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Mavary profile image

I was just wondering if anyone else is finding problems breathing. I’ve used my ventolin and it was better for a minute or two but now it’s difficult to breathe again. My peak flow I’snt too bad. It’s about 400.

68 Replies

Pete has struggled a bit today and used his inhaler more. It’s meant to be hot again tomorrow. Hopefully it will cool down a bit on Tuesday onwards. Take care xxx

Mavary profile image
Mavary in reply to sassy59

Thanks Sassy. It feels like I had when I had an Aspergillosis attack. Xx

This weather often affects damaged lungs: healthunlocked.com/blf/post...

The pollen count is very high Mavis, could be that along with the heat. If it doesn't clear up very soon best contact the gp in case its an exacerbation of your aspergillosis. P xx

Mavary profile image
Mavary in reply to peege

It’s better than it was with the antihistamines but it’s not right. I think I’m overbreathing and have got a funny head. I’m wondering if it’s an Aspergillosis exacerbation.

Mavary profile image
Mavary in reply to peege

Hi peege. My breathing is easier but not right despite the antihistamines. They have helped but not completely. I’m worried about going to bed tonight as it was first thing in the morning I passed out last time when they found my eosinophils were high. I want to try and wait for the morning as I dont want to be taken in hospital again. The trouble is my oxygen seems ok and my peak flow seems ok. So am I imagining it?

peege profile image
peege in reply to Mavary

Better to be safe than sorry dear Mavis, we don't want that horrible aspergillus growing again. Who do you usually see for it & do they have to do a CT scan to check or bloods?

Mavary profile image
Mavary in reply to peege

I was due to go to the hospital two years ago this December but they have been so busy I left them to it. I’m normally not too bad but I’ve had a rotten day today. They may get round to me this year. I can’t think of any other reason why I’m short of breath other than Aspergillosis. All my stats seem ok.

peege profile image
peege in reply to Mavary

As I say, best to speak to someone just to make sure, it's a horrible thing and if it takes hold its so hard to shift it. Can you call the consultant's secretary perhaps or at the very least the gp. Hopefully he'll do a sputum test to see if it's lurking P xx

Mavary profile image
Mavary in reply to peege

This is the first time I’ve had breathing problems since I had pneumonia first then Aspergillosis a couple of years ago. I will call someone if I have to. I’m hoping going to bed and having a good nights sleep might make it better.

Mavary profile image
Mavary in reply to peege

Hi Peege. They are now thinking on the lines of either a blood clot or Aspergillosis. I’m having a scan so will know more after. Hope you are both ok. X

peege profile image
peege in reply to Mavary

Thanks so much for letting me know, I'm so glad that you sought help and will be having a CT scan. Been thinking about you xx

Mavary profile image
Mavary in reply to peege

Had CT scan and an X Ray but haven’t seen the Consultant yet. Looks like I’m staying another day.

peege profile image
peege in reply to Mavary

Crumbs are you actually in hospital M? ××

Mavary profile image
Mavary in reply to peege

Hi Peege.I came home last night. Apparently I’ve got another four fractures in my back due to osteoporosis. I’ve had an awful backache at the top of my spine but I put it down to my other three fractures in my back. They gave me an XRay and a scan. Apparently I have a 5mm Pulmonary nodule which explains why they keep checking me for Pulmonary fibrosis. Also there is unchanged bilateral subpleural interstitial disease. You will probably understand it better than me. My breathing is still not good but I think it’s due to pressure on my lungs due to the seven fractures. I think I’m falling apart . X

peege profile image
peege in reply to Mavary

Oh dear whilst being pleased that youre home I'm so sorry to hear about the new fractures and the lung changes. Not what you need at all. Does this mean you have interstitial lung disease? It may help to put that in the search bar above to understand what the diagnosis means. How long do the fractures take to heal?I've had osteopenia for 20 years since my 40s and quite regularly break or chip bones - I'm quite clumsy and I do things I shouldn't because in my brain I think I'm still 30 and indestructible.

