Urgent meeting: Had my meeting with... - British Lung Foun...

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Urgent meeting

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Had my meeting with neurology pulmonologist and cardiologist , wow head spinning . No cure for seizures have lesions on heart and brain due to hypoxic attacks two years ago which are now causing seizures . Both lungs collapsed at bottom lobe so all's good in the woods 🀣🀣

88 Replies

Hope you can get some help for the seizures even if there’s no cure. Stay safe xx

in reply to sassy59

Apparently will constantly have them but fortunately they only last seconds but as it was pointed out I must not go out unaccompanied easy I don't go out anyway πŸ˜‚ , apparently what's happened is very rare but caused by in treated hypoxic attacks two years ago . It's left like scars on the heart and brain nothing too serious but got to be monitored every month

sassy59 profile image
sassy59 in reply to

Take care Davey. Xxx

in reply to sassy59

Just trying to process everything at moment . Meeting started at 9am I've just got home after a thirty minutes trip back . Everything was explained well so I could understand everything . The neurologist was actually English which was a huge help . I have to visit the clinic in our village which is handy they will check my O2 levels on a weekly basis I'll also have a my BP and sugar levels checked basically monitored every week on everything . But as I was told my condition as deteriorated but I'm not giving in and still going to be looking at the stars each night πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

sassy59 profile image
sassy59 in reply to

Good for you. It sounds as if you’re being well cared for. Thinking of you. XxπŸ‘πŸ˜ŽπŸ€—

in reply to sassy59

Thank you so much for your support . Please take care and keep safe , πŸ‘πŸ˜·πŸ˜˜

sassy59 profile image
sassy59 in reply to

Very welcome. You stay safe too. XxπŸ‘πŸ˜˜πŸ€—

Oshgosh profile image
Oshgosh in reply to

You need to allow yourself time to process everything they’ve told you .

in reply to Oshgosh

Oh I know but some parts are a little hard to swallow 😜 even though everything was explained well I felt like I was already being disected if that makes sense . πŸ˜₯

Thepainterswife profile image
Thepainterswife in reply to

Positive Mental Attitude πŸ‘ I firmly believe it’s as good as if not better than many medications . I’m convinced my husband would have succumbed to emphysema years ago were it not for PMA , he is always looking forward , always hopeful that things will get better and always grateful for and making use of the good days to enjoy his life as best he can . I remember a respiratory consultant looking at him with a very grim and sympathetic face and saying β€œ do you realise how seriously ill you are Mr Smith ?”My heart sank that day but six years on he’s still battling on at 73 ! You keep on watching those stars Davey1963 ! Sending you love and positive healing thoughts 😊

Yep, thats the key isn't it, no matter what life throws at us, we must enjoy and be grateful for every day! Your husband has a great attitude.

Definitely, we can’t choose what life throws at us but we can choose how we react to it 😊

in reply to Thepainterswife

That's a fact πŸ‘

Maricopa profile image
Maricopa in reply to

May I ask for additional information regarding your hypoxia? What happened and how low did your oxygen saturation get. I’ve been having sudden drops at the slightest exertion.

in reply to Maricopa

Everytime I had long coughing bouts my O2 levels dropped I can't say how low because it wasn't monitored but I had the coughing bouts when I was walking distance , I wasn't on any meds because I didn't have access to them all I had was aroline inhaler and I got through one a day you get them over the counter here , salbutamol inhaler is aroline here . But when I had an attack I went very dizzy blurred vision and then blacked out I could be out for twenty minutes or so but when I came round I was confused and disoriented big time felt nauseous and I noticed my neck and lips were usually purple . All in all not a nice experience

Maricopa profile image
Maricopa in reply to

Definitely not! For you to turn purple you got very low on oxygen.

in reply to Maricopa

Don't suffer from the blackouts anymore but been left with these damn seizures πŸ˜‚πŸ˜‚ only last a few seconds but not good when your having a conversation and you have one because you can't carry on you don't know you have had one but yet again you don't know what you we're talking about either 🀣

in reply to Maricopa

When you wake up ghasping for air its a horrible feeling and trying to explain to a doctor when there's a language barrier is also a problem . But after one of these attacks happened in the village someone got an ambulance out and I got taken to hospital , on oxygen in ambulance and in the accident and emergency they asked me a lot of questions which I answered as best as I could I shown them my prescription paper from UK because they didn't understand c.o.p.d here it's called something else no c in Greek alphabet πŸ˜‚ . that's when they got me an appointment with my kind pulmonologist who eventually got me sorted out to the point I'm at now . Problem is that a lot of damage was caused my bottom lobs on both lungs have collapsed I'm stage four I have lesions on both brain and heart and if that wasn't enough I have four annular tears and three herniated discs which are compressed in my spine πŸ˜‚πŸ˜‚πŸ˜‚ πŸ‘ totally defective πŸ˜‚

