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So worried

Vonnie50 profile image
76 Replies

Hi diagnosed in Feb this year as mild Emphysema but although I get slight symptoms out of breath on climbing stairs ect. I am scared stiff this week I have been out of breathe walking on flat surfaces, can’t sleep laying flat harder to breathe and today lightly mopping was out of breathe is this normal? Could I progress this quick? Never felt like this before

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Vonnie50
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76 Replies
stone-UK profile image
stone-UK

Hi

Make appointment with GP, could be start of flair up.

Have you come into contact with any noxious substances, aerosol, cleaning product.

A issue with emphysema is triggers, which impact on your breathing.

Vonnie50 profile image
Vonnie50 in reply to stone-UK

I am a cleaner and only use safe products, I have been doing a lot as daughter been ill plus not sleeping ?

Vonnie50 profile image
Vonnie50 in reply to Vonnie50

Plus takes 4 weeks here for appointment

sassy59 profile image
sassy59 in reply to Vonnie50

Try and get an emergency appointment if you can. Xxx

sassy59 profile image
sassy59

Do see your GP Vonnie as I agree with stone, it could be the start of a flair up. Feel better soon. Xxxx

Vonnie50 profile image
Vonnie50 in reply to sassy59

Thank you so scary as on my own

sassy59 profile image
sassy59 in reply to Vonnie50

Wishing you well Vonnie. Xxxx

Vonnie50 profile image
Vonnie50 in reply to sassy59

Thanks again x

free15years profile image
free15years in reply to Vonnie50

You are not alone being scared, these things will pop up now and then, but you always think the worst.....Keep calm and relax, easier said than done I know...am going through the same thing at the moment . Get well soon x x x x

Vonnie50 profile image
Vonnie50 in reply to free15years

It is very frightening hope you feel better Son xx

mrsmummy profile image
mrsmummy

It could just be the warmer weather. Try to stay calm when breathing and don't push yourself too much before checking with your GP.

Vonnie50 profile image
Vonnie50 in reply to mrsmummy

Thank you was going force myself to the gym but think it will wait until tomorrow

Caspiana profile image
Caspiana

Hello Vonnie50 . 👋🌸

Everyone has given good advice. I Just wanted to wish you well and I hope you feel better soon. xx 🌻

Vonnie50 profile image
Vonnie50 in reply to Caspiana

Thank you still trying to relax and sleep x

mellyme profile image
mellyme

Don't know what region you are in, but the warmer and/or more humid weather (and allergy season where I am) is painstakingly harsh on the lungs. Yes, it is scary. It's like okay for a while, aside from the (my) usual wind sucking when I do stairs, but this time of year wreaks havoc. I love summer, but will pay dearly when I go on a vacation during the hotter months (now till about mid October). I love the beach with family, but end up spending 23 hours daily in the indoors with a/c, and those nights are scary uncomfortable. The cold here doesn't do as much discomfort (whaaa...COLD can't DO discomfort, but I digress...). Anywho, hang tough and know we are here with you.

Vonnie50 profile image
Vonnie50 in reply to mellyme

Thank you for your time and it’s cool here in uk at moment but I am not sleeping and lots of stress so that might be making me worse ?

mellyme profile image
mellyme in reply to Vonnie50

I have found stress to be a criminal of felonious proportions. Stress causes me mid-throat hoarseness within minutes. In fact, I know I am stressed when I hear that type of hoarseness. Then it morphs into a quieter version with shallow lung power. That usually means it will be a rough go at trying to sleep, a strange thing considering I am narcoleptic. Sleep is usually like blinking. It's gonna come at any time no matter how hard I battle. Anyway, I have to focus on the Lamaze-like breathing techniques, aware that it will pass, thus avoiding more stress. Works 40% of the time. :)

It will change when it does, which will be when you realize it's been okay for a day. :)

Keep us informed.

xx

Vonnie50 profile image
Vonnie50 in reply to mellyme

I will do what is that breathing technique you mentioned never heard of it before ?

mellyme profile image
mellyme in reply to Vonnie50

It is similar to our pulmonary exercise. One breath in and four good puffs out through the mouth. I do it in bed when I feel that anxiety feeling approach, usually caused by the "where is the Oxygen" manic. One:Four. Try it, but as always, I am no MD; can only share my experience. Hope you have a good day soon.

xx

Vonnie50 profile image
Vonnie50 in reply to mellyme

Thank you x

donut43 profile image
donut43

Could be the change in weather, but a visit to the GP to allay your fears.

