can someone tell me the truth about cold progression

I do agree with you exercise is very important and I will say I find where I am is very hard for me to accept and will also agree to feeling sorry for myself but it is not that I wish to feel like this,but because I can't help feeling like this.I found out less than one year ago and as time goes by I do hope to be as positive as you and I will say 15 years is a very long time to have severe emphysema you must be doing something very right so I thank you for your help not just to me but to all who read this page.I will try harder ,you take care of yourself.

Hope you are well.fedup2 here.

have posted update on my site.please let me know how you are.

Hi Poppysocks, about your roll-ups, have you tried small cigars? Rolled in the natural leaf?  Its the chemical paper that is the bad thing. Maybe you shouldnt have discarded your inhalers, no wonder your chest aches . and you are damaging your heart too. Change your  doctor, today not tomorrow. Good Luck --- jay.

Hi jay,no I have not tried small cigars,I understand I should be on my meds,but untill I find out which med could be causing the Oral Thrush,( I think it might be the Seretide 500,not sure) till I see doctor.

Also on Spiriva and Ventilin) plus morphine patches 5mg,Paracetomol caps,(BP tabs high blood pressure)

My husband has just gone round to a new doctors surgery to bring back forms to fill in to go on  their patients list.

So yes,we are changing doctors we have set the ball rolling.

Thanks for advice appreciated.Take care.

Hi poppysocks.Well done on the cigs.I am worried as you have taken yourself off meds.I don't think this is wise,please rethink or see your new doctor a.s.a.p.I too feel like you when I think of stage 3 Emphysema,I feel I am talking about someone else.Think it's a way of dealing with it.Since going on anti depression meds I am not crying like I used to,would you think of trying them,they do help,honest.I,like you do not like taking meds,but it is what we have to do.I am now having pains in my arm and down the side of my chest,was told it is because my lungs have grown with Emphysema.What next!!!Hugs back to you and do mind yourself xx

Hi fedup2.I am waiting for a doctors telephone call from old doctor before I fill in the forms for the new doctor.

I argue with myself and question my diagnoses because although I have seen my scan,and my lungs are black (tar I expect) all over except the bottom parts near my diaphram,and have been told Fev -1 of 0.8 is now (36% predicted). and an FVC 1.7 (62% predicted ) whatever all that means ???

I am Not on oxygen..and my oxygen saturations are 98% on air. ??

I don't have much energy,and feel very tired ,but I am not depressed,so will give those sort of tabs a miss I think.

It's one day at a time for me,as I just cannot take it all in yet !!

I really need to see a doctor,but it is so difficult to get an appointment,that's why I.m waiting for doctor to call me about my meds,but he hasn't bothered yet.

I'll be ok ,don't worry about me,you take care of yourself,big hugs for you (((hugs))x

Poppysocks of course I would worry,as we are both at the same stage or thereabouts,my Fev-1 is 32%,don't know what the other one is,this site is there so we can help each other and you are the one who thinks of me so of course I would worry about you.At first I didn't think I needed depression meds,but like you I couldn't take it all in,and what I could take in made me cry,think about it as they have helped me.You know the tiredness alone woukd make one cry ,and the fact that we cannot do the stuff we used to do.My life has changed so much as I am sure yours has.If doctor does not phone you tomorrow,will you phone him as you need to be on your meds,even go to your old doctor if thats the only one you can see.I am no doctir,but I know our meds are very important.Let me know how it goes.Again hugs back at you.Take care.x

The oral thrush is from Symbicort - If I do not rinse with a tiny bit (someone said they couldnt afford brandy ? haaa haaaa ) of alcohol I get it all the time. I have never had Seretide or Spiriva, I do have Ventilan but try not to use it often. 

Morning fedup2 I will be phoning the old doctor today to ask what is going on,have no doubts about that. !

