above lots of people were saying when they stopped breathing got bad I'm wondering if I should of kept to some a day rather than none hasn't done me any favours feeling bloody angry he said I couldn't do all the tests I was picked up late not my fault might as well go back to the fags at least I could breathe then so unfair

[sassy59]

Sorry to hear that and condolences on your sad loss. It’s all too much sometimes isn’t it, the waiting and waiting for something to be done and then what? Absolutely nothing.

Stay in touch with us on this very supportive forum. We’re here for you. Xxxx

[Itsmeagain1 in reply to sassy59]

Thankyou sassy I so needed some good news

[sassy59 in reply to Itsmeagain1]

I know you did sweetheart. Xxxxx

[Alberta56]

So sorry you've had such a bad year. Life seems very unfair at times. I'm sure something can be done. Didn't they even suggest palliative care, which people on this forum have been talking about recently (and favourably.) As Damon and Sassy said, stay in touch.xxx

[Itsmeagain1 in reply to Alberta56]

Ambulatory oxegen that's it they will set up someone testing how my sats drop when I move to see what oxegen I should be on

[Alberta56]

Thank goodness they're doing something-pity they left you feeling so let down and disappointed.

[Itsmeagain1 in reply to Alberta56]

Giving me oxygen wasn't what I had in mind they were going to do valves appantly but I didn't complete all my tests considering the ambulance picked me up late I thought I had done well with the tests I did do wasn't my fault

[Hacienda]

I Remember feeling like you do a few years ago Hun. Especially as They couldn't do any more Procedures. I was on the transplant List for 3 years with not one Call, I needed 100% Match which didn't come along. So, I thought, OK lets get Stronger and Knowing That I possibly had a few Years left make the most of them. I Joined The Gym with my Ambulatory , (My Side Kick) , went to Rehab, was already doing a lot for Breathe Easy Group Exercise Classes. I know right now you can't do these things, But you Could Plan to do it for next Year. I never ever went back to the Fags, sorry bad choice. Make 2021 Your Year to be a Warrior and prove them that you can do it. Good luck Hun. Have a Lovely Christmas and I wish for you a Fantastic New Year. Much Love. C. XXX 👍💕🌠🌹🌹🌹

[Itsmeagain1 in reply to Hacienda]

Thankyou I'm booked for pulmonary rehab next year when it starts just such a waste of a year and what a awful year I've had I needed some good news yes maybe I'll be bloody minded and say to those doctors I'm better than u think just wanted some help

[Hacienda in reply to Itsmeagain1]

Of course you do after such a bad sad Year. Upwards & onwards now, look after you and prove them wrong. Be Brave Hun. Xxx💖

[Itsmeagain1 in reply to Hacienda]

Thankyou I will try but feeling very let down to be honest after all that effect and for anyone that used to smoke and pack up it was so hard to get still not good enough to help but try oxygen instead

[Gladwyn in reply to Itsmeagain1]

Oh please just go for it !! Be bloody minded and show those Docs your good for a few more years. Take Haciendas advice and encouragement. Don’t light up the fags again as that won’t help. Looking forward to following you in your progress. xx😃👍

[Itsmeagain1 in reply to Gladwyn]

Don't worry I didn't light up it was angry talk yes maybe I should go mad but theirs a fear I'll be told if your going to speak to us like that although someone seems to be listerning hope the top docs will maybe I'll get somewhere I have ciggies here from 10 months ago could of easily done it then I thought no I worked bloody hard to get off them I got bloody-minded I started after over 3 years of not smoking a few years back because of a stupid comment a nurse made your already done the damage I though oh ok after all that time no well done keep it up just got u have got worse but that's because u have already done the damage I was sooooo angry then this time I thought ok so I have unrealistic expectations have I that what a nurse told me the other day I thought I'll show u so ciggies still in cupboard 😊

[Gladwyn in reply to Itsmeagain1]

Well done. Stay bloody minded, it works best that way for your health. You have had some awful thoughtless comments from people who should have known better. Not nice at all! Still, you rise above it now and go forward getting better gradually. I’m keen to hear how your getting on. All the best xx

[Itsmeagain1 in reply to Gladwyn]

Thankyou right next I'm huffing and puffing wrapping up Xmas presents who would think just doing that would take it out of u I'll stay bloody minded if I can go forward dispite everything been said and bugger all done then I just hope they will help although consultant did call me a fighter then said we can't help u though I wish they would think how that would make me feel before they knocked me down anyway next year a new start hopefully wishing u a great Xmas and a better new year 😊

[Gladwyn in reply to Itsmeagain1]