Dan

Vonnie50 profile image
Vonnie50 in reply to donut43

Dr impossible to see 3 weeks plus to see him

Hacienda profile image
Hacienda

Hi Vonnie, Do you have a day at GP's where they have a " Walk In" day, I have COPD and Normally I can see a Doctor Straight away or use the walk in Times. Please Push the Receptionist as They are your Door to GP. Good Luck xxx

Vonnie50 profile image
Vonnie50 in reply to Hacienda

I’ll try just going up there see if that works thank you

Shazza59 profile image
Shazza59

Hi Vonnie, so hard for you to be feeling like that. Sometimes I feel breathing worse than others and usually when concentrating on it more and the anxiousness takes over, when distracted or out with company never feel as bad. So maybe it is due to worry or stress with you. Tough you can’t see your doctor yet but make your appointment and at least you can talk it through when you see him. Take care and hope things improve today. Sharon x

Vonnie50 profile image
Vonnie50 in reply to Shazza59

Thank you I think stress has a lot to do with it and lack of sleep all the time x

free15years profile image
free15years in reply to Vonnie50

Yes, it could be, I thin the same x

Susan1200 profile image
Susan1200

Hello Vonnie50,i hope you manage to see a doctor today ,if not try the walk in center.try and stay calm, take a few deep breaths.

All the best Susan.

Vonnie50 profile image
Vonnie50 in reply to Susan1200

Thanks Susan

Hi vonnie50 .I would ring your gp surgery and explain that you are struggling more than usual with your breathing and that could they perhaps get you on the list for a call back from gp ..this in turn usually gets the gp on the phone to you where u can voice your concerns and hopefully the gp will then tell you to pop down to the surgery as I'm sure they must keep a few appointments hidden away for emergencies here and there anything is worth a try but I will say I agree with everyone else weather and stress do not help ...i bit of advice for you when your not sleeping ...try a fan on you I swear by one ...it relaxes me as my breathing is bad 24/7 so I have a fan blowing on me constantly ..it really relieves the sheer panic when I can't physically get my breath xxx hope you are feeling better soon but stay calm xxxxxtake care 💝💛💜Mel xxx

Vonnie50 profile image
Vonnie50 in reply to

Hi sorry to here your short of breath at all times. Don’t know how you do it. I was so scared and panicky thought I would explode. I think I will buy a fan too sound good idea. Have you been ill for long ?

in reply to Vonnie50

Hi yes 3 years where I have been bad ...twice been in hospital touch and go with type 2 respiratory failure ...the breathing or lack of breath horrendous xx I totally agree you should always try nip any niggles u have in the bud quickly as sometimes it can be the start of a flare up xxx you sound quite active and fit usually so hope your feeling better today ...oh and yes do try the fan it works for me I even have a remote control one so I don't have to get up and down ha xxxx😊xx take care love mel xx

Vonnie50 profile image
Vonnie50 in reply to

Oh hun why Ill so long or was that when diagnosed? I scared stiff can’t sleep for panicking

in reply to Vonnie50

No don't worry I have a really rare lung disease called lymphangioleiomyamatosis (lam lung disease for short )and on this site there are just me and Fran Happy London who have it (there are roughly 162 people in England with it )so very rare ..Fran is more active than me as I have been very unlucky Lol ... Not sure if the country Fran lives in has more woman with it than England but I do know I doubt very much your illness is getting worse I just think it's all about lifestyle choices and there will be people on here who will give u sound advice on how to deal with and manage your condition as you sound like No one has given you details on coping and medicating yourself etc which if I was you should possibly get someone you can see every few months (a consultant ) perhaps ..that way they can keep an eye on your condition and treat you accordingly ...you must be persistent if you aren't getting the help and support you need xx X hope this helps 😉stay strong 😊xxxx Mel xxxx

Vonnie50 profile image
Vonnie50 in reply to

Thank you I do try but next appointment with specialist is March 2019. But going try get some answers from dr. I have heard of your condition but not sure of implications of it. I do wish you all the best and hope we all can be helped xx

in reply to Vonnie50

Unfortunately mine is progressive so no cure for it ...I'm looking into a double lung transplant which is not a cure but defo will give me the chance to breathe normal and lead an active life for however long the new set of lungs lasts and that's if I'm even eligible as there is a big lot of tests etc that need doing first...so that's a long way off as need to make it onto the Transplant list first...if your app is next year then that's a good sign I defo believe you will lead a good long life and this little hiccup is perhaps weather stress related so please just relax and enjoy the nice happy warm days xx xx mel xxx hope your app goes well Thurs pls try give us all an update xxxx😊