Take care my dear Mavis xx

Mavary profile image
Mavary in reply to peege

Ha h! Me too. How can you stop doing things you’ve always done. I’m the same. The interstitial part and the Pulmonary node is unchanged since I had pneumonia three years ago. I presume I have interstitial lung disease but it is dormant. I think it’s due to having three lots of pneumonia and TB in my lifetime. I’ve phoned my bone consultants secretary and hopefully they can do something more for me. I thought something might be wrong when I had difficulty carrying my handbag when I went shopping. I suppose this is going to stop me driving for six weeks. Argh!!! That is so annoying. X

I am doing ok ATM. Got my antihistamines because high pollen, but so far nothing. Hopefully you doing better again soon. Best wishes 🌺🌺 🌺

Mavary profile image
Mavary in reply to MELNEL

Thanks Melnel.x

I'm having problems live near city centre and it's very humid. No breeze using ventolin no stop like yourself doors and windows open and fans on including one in the bedroom so room will be cool where go to bed. They say might be thunderstorms by Wednesday. Take care.

Mavary profile image
Mavary in reply to Spacecat1

As much as I hate thunder and lightening if it’s going to help with my breathing.

Fingers crossed like the lightning but not thunder

Mavary profile image
Mavary in reply to Spacecat1

It’s the lightening that can strike you. I don’t like either. I was walking across a car park when there was a flash and what sounded around my head thunder that seemed to go on and on. I had my umbrella up and I quicly put it down. I ducked my head that’s how low it felt. It was the worst thunder I have ever hear. It struck a field about half a mile away. When I was a little girl I used to hide under the table when it came. I had gotten over that until the car park I won’t go out the door if I think thunder and lightening is near.

I think we’re all suffering at preset with our breathing. I’ve taken it very east this week.

If you are still breathless and no better now the temperature is slightly cooler and Ventolin still not helping much , would ringing 111 for advice be helpful?

Mavary profile image
Mavary in reply to knitter

I’m better than I was but not perfect. I’m trying to wait and see the Dr tomorrow. If it gets any worse again I will definitely phone 111.

I’ve had to take my reliever inhaler a few times over the last 24 hours. It’s very hot and stuffy. My peak flow went down a bit too. Hope you’re feeling better and slept well. I’ve been awake since 4am x

Mavary profile image
Mavary in reply to watergazer

I slept well as I take a half of temazepam before I go to bed. My breathing is still not good. Ive got a phone appointment this afternoon with the Dr. So hopefully I will get somewhere.

watergazer profile image
watergazer in reply to Mavary

🤞x

Mavary profile image
Mavary in reply to watergazer

👍 x

Im living in Greece and during the winter which in Rhodes is very short period of time and the temperature drops and we get rain I have problems with ventoline not seeming to work for very long just a few minutes mind you I'm.stage four and at the moment nothing seems to be working 😂👍 I think some people react in different temperatures because when I was back home in the UK I struggled more in the cold weather than the warmer weather but here it's a dry heat and I seem to struggle less well I did until the past year .

Ergendl profile image
Ergendl in reply to Davey1963

Rhodes made my arthritis so much better too.

Davey1963 profile image
Davey1963 in reply to Ergendl

It would do , there's an old lady in our village who is 103 and still works her land , olive oil and good food along with good weather is a big bonus for you if you suffer from arthritis

Mavary profile image
Mavary in reply to Davey1963

I’m on my way😆😆😆 As much as I’d love to be in a hot country I couldn’t. I’ve all my family around where I live. My youngest does so much for me. He went to get some antihistamines for me last night and stayed with me for a couple of hours. It’s good to have that support. I’ve heard that Greece is a heathy place to live and I like the idea of living in a place that is so laid back in life.