Don’t listen to negative comments even from consultants. I’ve come across the rudest one going that upset me treating me like a piece of rubbish and also some shocking drs but it’s like water off a ducks back nowadays lol par for the course it seems though in an ideal world it shouldn’t be. Onwards and upwards is your course from now on and ignore negativity from anyone. 🍀💐xx

[Itsmeagain1 in reply to Gladwyn]

I will take no notice thankyou for advice seems I'm not the only one bless u

[Gladwyn in reply to Itsmeagain1]

😁

[Beachballs in reply to Hacienda]

Great advice ! Some ideas for me as well !! Thanks for sharing! x

[cofdrop-UK]

What a horrid time you have had and are still having. I am so sorry but please take not of dear Hacienda’s suggestions - I am sure, even though you can’t see it now, they will help. Wishing good things for you.

With love

Cx

[Itsmeagain1 in reply to cofdrop-UK]

Thankyou I know I was just seen angry and upset wasn't my fault I couldn't do all the tests the ambulance that took me were late it's unfair I'm going to phone hospital tommorrow find out if they were told I couldn't do all the tests because I was late but somehow I don't they will still offer me anything but can but try

[Lemon7]

What a time of it you have had, on top of an already horrible year. Best wishes to you for future, take care of yourself.

[Alberta56]

Hacienda's right. Hope you feel up to following some of her suggestions. Eventually. Do phone the hospital and ask them politely to make another appointment to finish the tests. (I'm always polite in first letter/ phone call, not so polite in 2nd, and escalate if needs be.)Next year has to be better than this year.

[Itsmeagain1 in reply to Alberta56]

I will phone I am always polite but that gets me no where I will hopefully get seen again I can only try my best as I have done so far I will try and prove them wrong I'm not giving up yet but I do need some positivity you are all so supportive wish my doctor's and nurses at my surgery were and the specialist were too they have no idea how awful it is to panic because your sats are low your BP goes up your ankles swell then you get told can't help you I wish I could give anything that's wrong with me to them then say off you pop get on with it see how they feel I wish

[winabago]

Don't give up, I have been there also, better things will appear, you need to adjust your thoughts a litle, and all will come around.

[Itsmeagain1 in reply to winabago]

Thankyou just needed a boost after losing my husband he was a fighter but lost his battle he received no help I just was so annoyed doctors don't seem to be bothered it's like u smoked can't turn the clock back or I'd be healthy and rich in some exotic country tanning myself if I could

[gingermusic]

Sorry to hear you did not get better news from The Brompton and I can well understand your anger and upset. However it is not the end of the world or your life, you still have a reason to be on this planet and it is now up to you to enjoy it as best you can. Make the most of what life you have go out and do what you enjoy do you have family you can visit? If not how about friends? There are loads of us on here who will be happy to talk to you and bolster your spirits so don't give up. Plenty of us are in the same position you are never alone. Love Ruth

[Itsmeagain1 in reply to gingermusic]

True my family are workaholics like their dad was I have 2 friends one takes me shopping as no bus in my village and I don't drive and my other friend moved back to Essex to look after her mum so I'm a loner at least I still my sense of humour but struggling to find anything to laugh at doctors seemed to have lost their empathy these days they don't realise what we have to put up with maybe if they did they might just not dismiss us as not able to help seems so final

[gingermusic in reply to Itsmeagain1]

One good friend is far better than being alone so make the most of her and always let her know she is valued a great deal. Just enjoy your life as best you can it is what I do, see nothing else for it. I having a quiet Xmas day with my one and only who is looking after me as I am not long out of hospital, and Boxing Day I am sorry but I having my son and grand children here to open their presents with me. Goes against the rules but after the year I have had it has been the one thing I have most looked forward to and as they are here every other weekend I see no point in worrying. I hope you will have company over Christmas even if only by phone calls maybe. Don't give up your life is very worth while so enjoy every minute you can. Will be thinking of you Love Ruth

[Itsmeagain1 in reply to gingermusic]

Oh bless you I hope you have a lovely Xmas I don't give up easily so I just phoned the Brompton a nice lady said get your doctor to e mail us to ask to repeat the tests as u were late and couldn't complete the last ones which was not my fault now I asked my doctor yesterday if he would e mail them to ask if it was because I didn't don't the tests due to being late all I got back was well we're wait for the letter the last one took weeks to arrive and my copy of that letter never turned up I wish people would realise that every single day I have to wait for somebody to get off their backside and do something I am struggling to breathe everytime I get up they may have all the time in the world they can breathe properly grrrrrrr

[gingermusic in reply to Itsmeagain1]