Maricopa profile image
Maricopa in reply to

Sounds dreadful. Do you have alpha one?

in reply to Maricopa

Alpha one ?? This is how bad my breathing is I haven't slept lay down since June 2017 I have to lay on my bed sat up against the wall πŸ˜‚

Maricopa profile image
Maricopa in reply to

Inherited alpha one antitrypsin deficiency. A genetic condition that destroys ones lungs and damages the liver. I have it. I’m a ZZ genotype.

in reply to Maricopa

No I never heard the specialists mention anything like that in fact my liver is about the only organ that is worth donating , I have a small cyst on my kidneys not worth worrying about apparently . The good thing is that I'm on meds and they've actually Told me instead of four times a day I'm to go on my machine five times and if it's still bad six times so tonight I've just going in to have round five then have half hour to let the meds settle in and then go listen to my MP3 player on my bed . πŸ‘πŸ₯΅

No wonder your head's spinning Davey but I have to say it sounds as though they're really looking after you over there on Rhodes. 5 star compared to some areas in uk where we can't even get a face to face gp appointment so sick people are falling through the net. Take care of yourself, I'm sure everyone here is rooting for you. P

in reply to peege

Thanks for your support its appreciated and yes I can't fault the way I've been dealt with by the specialists and everything was direct and to the point no punches pulled .πŸ‘πŸ‘πŸ‘

A lot to take in Dave and not good news that you have such extensive damage. That said it's good to know that you are now going to be closely monitored weekly at the clinic in your village. That must be more reassuring. Think of us in the rainy UK when you are star gazing. Best wishes, Carole xx

in reply to CDPO16

Thanks carole I'll be thinking of all of you and hoping each and everyone will keep safe and taking care .πŸ‘β€οΈβ€οΈβ€οΈ

Take time to chill with the stars and absorb all the information given,By the way of your great personality you will strive in life.

in reply to Maggie_Mae

Tonight I will sit under the stars and feel grateful for being able to do exactly that . I want to thank everyone for your suy it's going to be a tough road but Im not backing down from this challenge and will go kicking and screaming if I have to πŸ‘β€οΈ

Not gooď Davey but you are being well looked after..probably better than here.. at present . I haven't seen a consultant for 2 yrs now. I asked to see a specialist for bronch and waiting for that , had a telephone consultation but have to go back to routine respiratory clinic first whenever.! Make sure you go to the clinic

in reply to Jaybird19

Oh I'll be going without a doubt , must admit it may have taken a couple of years to get things moving here but it's on a roll now . I can understand your frustration it's ridiculous situation your in especially when world wide the NHS was looked on as the British landmark , people came to the UK just for treatment and now people are waiting to be accessed for cancer let alone all the delays in surgery and the backlog with doctors in general . The NHS was something that Britain could be proud of but then poxy politicians screwed that up . I hate politicians in general they all have their own agenda and the money they get to shout at each other or sit doing nothing apart from reading the sun or going sleep . My heart goes out to you and everyone who is waiting for treatment .

Marionmarion profile image
Marionmarion in reply to

I couldn't agree with you more. I have trouble breathing, after life-long trouble with my respiratory system, had to wait over a year to see a specialist for 5 minutes to be dismissed again straight away. That was even pre-pandemic. Now I am deteriorating, but don't see a point to get infected just to be put on those years long waitlists again!

in reply to Marionmarion

It's ridiculous situation your in and my heart goes out to you ❀️ keep pushing them and push the fact they are responsible for any further damage caused by their neglect .πŸ‘β€οΈ