My favourite hobbie was/is gardening,and now I can't be out there doing any digging,and planting,it feels like I am grieving for the things I use to be able to do,

I use to grow most of my own plants from seed,now I can't even stand up too long in the kitchen to prepare and cook meals,hubbie does help me with it all,but I feel I have lost my independance by having to have so much help to do as much as I use to do.

Are you on Oxygen ? I am dreading that stage,so I try not to think about it too much.

I am making the effort to go out today with hubbie to town,we will take the wheelchair if I need it,(hopefully won't,)I have a stick,and hold onto his hand,and sit on a seat where I can get my breath back as often as I need to.

The sun is shining,and today is a good day for me,hope you have the same.

As we both know,others are so much worse off than we are,thats what I keep in my mind.

I also have Osteoarthritis in hands and feet,plus Fibromyalgia,so every day I feel different and effected by one illness or the other of the three.

Take care,and smile at someone today,you might get a smile back. (hugs) .

 

Morning Jay I don't take Symbicort,so my consultant thinks it might be the Seretide 500,it is a high dose,and he said I might be one of those who is susectable in getting this Oral thrush using it,he said he would write to my doctor to prscribe me a spacer whatever that is..still waiting for doctor to phone me,but I shall be phoning his surgery later to see why I have had no contact from him since I was diagnosed early this year.I was rinsing my mouth every time I took the stuff and cleaning teeth also as usual,plus using Listerine mouth wash...

Take care enjoy the day.

morning to you too,so glad you are phoning doctor today.You had lovely hoppies,always in the garden, nowonder you miss that.I used to go out to my mums house and to the shops and to my friends for a chat and coffee.That has all stopped as I get out of breath so easy nowadays and I hate if people see me when I am like that.Also I should have said my pains are worse now then they were so that also hinders me.No I am not on oxygen seem to haveenough of that for the moment.I don't go out much so well done to you for doing that.Let me know what doctor says,enjoy outing and take care of yourself.Hug to you too.x than they were

fedup2 and poppysocks, have you tried any natural remedies? Have you found buying a juicer makes you feel much better in yourselves ? There is so much info on the net to help with pain and breathlessness, not things to buy but recipes you can make at home. Really you should both visit your friends, dont turn into recluses ... 

Hi there,just got back,worn out,but I did enjoy it. had breakfast out too,but could not eat it all..

Plenty of places for me to sit down,and people watch,I like doing that,the sun was shining too,which helps pep one up doesn't it.

You enjoy your day,I'm going googling on my comp now,and going on my forum to chat to others. (((hugs)))

I don't get out much either,I have to syke myself up to even get in the car..LoL.

 

Must admit to being in recluse most of the time,other than for doctors appointments or dentist..

We have just moved here Jay,don't know anyone,grown up son lives 20 odd miles away,so not so easy to visit,when one does not enjoy going in a car anyway.

Traffic frightens me mowadays,although hubbie is a very good driver...it's the other drivers that put the fright in you.Does me me anyway,

The least I go out the better.I know it is not good for me and I will try harder to get out,when I have the energy etc.

I don't eat meat any more,I stick to veggies and potatoe and fish,no white bread,and only brown sugar,and fresh Orange juice,and yoghurt plain.full fat as I have lost over two stone in weight.thanks for infor for online recipes though. I will look at them.

Hi jay,I haven't chated with you for some time.I know you are right,but I think I have turned into a recluse only because it is so much easier not to gi out as it takes so much out of me to get ready and if I met anyone it is hard to chat if your breathing is not great.Really I must try harder.How are you doing I really hope I can get to be as positive as you,I admire people like you.Hope you are doing ok.Take care and thanks.x

Hello fedup, you really need to get out in the sunshine-(if it does shine where you are) Have you changed your diet, you didnt say? I am quite weak now but it makes me angry and then I can get stuff done, slowly ... haaaa haaaa.You should not be so fussy, just put a coat on, get out and meet your friends, they will understand you are a bit puffy .. Tell them you are training for a marathon, tht should get a laugh