Vonnie50 profile image
Vonnie50 in reply to

Thank you Hun I hope you qualify. Unfortunately Emphysema is progressive and no cure either x will update you on appointment

in reply to Vonnie50

I am sorry my mistake I wasn't thinking but you are at the early stages and I'm sure it's about how you lead your life and taking the necessary steps to know when a flare up is starting and as your consultant only wants to see you next year would lead me to believe that they aren,t concerned about your condition and are happy to see you yearly at present so I hope you are sorted Thursday at your gp and back to the gym etc ...get that feel good factor 😉xlove mel xx

Vonnie50 profile image
Vonnie50 in reply to

Thank you so much and I hope your right. Best of luck and feel free to keep in touch x

in reply to Vonnie50

Yes im gonna follow u now xx Let us know how u get on 💛💜💚

Vonnie50 profile image
Vonnie50 in reply to

Thank you really mean it just had massive heart flutter palpitations thing. Hopefully stress nothing worse x god bless you

Superzob profile image
Superzob

Good advice from other posters. You don't mention if you're on any medication at the moment - putting you on some, increasing existing dosage or changing current ,education are all options you could discuss with your GP. I have the option of a telephone consultation where I live, and that might be an option if your daughter's ill and you don't want to leave her. By the way, "safe" cleaning products don't mean you can't be allergic to them (pollen's safe, but it doesn't stop hayfever!).

Vonnie50 profile image
Vonnie50 in reply to Superzob

I am on spiriva, symbicort daily and have salamol for emergencies. Never been shown much or told anything. Only things I learnnare from here or internet. Manage to get appointment for Thursday as someone cancelled x

Superzob profile image
Superzob in reply to Vonnie50

Seems a step in the right direction - hope it works out for you.

Vonnie50 profile image
Vonnie50 in reply to Superzob

Really hope so as terrified x

JoM49 profile image
JoM49

Ive been bad recently and pulmonary nutse pointed out the High Pollen count probably not helping.

Vonnie50 profile image
Vonnie50 in reply to JoM49

Strange how things can affect us that never did before isn’t it ?

jac401 profile image
jac401

Sorry you're having a difficult time Vonnie. My Mum had dreadful difficulties breathing with end stage COPD. I live a long way from where she was, so used to ring her every Sunday evening and sometimes, on answering, she could hardly breath or talk. I would persevere with her, get her chatting about my sisters, etc and what had been going on in the family, and by the time I said goodbye, she would be breathing almost normally, and chatting away. We worked out that, when talking, you forget about the breathing, and concentrate on the conversation, so the breathing becomes normalised. I am asthmatic so understand what that feeling is, of not being able to get enough air in, but talking (which I'm told I do a lot of!!) doe help, plus it keeps you from getting stressed and making your breathing worse. If you live on your own try singing along to the radio, or even (at the risk of being thought mad) talk to yourself - I do. Hope this is constructive for you.

Jacqui

Vonnie50 profile image
Vonnie50 in reply to jac401

Thank you I do understand what your saying. I have Emphysema which is trouble getting air out . I think I need to make more adjustments so sad though. Love being on the go all the time . Appreciate the reply

mommabear1959 profile image
mommabear1959

i have copd and Emphysema...they may want to start you on a course of Prednisone, i just went through 2 weeks, 6 tablets at once at 2mg each and notice a big difference, however major headache side effect, i also clean homes, Dust is not our friend.. wear a cotton mask.

Vonnie50 profile image
Vonnie50 in reply to mommabear1959

Thank you I will try wearing my mask more makes me so hot though and claustrophobic

Ellsbells1234 profile image
Ellsbells1234

I agree with everyone else, get an urgent app with GP. How were you diagnosed Vonnie? Spirometry or xray or both? Hope you feel better soon.

Ellsbells1234 profile image
Ellsbells1234

Hi Vonnie, I agree with everyone else- make an appointment with the GP ASAP. How were you diagnosed? Spirometry or xray or both? Hope you feel better soon xxx

Ellsbells1234 profile image
Ellsbells1234 in reply to Ellsbells1234

Sorry didn't realise my message posted twice!

Vonnie50 profile image
Vonnie50 in reply to Ellsbells1234

I do that sometimes too by accident got appointment Thursday luckily as they had cancellation

Ellsbells1234 profile image
Ellsbells1234 in reply to Vonnie50

Ah great try to stay calm in the meantime. We're you diagnosed through x-ray?

Vonnie50 profile image
Vonnie50 in reply to Ellsbells1234

No through ct scan in London was being tested for work allergy what a shock I got to here Emphysema. I can’t work at vets now as to hard on lungs. Now part time cleaning very hard when single too

Ellsbells1234 profile image
Ellsbells1234 in reply to Vonnie50

Ah let us know what your doctor says. Wishing you well. X

Vonnie50 profile image
Vonnie50 in reply to Ellsbells1234

Will do and thank you x

Ern007 profile image
Ern007

Sorry for late reply.