Marionmarion profile image
Marionmarion in reply to

I don't feel like pushing right now because I cannot get vaccinated due to an inflammatory response to my lungs after my last flu jab in 2009 which left me with ever deteriorating breathing troubles. So I am trapped. We will never know when or if herd immunity comes. I am suffering and panicking! I am not scared of being dead, but catching Covid and surviving it, ending up with even worse lungs is the worst possible outcome for me, so I have to keep shielding for ever I guess. Well, who says life's easy.. 😏 😘 πŸ€—

in reply to Marionmarion

Well I can understand your reasoning , I keep my self out of the equation by only going to appointments , I won't even go for a swim unless there's no people about I'm hoping to go Saturday but not holding my breath πŸ‘πŸ˜‰πŸ₯°πŸ˜˜

Marionmarion profile image
Marionmarion in reply to

You are damn lucky to have the beach there! I love swimming, but shall never do it again now.. πŸ˜₯

If we could choose for ourselves when we've had enough (euthanasia/assisted suicide) then I would risk much more/would live to the fullest possible extent (even if that means just going for health care) instead of dying of fear and loneliness.. πŸ˜₯ That is a topic which shouldn't be hidden, but spoken more about in my opinion! But it will come too late for me. When you are there, then you don't have the strength anymore to fight with politicians! And healthy people don't talk about such things, understandingly.. No chance..

in reply to Marionmarion

In all honesty I think the only people who have the right to say yes or no to euthanasia is the person suffering who gives politicians and courts the right to play god . If I knew tomorrow I would possibly go in two days time I would have the time of my life tonight go to the beach in the morning walk out into the sea and keep walking ., But that's my personal feelings I can't speak to others .πŸ˜₯πŸ‘πŸ˜₯

Marionmarion profile image
Marionmarion in reply to

My problem is that we have NO right to assisted suicide. Because I must not get infected I can never see my boyfriend again, will never swim again, will never dare to go for health care again ect.. If I would know for sure though that I can pick up my lethal injection at ANY time and would not be denied it, THEN I would dare to take more risks such as seeking health care again, seeing my boyfriend again, going swimming again ect.. But because I MUST prevent a Covid-infection, I will end up dying of fear and loneliness now shielding for ever alone at home. So I should fight for a change in law, for the right of assisted suicide. In order to LIVE (now). But I have the feeling I will be getting nowhere, because healthy people make the law and they haven't got a clue what I am talking about.. πŸ˜₯

in reply to Marionmarion

I know the feeling babe , I'm 57 single and no possibility of finding one anyway what can I offer anyone , I asked the specialist today if I will know when the time as come the answer was simple I will know it's happening because I'll be in so much pain as everything is shutting down and then that will be it . So I've got to go through excruciating pain and feel everything shutting down because some healthy Pollock in a white coat said it's wrong to take your life . Sad . πŸ˜₯πŸ˜₯πŸ˜₯

Marionmarion profile image
Marionmarion in reply to

Yeah! If I would only know HOW to take my life in a humane and secure way, then I wouldn't worry TOO much and could start to live again a little.. But they don't help us at all, that is the problem. I am suffocating slowly already, it is agony!

For pain there are at least strong painkillers, so they won't leave us to suffer! Don't be afraid! There are people living with morphin for many years. And let's hope before that we have many years to come yet! πŸ’–

P.S. You have to offer a lot btw! There are a lot of people in your situation who want to be found and loved! You could always try online-dating, you can create a bubble with another shielding person or just chat online! Think about it! You are not the only person who needs love on this planet! .. Or on Rhodes.. πŸ˜‰ πŸ’ž

fantwalk profile image
fantwalk in reply to

Oh no Dave, you don't have to be in pain at end of life in this day and age, they have many medications to keep you comfortable, make sure they do! Your Dr should not have said that too you.

in reply to fantwalk

The doctors are Greek , no hospice your at home when you die and nothing was said about palative care

Your situation sounds truly terrible Marionmarion - I’m so sorry. Shielding forever is extremely tough.We can only hope that the virus itself disappears at some point.

Hi, Dolly! We might reach herd immunity in 5 years time, but we wouldn't know, because we cannot force every citizen to an antibody test. The antibodies supposedly fade after 9 months and "immune" people might still keep transmitting.. It is so scary.. πŸ˜₯

Sending you lots of love Marionmarion. There is a lot of activity on this topic at present in both places of government in the U.K. so some answers may be on the way. That’s not to diminish the pain that this is causing you now but just that the issue of assisted dying is out in the open once again. Take care. Grace