Hi jay,no sunshine here,it is raining,you are lucky to have it.Does it make it harder to breath in heat?I am really trying to loose weight,have lost some but still a fair bit to go!!!So sorry and sad to hear you are weak as you have to be one of the most upbeat on this site,and even with that you keep going and help others with your sound advice.That would be funny,as before I ever got this they would laugh if I said I was training for a run.I will take what you said on board,as I know you are right.Please take care of yourself as we all need you.x

Hi jay,no sunshine here,it is raining,you are lucky to have it.Does it make it harder to breath in heat?I am really trying to loose weight,have lost some but still a fair bit to go!!!So sorry and sad to hear you are weak as you have to be one of the most upbeat on this site,and even with that you keep going and help others with your sound advice.That would be funny,as before I ever got this they would laugh if I said I was training for a run.I will take what you said on board,as I know you are right.Please take care of yourself as we all need you.x

Hi poppysocks,so glad you enjoyed your outing,people watching can be fun.Did you hear from your doctor,I so want to hear you are back on your meds.Did you try to loose weight,if soPLEASE give me your help,if not why did you loose so much ?.I am still not sleeping but can't figure it out that I am not as tired as I should be.My husband flew to europe this morning and I am his alarm clock call.Have a good weekend and take care.I also send you a hug.x

My old doctor has just phoned me this morning,I have just come off the phone from speaking with him.

He said it would be the Seretide 500 causing the Oral thrush,and I could stop using that one.

I have to continue with the Spiriva once per day,plus the Ventolin,with an acuvater thingy within it.??? don't ask that's because my hands have the Osteoarthritis in them and I cannot push up with my thumbs or fingers to activate this Ventolin pump.

Doctor was on the phone with me for about half an hour explaining things to me,about my Emphysema (copd) and about time too.

At last I am being taken notice of.

No, I was not trying to lose weight at all.My normal weight up to last year was 9 stone 12lbs.I am now 7st 7lbs,although my food intake has not changed at all.

So far my weight loss has not been investigated.

Take care of you whilst your husband is away,hope it is not for too long.

Do keep in touch,we can go forward together in this,and be some sort of comfort to each other,letting our feelings pour out on the paper,if you have an email addy we could also get in touch that way.don't know if your email addy is on your profile I will have a look.also perhaps you could tell me if mine shows so as you can use it to contact me any time you feel like it..

Sending you gentle hugs.((hugs))

 

Hi poppysocks.I am so delighted that your doctor has at last contacted you and you are back on your meds.That is a lot of weight to loose as you can you should est all the nice high calorie things to gain some back.I do kniw some of them may not be good for you but there may be some that are ok.It is great to be able  to say what we want on this site,that is why I don't use e-mails as my husband would be abke to see them and I really do want to chat about stuff that I don't tell him.We can use this site if that's ok with you.He will be back on Monday but has left all food in.He is very good that way.

Hello  again, I expect you are going to laugh now - when I need the ventilan I have used books, prop the plastic thing on one and use another to  push the puffer in ... 

Me again,hit wrong button! Apologies.I really want to go forwar being able to pour out my feelings so I really want to keep in touch.Take care and a hug back to you.x

Me again,hit wrong button! Apologies.I really want to go forwar being able to pour out my feelings so I really want to keep in touch.Take care and a hug back to you.x

Me again,hit wrong button! Apologies.I really want to go forwar being able to pour out my feelings so I really want to keep in touch.Take care and a hug back to you.x

Hi fedup, the heat is great, when it gets over 35 I have the fan on and a necklace of iceblocks in socks . . . . I read a book years ago and tried to cut down on sleep time, now my brain is set on 6 hours so I am usually on the net till 2 or 3 am in winter, earlier in summer as I love to see the sunrise. 

I understand fedup2,that's fine with me, Take care.