Davey1963 profile image
Davey1963 in reply to Mavary

The life was kinda thrust on me I didn't intend to stay here I came to pay respects to my mother who passed away she retired here , let's just say a sick indervidual lied to dwp and got my ESA stopped who actually took three and a half years for my ESA to be reinstated after a full investigation proved they had been lied to and that I was actually telling the truth 😂😂😂 but hey it's grown on me and now obviously my health condition as escalated to the point of being terminal so why go back to the UK apart from the fact I can't due to irregular blackouts caused by hypoxia. Good food good people fantastic climate a sea good for swimming in ninety percent of the time . 👍👍👍👍

Mavary profile image
Mavary in reply to Davey1963

Hi Dave. So sorry for your prognosis. As I say you are in a wonderful place you soak up the sun and enjoy where you are for however long. I’m still envious of where you are. I could certainly do with the sun for my bones.

Davey1963 profile image
Davey1963 in reply to Mavary

I love the fact that ninety percent of the time it's clear blue skies and sunshine and when it rains it is usually at night , the thing I love the most is the Greeks will bend over backwards to help you as much as possible . Obviously having healthy meals is a big bonus 😂

Mavary profile image
Mavary in reply to Davey1963

Now you are making me really jealous. I agree eating healthy meals is really important. I have always tried to eat healthily not that I always like it. But you get lovely fresh vegetables and fruit in Greece whereas in England it may have been on a ship or lorry for hours. Your Turkish delight over there is fantastic. I had a Brother and Sister in law that used to live in Athens. I believe they had a cafe or restaurant in the City somewhere. They brought us over some Turkish delight once. Mmmm!!! I could eat it now. It’s very rare you find the same quality in England so I don’t like most of ours.

Davey1963 profile image
Davey1963 in reply to Mavary

You can't beat the freshness of the veg here everything tastes of what it should taste like especially tomatoes in UK they seem tasteless but not here 👍 I'm constantly being given fruit by different people in the village peaches lemon oranges mandarins and apricot I also get given two giant bottles of olive oil each time the olive's get processed from a friend just down the road from me in exchange I make him and his wife a nice hot chicken curry 👍 fair exchange . Quality food quality people but with all the friends I have I still feel alone . It's ok having all this weather etc but dealing with what I have to face alone is hard and scarey if I'm being completely honest .

Mavary profile image
Mavary in reply to Davey1963

I can understand about you being alone. I too am but I do have Sons around me with the furthest only about ten miles away. I can always call them if I’m in trouble. Do they have any kind of piper lines you can get installed. You would always then be in touch with help I’ve got one in my apartment. That’s why my Husband and I decided to buy a retirement apartment. You’ve made me all envious with all your fruit and veg. I like moussaka. Do you make that too?

Davey1963 profile image
Davey1963 in reply to Mavary

Hi , I live with my stepfather who is 81 and suffering from dementia and three months ago broke his hip so I have to change nappies and basically cover all his care which in my condition is very difficult ☹️ , out here family care for family members and there's no after care which is a down side our nearest family members are in the UK 2000miles away . Yes I make musaka and pastichio along with Greek lentil soup which is beautiful I do however have to pulse all my dad's food like baby food . I do miss the UK health service and the other good thing about the UK is in situations like mine social services are always at hand . The good part is that covid cases are low here . I have two hours to myself every Tuesday so spend it sat on the beach listening to the sea and looking out at the beautiful green blue sea .

The good thing here food wise is it's cheap to eat out aswell , one place we have food from does the best lemon and oregano covered roast chicken cut into quarters with rice and chips which is a two day meal day one chicken and chips the following day chicken and rice all for ten Euros and that feeds two twice .

I have been sat outside on the varanda enjoying the night sky in just my shorts . It's lovely having that sort of freedom ninty percent of the year

Mavary profile image
Mavary in reply to Davey1963

I’m really jealous in one way but I’m so glad we have the NHS after my back fractures that I’ve got. I’m waiting to hear from my Consultant. I don’t quite know what I should be doing or what is going to happen. It’s all up in the air again. I must say I watch all the TV programs of a life in the sun. I think as I’ve got now it looks like I won’t be able to ever go abroad again. Such a shame as I loved it.