Oh bless you and how frustrating that your doctor will not fulfil such an easy request when asked to. You sound very much like me in so far as we sit here feeling that to get anywhere we have to do other peoples jobs for them. Try and remain relaxed about it knowing it will happen, get Christmas out the way and then hopefully things will settle down somewhat and we can all start over again and hopefully get some better results. I really do wish you well, take care love Ruth

[Itsmeagain1 in reply to gingermusic]

Thankyou so much I wish you a very very merry Xmas and 2021 will give all of us some much needed hope for a cure 😊

[gingermusic in reply to Itsmeagain1]

Wow that would really be something wouldn't it? Happy Christmas sending love and a hug from Ruth x

[Itsmeagain1 in reply to gingermusic]

That would be such a amazing lift if they can make a vaccine in 8 months then they can help more than they have been I'm ever the eternal optimist just dented a bit have a wonderful Xmas 😊

[gingermusic in reply to Itsmeagain1]

You as well and hopefully chat after its all over x Ruth

[Itsmeagain1 in reply to gingermusic]

I hope so bless you 😊

[Alberta56 in reply to gingermusic]

I like your wise words Ruth. I hope they comfort Itsme a bit.

[Itsmeagain1 in reply to Alberta56]

Thankyou for all the kinds words and support everyone on this site have given me can u take over and be my doctor's please 😊🤗🤗🤗🤗🙂🙂🤗🙂🤗 hugs to u all merry xmas

[gingermusic in reply to Alberta56]

Ah bless you, I hate to think of anybody being lonely or upset at any time of the year but Christmas always brings it home doesn't that that no matter how little we might have somebody somewhere is always worse off. I hopeful that all of us on here will have the best Christmas we can under the circumstances we are all under, and lets hope straight after the Government have the sense to lock us down once and for all until this virus is well under control. It is surely what we all want to see happen. Love and hugs to everybody, from Ruth

[Itsmeagain1 in reply to gingermusic]

Bless u yes stressful time for all of us yes agree to lockdown stop all flights in and out once it's looking like we have control no protests either hoping life can get better won't be the same but people need to work together have a wonderful Xmas Jackie 😊

[gingermusic in reply to Itsmeagain1]

Exactly fully agree you also have a wonderful Christmas Love Ruth

[Itsmeagain1 in reply to gingermusic]

🤗🤗🤗🤗🤗🤗🤗🤗

[Alberta56 in reply to gingermusic]

🧡🧡🧡🧡 xxx

[Itsmeagain1 in reply to Alberta56]

🤗🤗🤗🤗🤗🤗🤗🤗

🤗

[Ergendl]

Just keep putting one foot in front of the other and you will get through this dark phase. ((((hugs)))).

[Itsmeagain1 in reply to Ergendl]

I'll try

[Aingeful]

Oh dear, sending love and hugs. Hope theres some sort of light at the end of this tunnel!xxx

[Itsmeagain1 in reply to Aingeful]

So do I can't quite see what though

[Croydonia]

You are with the Brompton, which is the best place to be. They will do their utmost to help you, but at the moment you are overwhelmed with the news. Please put your faith in the doctors there, and if you join a pulmonary rehab group, it will be good for your morale and knowledge about lungs. This is a horrible time for you, but before too long, the vaccine will be available, and hopefully you’ll be able to get out and about to see friends. Please keep in touch with the forum. Best wishes to you.

[Itsmeagain1 in reply to Croydonia]

The Brompton have said we can no longer help I'm not under the Brompton anymore they have told me to see my doctor at my surgery to get amblutory oxygen that's it with the Brompton hospital almost felt like they wernt going to offer anything to start with I thought me being rushed out of breathe was so unfair the pick up was late I should of been given another appointment if after doing all the tests they said can't help at least I tried and at least so did they but they didn't

[Croydonia]

Oh dear, I’m sorry, I didn’t read your post properly. I’ve just been advised to go on ambulatory oxygen, which has depressed me, but the doctor said just think of it as another medicine to help you. I don’t know why Brompton wouldn’t keep you on their books, it seems very unfair.

[Itsmeagain1 in reply to Croydonia]

I thought that it wasn't my fault I was picked up late couldn't do all the tests had another appointment to check my heart out then told u didn't do the tests bye that's why I'm angry oxygen is not why I spent the last over a year for a referral and packing up smoking losing my husband after 42 years of marriage he got no help either given chemo tablets to extend his life being sick so he couldn't keep his food down they took his BP tablets away he kept on falling over he kept asking for them in the end well inquest will tell us what happened I suspect I know now my turn to be let down my trust in doctors has gone even my nurse before I was told said Jacqui seems to have unrealistic expectations that her breathing will get better nice with helpful comments like that and don't need

[HighGables]

Your better than this. You gave up the fags and that must have been really tough, and now all this, which emotionally is so hard to deal with.You will get your sensible head back on again, go forward and be stronger for it.