You say "mild Emphysema" - I don't think your Emphysema is deteriorating so quickly from being diagnosed in February.

Do you smoke? This can make even "mild Emphysema" problematic. Are you wheezing because if so, that's a sign it could be a flare up.

You say you are "worried" - Anxiety can make Emphysema seem worse.

As stone-UK advises would be best to see a GP, just in case a flare up is starting and for your peace of mind.

Vonnie50 profile image
Vonnie50 in reply to Ern007

No wheezing at all but not sleeping and Very stressed. Got appointment Thursday hope this helps my dr only gives 5 mins

Vonnie50 profile image
Vonnie50 in reply to Ern007

Not smoked over 4 years

Stumpy55 profile image
Stumpy55

Hi Vonnie50 yes it is scary when you are having breathing problems and the heat doesn't help at all, I sit in front of my fan constantly and it helps me no end. I agree with others about seeking medical advice as it could well be the start of a flare up. Please let us know how you get on? Take care 🤞😊

Vonnie50 profile image
Vonnie50 in reply to Stumpy55

Thank you and I will. Just wish I could relax and sleep x

skischool profile image
skischool

Relax now vonnie,your anxiety although understandable far outweighs the severity of your condition,even were you to suffer an exacerbation/flare up or infection you are both young enough and fit enough to handle it in your stride,if i wasn't so tired after a hard days gardening and chasing after a dammed spoiled cat i would say get your glad rags on and we are going to hit the town with a vengeance,though you would run a mile if you saw my sad attempts at dancing,so your appt is booked,you will be prodded,probed and listened to and hopefully your Gp will say all seems fine keep using your inhalers .sleep well and deeply young lady......Ski's and Scruffs x

Vonnie50 profile image
Vonnie50 in reply to skischool

Would love a night out be great and I am sure I would not laugh at all. Hopefully I am ok and stay well forever (wishful thinking) my dr not the best as 5 mins in there and next patient x take good care of yourself as your needed

skischool profile image
skischool in reply to Vonnie50

just try to be assertive with your gp,explain your symptoms and also mention your anxiety about the situation and if you feel you are not being listened to or being given enough time raise concerns with the practise manager.you can do it,take control, good luck my love,,,,,Ski's x

Vonnie50 profile image
Vonnie50 in reply to skischool

Thank you I do try but seem so busy tried to get another dr but all have waiting lists ridiculous is it not x

skischool profile image
skischool in reply to Vonnie50

the situation is far from ideal,that is why i say be assertive and in control otherwise you just become a number.good luck with your appointment and take as much time as you need.............good night vonnie and older man needs his bed,,,,,Ski's xx

Vonnie50 profile image
Vonnie50 in reply to skischool

Me too and I will try. Night x

Stumpy55 profile image
Stumpy55

I agree with skischool, and trying to relax however hard is essential. The more stressed you are the worse you will be. When I am having a blip as I call it, I talk myself down until I get my breathing under control and then I concentrate on breathing excercises . Talking myself down works for me, I just say "slowly slowly and it somehow comforts me. 😉x

Vonnie50 profile image
Vonnie50 in reply to Stumpy55

I understand this it’s the progression that worries me people saying you will suffocate to death can’t get out of head

Vonnie50 profile image
Vonnie50

Update had to beg for urgent appointment which was today at 3pm. When I did get in with all my symptoms and questions which he read and printed out a Perscription for a stronger antidepressant 😪 . He did not even listen to my chest or do anything. Wish I could find a better doctor to help me. Feeling let down. On upside I am on waiting list for another doctors surgery maybe they be better. 👌

Vonnie50 profile image
Vonnie50

Update saw dr today was given a whole 3 mins waste of time wish I could get a better doctor. Wrote everything down so not to forget anything. He read it then perscribed stringer anxiety tablets 😪 no checks no listening to lungs nothing

mommabear1959 profile image
mommabear1959 in reply to Vonnie50

Have you been to an emergency doc.. in a hospital? .... how long have you had this doctor..obviously he thinks your anxiety is getting the better of you..could this be?

Vonnie50 profile image
Vonnie50 in reply to mommabear1959

Hi been with him over 9 years he know’s my son who is 30 causes a lot of issues with binge drinking and more and recently he changed my medication as I had been on citalopram for 20 years and had stopped working this was before my diagnosis in Dec. I have not been to local hospital so far rather avoid if possible but like many since finding out I have Emphysema I feel a lot worse and seem to catch every cold bug ect .. thank you for taking time to respond

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