Davey1963 profile image
Davey1963 in reply to Mavary

All I can say is never say never , no negative thoughts just positive 👍 that's what keeps me going . Take care of yourself keep your chin up and stay positive if life throws you lemons make lemonade as they say 👍👍👍

Mavary profile image
Mavary in reply to Davey1963

I seemed to be ok when I’ve been abroad but our weather is so diverse it’s not surprising we get problems. You live in a beautiful part of the world and I envy you. Just sorry to hear you are suffering with your breathing.

Davey1963 profile image
Davey1963 in reply to Mavary

I was diagnosed with c.o.p.d back in 2003 so use to it now but it's funny what you get used to 😂 I came here to Rhodes in 2017 the climate is brilliant and even on your lowest of days the weather and the Greek people can pick you up . You just have to take care and keep watch over the breathing if you notice anything new and repetitive speak to your doctor.👍👍

Mavary profile image
Mavary in reply to Davey1963

I’m speaking to the Dr this afternoon. So hopefully they can shed a light on things. My oxygen level is fine and my BP is slightly raised but that’s nothing new for me. I’ve been to Athens when i was on a cruise and I’ve been to Corfu stopping off on a cruise. I couldn’t believe Athens was so big. We went on a tour around the City. We saw the Acropolis from underneath. I expected to see a smallish place with little white houses. Not a big City. I used to love cruising because you see so many Countries. I’m sorry you’ve got breathing problems. I’m cheesed off and I’ve only had it a couple of days.

Davey1963 profile image
Davey1963 in reply to Mavary

Athens is ok but it's just like you said a city if you want to experience the Greek life you have to go to either the islands or out of Athens into the country itself . Not over keen on cruises myself but that's a personal choice because even though I can swim I don't feel comfortable on a ship 😂😂😂 I like my feet on terafirma 😂😂 have a good day it's time for a nap .

Jaybird19 profile image
Jaybird19 in reply to Davey1963

We used to go to different greek islands every yea r for over 20 years, from 1970s to late 1990s. The smaller and less developed the better. The islands are so different not just the different geographical groups, but within these. Greek life was hard then but the people were lovely and so friendly and generous. We were invited into their homes so many times . I didn't know the language so I went to nightschool every winter and practised greek every summer. We managed to make ourselves understood and they appreciated our eforts. One day we were invited for coffee i n the evening and to meet the family but wasn't sure that I quite understood . Took me 10 minutes to work it out.! Must have mangled the language, found the grammar difficult but we were always welcomed. Paxos was our first island and we loved it. Went to Rhodes on day trip , fine for just a day very busy but very interesting. Lucky you. Did you speak the language when you went and do you speak it now?.

Mavary profile image
Mavary in reply to Jaybird19

We only stopped off on day cruises but I love all the heat of anywhere in the Med or Canarie Islands. It would certainly do me good to live there.

I have been getting up very early (4/4:30 am) to get what housework that I do, done before the day gets hot and oppressive, then have a bit of a doze around 3 pm, it is called having a siesta in Spain. So far this is working for me.

Mavary profile image
Mavary in reply to 2greys

You do what you have to. Mine is facing me this morning. I’m going to try and get a bit done. I know there’s always tomorrow. My Sister gets up early in the morning and will do things. I go to bed late and get up late. I won’t do too much and if it makes it worse I will stop. I a lot of you are suffering far more than I am. Have you tried an air conditioner in the hot months? I would think that may help. You can keep your windows shut with that and have fresher cool air.

Davey1963 profile image
Davey1963 in reply to 2greys

We do the same here in Greece it's nice having an excuse for an extra nap without someone calling you lazy 🤣🤣🤣

Mavary profile image
Mavary in reply to Davey1963

😂🤣

Mavary profile image
Mavary in reply to Davey1963

I’m always being called lazybones. I got up at 9.35 this morning and I went to bed early last night. I only had four hours sleep in two nights in hospital. I was in MAU.

Yes I feel more breathless when it's hot. Clare.

I always struggle in this kind of weather. Suffering overnight and first thing, but it seems to be improving a bit now. I am having a taking it easy day. I hope things improve for you, all the best

Mavary profile image
Mavary in reply to stamford1234

Thank you.