Hi poppysocks,back from consultant and my news not good.He is having a ct done in the next few days abd said he is sending me to a friend of his for lung transplant tests,he feels this is the road for me now.I am so scared as I have read that so many die during operation,and another percentage die  from rejection and that some get one year others three.I don't knowwhat to think.Hope all ok with you.Take care.x

Hi poppysocks,back from consultant and my news not good.He is having a ct done in the next few days abd said he is sending me to a friend of his for lung transplant tests,he feels this is the road for me now.I am so scared as I have read that so many die during operation,and another percentage die  from rejection and that some get one year others three.I don't knowwhat to think.Hope all ok with you.Take care.x

Hi poppysocks,back from consultant and my news not good.He is having a ct done in the next few days abd said he is sending me to a friend of his for lung transplant tests,he feels this is the road for me now.I am so scared as I have read that so many die during operation,and another percentage die  from rejection and that some get one year others three.I don't knowwhat to think.Hope all ok with you.Take care.x

I am so sorry to hear your news,but I'm sure if this is what your consultant  thinks might be the best thing for you,then find out as much as you can from him/his friend, after the Scan has been done (if not before) about the op.

I just don't know what else to say to you except,take one day at a time as we have been doing,may I ask how old you are...I am coming up to 69,so no hope for new lungs for me,but for you,could be the beginning of a longer life span.

Wishing you the very best,and sending you a very big hug.((((((Hug))))

Let us know how you are progressing as time goes on.

I'm not so bad,I plod on.Take care of you. x

 

Hi,you are right I have no option but to accept,but I will find out as much as I can as I watched a friend of mine go through cancer treatment,which was very hard on her,and after it all she died.I am just gone 59,I am not as sure as you that this could be the start of a longer life span,the stats on lung transplants are not good,it just seems that my breathing is getting worse and no neds left to help me.This could also take a long time to happen,that is if I go ahead and also if I turn out to be a correct person for this operation.Glad to here you are doing ok,we will keep in touch.Thanks for your help and mind yourself.Hug back to you x

Hello fedup2,I understand what you are saying,and I shall be thinking of you,look after yourself,have you a carer to help living in ?

I have my husband who cares for me,although he has already gone through two cancer ops,he is now in some kind of remmission,and being monitored every six months.

I do hope you have someone to help you (I do think you said you also have husband) not sure now without reading back.

I wish you well,and hope all goes well for you.(((hugs)))

Hi poppysocks,I spent a lot of time during the night checking sites to do with lung transplants and you know I am really not sure it is a road I want to go down,it seems I will be always waiting for rejection to happen and a lot of time hasto be spent in hospital checking out how things are going.I know my life is not great now but not sure it woukd be any better.It says the lung will fail but no one can say when,you may get  1 2 or 3 years.I don't think this is the way I want to spend mytime.I will go to the doctor and do the tests,I may not be suitable,and make up my mind then.I am so scared,not so sure this is for me.Yes my husband has been great,I think this illness is helping to bring back our feelings,I akways loved him but time changes things.We have been married for 36 years,he was saying how hard he finds this,looking at me not able to breath right,maybe I was not so fair to him,he does all the housework and cooking and still works very hard as well,maybe something good will come out of this mess.I will ket you kniw how things go,take care of yourself.xx    

Hi poppysocks,I ment to say how sorry I am to read about your husband,you have enough to worry about.I will say a prayer that he will stayin remission and get good health.Do you ever wonder why some people seem to get a lot and others not so much,not a road I should go down.Take care of eachother.xx

Hi again .fedup2 back

.have left update on my site.How are you..hope all good

please let me know.x

Hi..how are you this is fefup2 back.please let me know.

Morning poppysocks1

A spacer is a long round plastic transparent  medical device with a rubber mouth piece which looks similar to a oxygen mask usedin hospitals & it has an open part at the other end to plug in the inhalers they do a child size & adult size youcan ask at any chemist or pharmacy & they can show you what a spacer looks like & how it's used! I use one myself it took a bit of time getting use to it, I didn'teven like using it but I have to say I don't know about other peoples experiance but it does make a differance, also it feelslike not much medicine is getting into your mouth down your lungs but it does get there somehow! I hope this is of help good luck!