Grace, you are giving me hope! I might even use my last energy to write to my MP after all! And I am inviting you to keep me updated (private messages?) about every news and detail you have about that! On the contrary, I am not even diagnosed! Because of that I would fall through the net anyway! I would have to be ABSOLUTELY SURE in advance already that I won't be denied my lethal jab, otherwise I will not dare to live again! It should just be enough that YOUR WISH and YOUR WORDS count and no "paper diagnosis" or non-diagnosis! But that is never gonna happen! But you are welcome to send me your knowledge/links/regular updates etc. any time and every time! I shall never get tired of that! Thank you and much love, Marion πŸ€— πŸ’‹

I agree it's a topic that needs more discussion for the right reasons by people who understand not the fools we call government (sorry to offend) . I really feel for you literally existing and not able to enjoy life atm I truly hope something changes for you, and soon. XπŸ™‚

I agree with every word you are saying! Perhaps we should start it here and now in BLF? A petition or so? I am personally quite new yet to the internet and to technology.πŸ™ˆ On top of that, which poorly person has the energy left to change/create a law?? Well, we have to start somewhere and maybe that is a beginning already. We might not live to see any useful results though.. 😏

But we may, to see important discussions to be had and understand people's viewpoints on the topic both for and against from the very people who live with life limiting conditions and terminal prognosis individuals and their carers. XπŸ™‚

Yeah, let's hope so.. πŸ˜ƒ

Gentle hugs. I wish (futilely) there was more I could do. xxx

Thank you, Alberta! The dark number of people "living" like me could be high. As I don't dare to venture out (I might not even be able to due to weakness and lack of breath) I am not even in the statistics of the people on waitlists! There you go! Hugs to you too! πŸ€—πŸ’–

Stay strong Davey.πŸ˜₯πŸ˜ŠπŸ€—

in reply to Bluenotes

I'm enjoying the stars and some well deserved cooler air πŸ˜πŸ˜‚

What a lot to deal with. It's good to know you're getting some proper care and support though. Sending you lots of good wishes ✨

in reply to HungryHufflepuff

Thanks πŸ‘ I don't actually get any real support except on here , it's took till today at this meeting to actually get all the answers instead of bits and bobs in broken English , it was the first time I saw the neurologist today and thankfully he was a British Greek so was able to tell me everything , things that I should have been told months ago but didn't because of the barrier , but now I can go clinic once a week and they will set up my MRI each month . Just hope the person at the clinic speaks English ,,πŸ˜‚πŸ˜‚πŸ‘

Patk1 profile image
Patk1 in reply to

You've got an awful lot to deal with Davey.i really feel 4u.its a lot for u to take in.Take it easy,when not attending to step dad.is there anyone who can help a bit with him so u can rest more?

Your positive attitude is amazing.hang on in there xxx

in reply to Patk1

No other help unfortunately , it would be so easy to Roll over scream shout cry and get angry . But it's not going to change a thingy health won't improve . I just deal with every challenge and each day as a.new one especially with my stepfather . ,πŸ‘πŸ‘πŸ˜….stay safe and take care

Davey you are a super star for dealing with your condition so calmly. Wishing you the best of health and no more deterioration. Can I ask was it Copd that caused the hypoxic attacks? I struggle with low gas exchange dropped 25% in the last 18 months as a result of the lower bases of both lungs damaged with scar tissue. Im fortunate I’m on oxygen. On occasions if I haven’t filled it up and left it 30 mins to settle (liquid oxygen) I might exert myself and not wear the oxygen - for example realising I’ve forgotten to put the bins out just before going to bed. Your post is probably a warning to me that it’s not good to be low on oxygen regardless of how short a time. Take care

in reply to BreatheasyBe

It was actually having no meds.for nearly three years that caused it

Hi Davey1963,what a lot to put up with,I wish you well and hope you get some anti seizure medication to help.

in reply to B0xermad

No meds.available for the type of seizures I'm having unfortunately

B0xermad profile image
B0xermad in reply to

Sorry to hear that davey

Hi DaveyA lot of information and a lot to cope with. You are clearly a survivor thus far! I’m impressed tho that a Greek island has comprehensive and clear healthcare which is free to us non Europeans!

Keep enjoying the stars and the beach 🌟🌟🌟

in reply to Hellodolly

Will do πŸ‘

Thinking of you, glad you've got supportive people around you and that the stars do their duty every night. ( I saw one whole star the other night Arcturus? Aldeboran? If I were not a lazy *** I'd dig out my planisphere. It's dull and hazy here in Essex.) Anyway, back to you: I do admire your fighting spirit. Hope for the very best for you.🀞🀞🀞 xxx

in reply to Alberta56

Thanks for the support its appreciated πŸ‘πŸ‘

Hi Davey,That is such a lot that you are coping with and you are working on it with so much positivity. You are so right to be emphasising how much gratitude can be helpful to us. I admire your attitude and just wish you strength for those days when it can be difficult to find.