Ive been looking forward to some decent weather.. But its far too hot for me. Had to use ventolin yesterday.. Still having lots of problems adjusting to change of Flixotide Accuhaler because of shortage. It.. along with the Flucanazole has really floored me... hypos..nigbt sweats. comlete fatigue.. panic attacks.. tachycardia.. deep depression.. loss of appetite.. and taste extreme reaction to smells.. but im fighting on.. had heart tracing.. regular but very high.. Waiting on Endocrinology emergency appt. Even had face to face with mental health team as jthad got so bad.. Felt bit better yesterday mostly due to good friends. But this has been going on since 1st Pheizer jag....Coincidence ???

Then stupidly tried to sweep up bit of garden.. So dust.. Ivy. Etc. And back on antihistamines.. So talk about a roller coaster... The minute we start to feel even a little bit better we tryto introduce some normality into our lives... Bang were down again. I need kick up the A.....

But as lungies think were all the same.. Silly buggers trying and wanting to act normal... There..!!!! Thats a lot off my chest.. But not the phlegm. 🙄

Bit anxious about my next due CT scan.. So that is likly making me worse..

My poor woofers havnt been walked in 10 days... And I miss it. And oh boy.. Now football to contend wit lol. ⚽😱😱

Margarita and the woofs 🐩🐩🐩

Mavary profile image
Mavary in reply to Cheriebobo

Sorry but I had to smile at your silly buggers. I’m sorry you are going through so much. I’m hoping mine is only temporary. I honestly feel mine is nothing compared to what you are going through. You rant as many times you like. It will do you good to lighten the load. Xx Mavis.

Cheriebobo profile image
Cheriebobo in reply to Mavary

Thanks Mavary.. Sometimes i just go off on one... Thing is im usually a happy chatty can't shut up kind of person.. Been shouting at the phone for an hour... It wo nt stop ringing.. Nhs wants todo a ZOOM call. Keep telling them i dont have blooming zoom..Spent 2hrs last week on phone call update on how to BREATHE. Because ive been waiting 14 mths for physio. Getting beyond a joke listening to some lovely young physio huffing and puffing down phone and expecting me to copy her.. I was exhausted when I finished.. Angry then had a laugh to myself... It sounded like a conversation youwould have with one of those sex calls. 😱. Shes phoning back to see if ive practised... That'll be a fun call..

At least ive made someone laugh. By the way i only get to 330 on peak flow. Have a good day.. We all deserve one..

Margarita and the woofs

Mavary profile image
Mavary in reply to Cheriebobo

You made me smile with your sex calls.😁😆😂

Two years ago decided to treat myself with a couple of air con split system units.Spent 750 for two units (cold and hot) and 850 for fitting , job done in one day , now is fresh or warm according to weather ...I wish I did it before!

Coupled with an air purifier indoor (350 gbp) now is spring all year round!

The money spent was not even enough for a week in Brighton for two!

Just to say. I saw my Dr and she sent me to hospital yesterday evening. I’m waiting for a scan today. I may be able to go home tonight. All my obs are ok and the eosinophils they say are fine. They are checking with a scan to see if there are any blood clots.

Debs_BLFHelpline profile image
Debs_BLFHelplineModerator in reply to Mavary

Glad to hear you are getting checked out. Hope you are home safe and sound soon.Debs

Thanks Debs. I’ve had a job getting a signal.

I’m home but not happy. I’ve got another four fractures in my back. One of them is quite bad. This adds to the three I already had. So now seven in total. They say no significant lymphadenopathy seen, bilateral subpleural interstitial changes are unchanged as is5mm Pulmonary nodule at left lung base. You may all understand this but I’m at a loss.

Bkin profile image
Bkin in reply to Mavary

So sorry to hear this about your fractures, but good new the situation in the lungs is unchanged. Hope you are soon feeling better. BK

Mavary profile image
Mavary in reply to Bkin

Thank you Bkin. I just hope they can do something about the back fractures because my breathing is not good at all.

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