I hope you will enjoy pulmonary rehab and meet lots of people in a similar position, with the added bonus of getting slowly fitter. I did.

I know it will be a tough Christmas for you and hope you are able to be with your family. I’ll be thinking of you. Take care and be strong. x Jax

[Itsmeagain1 in reply to HighGables]

That's so sweet yes with all that went on and I know lots of people have had a bad year but also believe this is a Giant kick in the teeth but onward and upward I've been to pulmonary rehab before couldn't do it last time as I have white coat syndrome so BP went up they wouldn't let me do it my readings at home were good seems my body is also fighting me see what happens I'm going on a duretic to help keep my ankles down hopefully my BP doesn't spike when I get to rehab if it wasn't so damm serious I'd laugh damm body

[Cheriebobo]

Hi.. Its me again.. Dont know about you.. But i seemto be ina rage most of the past 2 wks... Its the constant fightto breath.. Or get help... The other day i completely lost it... Outof control. Swore like mad.!!! Idont even know where the temper came from. Bur i F.. K AND F.. D and afterward didnt even feel embarrassed. Just bloody ANGRY took 2 days to calm down. I then laughed to myself.. I then understood how Tom Cruise felt... The straw that broke the camels back... So I think every one is feeling like this. Only its worse for us because we feel so ill and unable to get the help we need.. Itsthe same. For cancer patients.. Were a struggling.. Hard to keep going.. So maybe lime me have. A goid BLOODY. RANT... My goodness i dont even k ow where i got the language from. . And it was. All because of a bloody covid. Idiot.. No mask.. A 6FT MALE PUSHING ME... A 5 FT WEE WOMAN.. Out of the way... Still angry.. But proud of myself for not accepting 💩... See imranti g again. Peace and goodwill to all men.. Well.!!! Mist of them. Merry Xmas. Margarita and the woofs 🎅😂

.

[Itsmeagain1 in reply to Cheriebobo]

Oh my god I know what you mean and a good old swear was properly what u needed they don't listen to our concerns like I said before if I had a magic wand I would give every single doctor nurse consultant and yes the 2paramedics when I called them recently who said what did you ringing 111 tonight think they were going to do for you they would be top of my list how I didn't tell him in swear words what a stupid idiotic comment that was I don't know what the hell did he think I phoned them for Jesus I give up on the do called caring profession even when I go to hospital 30mls away a good 1hr in a bumpy cold ambulance no coat and put on a bed for a HR then told I can go home it was 3.30 am how did they think I was getting home I'm not working a taxi would of been over a £100 I'm entitled if I can't walk far to non emergency transport nope find your own home appantly the ward I was told I was going to someone else needed my bed so off you pop wonderful treatment I'm surprised I haven't used any swear words myself if u need to let rip go for it

[Alberta56 in reply to Cheriebobo]

It does you good to let it out from time to time. And you chose the right target.

[Itsmeagain1 in reply to Alberta56]

True it does hopefully someone will listen that needs to and help. I refuse to believe I've done this for nothing kind words and empathy goes a long way and all of you on this site have shown me more of that then any doctors nurses or even paramedics they don't seem to understand we are scared and they should be making u feel that they care

[maggiewhiteley]

Your not alone, I went through all the tests too, and was so hopeful that the Brompton were the answer to my prayers, then told there was nothing they could do, I was utterly shattered. Now they keep offering clinical trials, then telling me Im not suitable. Anyway You will get over it in time. Take care and merry Christmas Maggie

[Itsmeagain1 in reply to maggiewhiteley]

Oh I'm so sorry I do hope the next one u are offered will be suitable to have a long and healthy life merryXmas to you 😊

[Dedalus]

I can totally empathise, but don't give up! I went through this with the Brompton only to be told after several months, two visits and numerous tests that they couldn't help me with anything. When I questioned my FEV1 results the consultant was very condescending, cold and unhelpful (which I found at each appointment with him - don't think he has the ability to smile, and definitely no bedside manner). I have since been referred to Addenbrookes, Cambridge - they may/may not be able to help me (LVRS -surgery has been suggested as a possibility) but everyone is SO much nicer than at the Brompton (and just as professional). Ask your consultant/GP if you can be referred there - good luck.

[Itsmeagain1 in reply to Dedalus]

Thankyou I will and all the very best I hope you get that lvrs and you feel great after it I'll keep my fingers crossed for you merry xmas

[Dedalus in reply to Itsmeagain1]

Thank you. Wish you all the best too. Merry Christmas and Happy and Healthy New Year.