Do you monitor your own oxygen saturation levels ?

Thanks your post and take best care of yourself as you bask in the starlight.


in reply to Walkwalkwalk

No I don't monitor them myself I now get them checked at clinic every week

Wow - but at least you had it fully explained to you and they seem to be keeping you under close observation. Good luck and stay positive

in reply to Digger0

I'll do my best πŸ‘ struggling to get internet access on my phone at moment turkey is on fire straight across from us so causing disruption big time so may not be able to communicate for a day or two πŸ‘πŸ‘

Good luck Davey. I like our talk the other day. It was I treating. Take good care of yourself. I know you will but don't give up the good fight.πŸ™πŸ’ͺπŸ‘

in reply to Imnotright

I'm doing everything I can to keep going I'm determined to not let it beat me just yet πŸ˜œπŸ‘πŸ‘

Imnotright profile image
Imnotright in reply to

That's good. I'll pray for you.

in reply to Imnotright

Thank you I need all the help I can get πŸ‘

Imnotright profile image
Imnotright in reply to

You're welcome

Thinking of you and sending positive vibes over the sea to you.I think sometimes when you have up to date medical advice it's helpful rather than floundering around in the dark.

With knowledge of your health you are in a position to make the choices that are right for you.

Stay safe and take care

in reply to ninelives

Will do and thank you

Hi Davey. Good to know you now have more understanding of your condition and that you are being monitored weekly. Hoping things improve and you will continue to enjoy your swimming and star gazing, great past times? Wishing you al the best xxx😎

in reply to HollyBoyd

Thank you for your wishes and I'm grateful for the support even though I'm being monitored I'm still pretty much alone apart from everyone here , at the moment I'm relaxing outside for half an hour to let my Meds kick in and I'm being snowed on with ash . Yes ash from the fires raging in Turkey as it's only 18 miles across the water from us , I can see the red sky from the flames . Not good

Sorry to hear of your problems Davey , it must have been a shock hearing all this, the good thing is you are being monitored and by the sounds of it looked after quite well. Do you pay into a private health care system over there , or is the UK system supporting you ? not sure how all that works now we have left the EU, but glad you are supported. Enjoy your star gazing and keep hydrated in that heat x

in reply to Izb1

No I get no medical support from the UK what so ever and I'm not covered by the Greek insurance yet , not been able to get it sorted because of isolating myself from everyone , cases Are rising quickly here because of tourists not following simple rules it's so sad that people are so ignorant to life . Keeping well hydrated πŸ˜‚πŸ˜‚ plenty of water and not on tap all bottled .

Izb1 profile image
Izb1 in reply to

Oh my word, so you are having to pay for each visit, how awful for you. Take good care x

in reply to Izb1

I get Β£230 a fortnight in ESA and that goes straight out on my Meds every two weeks I'm paying for everything medical πŸ˜‚πŸ˜‚πŸ˜‚ my mp from back in the UK as contacted DWP about getting me help they said my claim for pip is being processed . My mp is a doctor so understands the seriousness of my condition . This business of having to wait until you only have six months to live to get your pension is all wrong , when you are terminal you want your quality of life to be better while you can appreciate it not when your ready to pass it on or in my case let the government have it back πŸ˜‚πŸ˜‚πŸ˜‚

Izb1 profile image
Izb1 in reply to

So unfair but good that your mp is on your side. I hope everything gets sorted and soon. Keep your chin up Davey x

in reply to Izb1

I have my down days but put a brave smile on my face but I can expect it so I just keep going I'm not giving in to it .πŸ‘πŸ‘πŸ‘

Enjoy the stars tonight while trying to process everything glad your being monitored regularly though. XπŸ™‚

I’m Sorry To Hear This Hidden I Hope U Can Get Some Sort Of Support Or Help With The Seizures I Hope You Are On Medication For The Seizures . Take care And Keep Safe πŸ–€πŸ–€

in reply to CaptainPugwash

No support apart from on here no medication for the seizures unfortunately but hey ho . I'll just add it to my list of defects πŸ˜‚πŸ˜‚

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