[gillianTS]

Last year I received the response from a hematologist telling me and my GP their was absolutely nothing wrong with a particular part of my blood that continued to provide high blood results on every test, but I knew she was just giving me the broad brush off and my GP was a little like yours waiting for some guidance that I knew he would never receive, so on the back of this phone call from my GP I quickly responded to him in writing pointing out research I had carried out prior to the long wait from the hematologist from consultants in other countries who I had contacted and that based on this the hematologist had not provided me with a good enough response as to the reasons why my blood was like this etc... the GP didn't know what to do at all with my letter and findings and unbeknownst to me at the time he had sent my letter to the same hematologist asking for her response who then unbelievably came back with a plether of research and amazingly a possible reasoning regards one of my medications... however this was completed disputed later by the prescribing neurologist, but that's another story. Anyway the moral of my story is don't sit back and take this, write to your GP telling him/her exactly what you have been advised from your phone call today with the Brompton regards the tests that were not completed and that he/she has advised you that your GP needs to refer you for the tests and that you then will of had a full and proper assessment completed on your health.

I was very touched by your message and if my arms were long enough I would give you a big hug 🤗 Stay strong, keep on fighting and never give up, the only person who will ever fight your corner is you, and you are the only person who knows exactly how you feel. Keep safe 😊 x

[Itsmeagain1 in reply to gillianTS]

What a lovely response thankyou I actually tried ringing my gp just now I was no 1 in the queque then told all busy ring back later so I will continue he should of put 2 meds on and on looking at my patient access not been issued I only spoke to him at 6.30pm last night and was told it was being done hmmmmmm so yet more phone calls to be made today it just drives me up the wall after my crying spell yesterday and obvousily tears were flowing due to my hubby's death I n SEP I'm getting pretty sick and tired of being ignored I'm going to forget I'm s lady soon but then doctors won't accept any abuse of their staff what about patients then disgusting treatment well here goes another phone call wish me luck have a wonderful Xmas I will try to but this year I want to go away

[Snackjack]

I fully understand how you feel, I have a breathing problem. I had a lobectomy in March 2017 and my breathing continued to get worse lot's of tests and the conclusion was my heart causing the problem not my lungs so I saw a cardiologist who did a few tests and then just signed me off with a letter to my doctor where I found that I have Ischaemic heart disease with left ventricular impairment (I had a heart attack in 1986) - nothing to be done!! I saw a heart failure nurse specialist who adjusted my medication and that was it did nothing else, learn to live with it attitude. I gave up smoking December 2016 when I was diagnosed with lung cancer and emphysema. Never had a breathing problem when I was smoking. I suppose the only thing is that if I had carried on smoking I could be worse than what I am now. I was supposed to have another echocardiogram in July this year but that has either been completely missed or I suppose with the Covid situation I may be in a queue. I was supposed to have an endoscopy in November this year as I have Barretts Oesophagus (pre cancerous cells in the oesophagus) I have contacted them and I am in a queue so may be some time next year but couldn't give me any idea when next year, they are still on catch up! I do wonder if I will still be here when they get round to me! So fully understand why you feel fed up. You always have us if you wish to have a rant or a vent, much better than keeping it all inside yourself. Try to have the best Christmas and New Year than you can and remember we are all thinking of you and wishing you well,🌲🌺🥀🌹

[Itsmeagain1 in reply to Snackjack]

Oh bless you I hope you get to the top of that queque first thing in Jan I phoned the royal Brompton she said ask for another referral late transport always happening so I have message for my doctor to do that hope he listerns also consultant Said my heart has changed due to lungs but no more information were send letter to your Ur doctor last one took weeks to get to them my copy didn't turn up so I'm ever hopeful someone will explain as do I need meds for it if I do why am I waiting have a good Xmas and I hope the new year brings good news to all of us living with not only this awful disease but the lack of compassion and empathy that's shown by those that are supposed to be there for us

[Susan1200]

My sincere condolences to you, i feel so sorry for you, but I know you can do it.it's so wrong what they have done to you .You sound a strong person and a strong person never gives up no matter how much bad feedback you had.

NEVER EVER GIVE UP ,YOU CAN DO IT.🚶‍♀️🏃‍♀️🏃‍♀️

[Itsmeagain1 in reply to Susan1200]

Thankyou I will carry on bless you you have a lovely Xmas I will see what I he new year brings 😊

[Susan1200]

I shall be adgeing you on ,I know you can do it 🗣🏃‍♀️🗣

[Itsmeagain1 in reply to Susan1200]

Oh bless u. 😊 all I need is some good news